Coping with cancer and critical illness
Cancer once meant a death sentence. Increasingly, as medical scientists find new ways to combat it (or them--there are many types of cancer), it is becoming a chronic (and a sneaky) disease. Prevention is the best approach to fighting cancer, but when the disease strikes it helps to find knowledgeable support and to know the facts about how to fight and cope with it. Let me know of links to useful resources that are not yet listed here.
Sections: Grouped roughly as
Research, Types of Cancer, Types of Treatment, The Cost of Cancer, Tools for Coping, Being Helpful to a Cancer Patient
Research
• Researching cancer (where to look)
• What causes cancer? (including genetic factors)
• Screening and testing for cancer
• Foods that fight cancer
• Other approaches to preventing cancer
• Cancer research, advocacy, and educational organizations
• Hospitals and cancer centers
• Cancer by the numbers: cancer statistics (e.g., survival rates, incidence)
• Understanding the debate on health care reform and health policy
Types of treatment
• General information and approaches to treatment
• Avoiding overtreatment or possibly dangerous and unnecessary treatment
• Chemotherapy
• Radiation therapy
• Surgery for cancer
• Targeted therapies
• Radiation therapy
• Immunotherapy
---(CAR-T cell therapy)
• Stem cell therapy (including unapproved and quack therapies)
• Complementary & alternative cancer therapy
• Checking out clinical trials
See also Specific cancers
Costs, financial and travel support, wish fulfillment
• The cost of cancer -- and finding financial support
• Travel support
• Make-a-Wish and other wish fulfillment organizations
Tools for coping
• Tools for coping with cancer
• Managing cancer pain
• Cancer survivor stories
• Cancer blogs and personal stories about cancer
• Books about cancer
• Memoirs about struggling with cancer
Being helpful
• What to say or not say to people with cancer
• Helping, advocating for, or comforting a person with cancer
• Cancer support groups (groups/sites to help organize friends who provide food, rides, etc.)
• Support from friends and family
SEE ALSO Palliative and hospice care
Types of cancer
Sites with links about
Specific types of cancer (some generalizations)
Bone cancer, sites listing and describing
Brain tumors and brain cancer
Breast cancer
(includes section on Breast implants)
Carcinoma, melanoma and other skin cancers
Colon and colorectal cancer
Head and neck and oral and throat cancer
Kidney cancer
Leukemia, lymphoma, myeloma, and other blood cancers
Lung cancer
Mesothelioma
Multiple myeloma
Ovarian, cervical, and other gynecological cancers
Pancreatic cancer
Prostate cancer
Rarer types of cancer
Sarcomas
Thyroid cancer
Cancer syndromes
Ataxia-telangiectasia (A-T)
Birt-Hogg-Dubé syndrome (BHD)
Carney Complex (CNC)
Cowden Syndrome
Familial GIST Syndrome
Hereditary Breast and Ovarian Cancer Syndrome (HBOC)
Li-Fraumeni Syndrome (LFS)
Lynch Syndrome
What causes cancer? (including genetic factors)
And aging (see below)
"Cancer occurs when a group of cells divide in rapid and abnormal ways.
Treatments are successful if they interfere with that process.
That’s it, that’s the whole equation.
Everyone with cancer has a different experience."
~I’ll Tell You the Secret of Cancer
(Caitlin Flanagan, The Atlantic, 8-2021)
• What causes cancer? (American Cancer Society) Some types of cancer run in certain families, but most cancers are not clearly linked to the genes we inherit from our parents. Smoking and tobacco products are culprits. Diet, low physical activity, excess body weight, and alcohol use may affect your risk of cancer. Certain infections can lead to cancer, and so can exposure to certain types of radiation. Get the facts about some known, possible, and unlikely environmental causes of cancer. See also Known and probable human carcinogens .
• Risk factors for Cancer (National Cancer Institute) Age, alcohol, cancer-causing substances, chronic inflammation, diet, hormones, immunosuppression, infectious agents, obesity, radiation, sunlight, tobacco.
• AACR Cancer Progress Report (American Association for Cancer Research, 2024). See especially Survivor Stories and the Executive Summary.
• What causes cancer and what can be done to prevent it? (World Health Organization) Cancer arises from the transformation of normal cells into tumour cells in a multi-stage process that generally progresses from a pre-cancerous lesion to a malignant tumour. These changes are the result of the interaction between a person's genetic factors and three categories of external agents, including:
---physical carcinogens, such as ultraviolet and ionizing radiation;
---chemical carcinogens, such as asbestos, components of tobacco smoke, alcohol, aflatoxin (a food contaminant), and arsenic (a drinking water contaminant); and
---biological carcinogens, such as infections from certain viruses, bacteria, or parasites.
• VA Checking for Connection Between PFAS Chemicals and Kidney Cancer in Afflicted Veterans (Patricia Kime, Military.com, 9-25-24) The Department of Veterans Affairs will study whether kidney cancer is linked with exposure to chemicals used in military-grade firefighting foam and other products to determine whether veterans may be eligible for expedited benefits. The VA announced that the process could decide whether kidney cancer should be designated a presumptive service-connected condition for former service members who were exposed to per- and polyfluoroalkyl chemicals, or PFAS, often called "forever chemicals" for their environmental persistence.
• How does obesity cause cancer? "Overweight and obesity is the second biggest cause of cancer in the UK – causing more than 1 in 20 cancer cases. The risk is higher the more overweight you are and the longer you are overweight for. Keeping a healthy weight reduces the risk of 13 different types of cancer."
"Too much body fat can cause levels of growth hormones to rise, which tells cells to divide more often. This raises the chance that cancer cells will develop. Immune cells go to areas of the body where there are lots of fat cells. This can lead to inflammation, which causes cells to divide quicker. Over time, this can increase the risk of cancer. After the menopause, fat cells produce the hormone oestrogen. This hormone can make cells in the breast and womb divide more often, which increases the risk of cancer developing."
• What Causes Head and Neck Cancers? (Terese Winslow, CDC) And what can you do to reduce your risk. If you are 26 years old or younger, talk to your doctor about HPV vaccines. Don't smoke or use smokeless products. Use lip balm that contains sunscreen, wear a wide-brimmed hat when outdoors, and avoid indoor tanning.Visit the dentist regularly. Checkups often can find head and neck cancers early, when they are easier to treat.
• What’s Keeping the US From Allowing Better Sunscreens? (Michael Scaturro, KFF Health, 5-5-24) A decade after Congress told the FDA to expedite the approval of more effective sunscreens, the federal government still has not approved sunscreen ingredients that are safely being used around the world. Meanwhile, skin cancer is the nation's most common cancer.
• Cancer Prevention Overview (PDQ®)–Patient Version (National Cancer Institute)
• Cancer Prevention Overview (PDQ)–Health Professional Version (National Cancer Institute)
• What causes cancer? (Stanford Health Care) An excellent overview and explanation.
• So Long, DDT. See You Around Soon.(podcast and transcript, The Politics of Everything, New Republic, 5-4-22) Hosts Laura Marsh and Alex Pareene talk with Elena Conis, the author of How to Sell a Poison: The Rise, Fall, and Toxic Return of DDT. The United States banned the incredibly toxic pesticide DDT in the early 1970s. But it never went away. Being "exposed to poisons every day that we cannot control at all—whether it’s through pollution in the air or chemicals in our food—surely also is going to be a huge factor in causing diseases like cancer. Those companies kind of won the argument long term, in that those are not the first things we go to when we hear about a cancer diagnosis."
• The Rubber Industry’s Toxic Legacy in Akron(Yanick Rice Lamb, Belt Magazine, 3-5-21) Akron, Ohio—the Rubber Capital of the World. The stories of workers and their families reveal “unintended consequences” for life and health in the community. “What’s important is that for most of the chronic diseases caused by occupational toxins, they don’t appear for twenty to forty years after first exposure.”
In addition to asbestos-related illnesses and various types of cancer, medical research has shown links between industrial toxins and respiratory problems such as asthma, emphysema or chronic obstructive pulmonary disease (COPD); auto-immune conditions such as multiple sclerosis (MS), lupus, or sarcoidosis; reproductive issues; and even heart disease and diabetes.
“A lot of times people think diabetes is all about behavior, but there’s lots of burgeoning research showing that it’s actually often related to these metabolic disruptors that are in our air and the other parts of the environment."
• Weed Killer, Long Cleared, Is Doubted (Andrew Pollack, NY Times, 3-27-15) Introduced in the 1970s, glyphosate (the active ingredient in Round-Up) is the most widely used herbicide in the world. Is it "probably carcogenic" to humans or not? Pollack looks at the evidence.
• Common Herbicide Used In Monsanto’s Roundup Deemed ‘Probably Carcinogenic’ (Britt E. Erickson, Chemical & Engineering News, 3-30-15). World Health Organization agency reaches controversial conclusion about glyphosate
• Widely used herbicide linked to cancer (Daniel Cressey, Nature, 3-24-15) As the World Health Organization's research arm declares glyphosate a probable carcinogen, Nature looks at the evidence.
• Air pollution cancer breakthrough will rewrite the rules (James Gallagher, BBC News, 9-10-22) The team at the Francis Crick Institute in London showed that rather than causing damage, air pollution was waking up old damaged cells. One of the world's leading experts, Prof Charles Swanton, said the breakthrough marked a "new era." And it may now be possible to develop drugs that stop cancers forming.
• The Most Detailed Map of Cancer-Causing Industrial Air Pollution in the U.S. (Al Shaw, Lylla Younes, and Ava Kofman, ProPublica, 8-28-23) A new ProPublica analysis shows for the first time just how much toxic air pollution industrial facilities emit — and how much the chemicals they unleash could be elevating cancer risk in their communities. ProPublica’s analysis of five years of modeled EPA data identified more than 1,000 toxic hot spots across the country and found that an estimated 250,000 people living in them may be exposed to levels of excess cancer risk that the EPA deems unacceptable."
• The 10 most polluted states in the US (Russell Falcon and Nexstar Media Wire, The Hill, 9-10-22) Using 2021 data, U.S. News and World Reports’ feature on the “Best States” has ranked the most polluted states (no. 50-40) and the least polluted (no. 10-1) in U.S. News’ Pollution Rankings. The ten most polluted states (in descending order): Louisiana (most polluted), Nevada, Indiana, Delaware, Utah, Ohio, Oregon, Tennessee, Illinois, Alabama, and Texas. The ten least polluted states, with Vermont #1 and Idaho #10: Vermont, New Hampshire, South Dakota, New Mexico, Wyoming, California, Rhode Island, Maine, Colorado, Idaho.
• The Disturbing Truth About Hair Relaxers (Linda Villarosa, NY Toimes Magazine, 6-13-24) They’ve been linked to reproductive disorders and cancers. Why are they still being marketed so aggressively to Black women? See also What to Know About Chemical Hair Relaxers and Health
• Cancer stalked his family. It took years to find the culprit. (Laurie McGinley, Washington Post, 5-12-24) A review/article about A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery by Lawrence Ingrassia. "Part memoir, part medical mystery, Ingrassia's deeply reported book interweaves two narratives. One is the poignant and distressing story of his family, and others, who were repeatedly menaced by something they knew nothing about. The other is the often stirring account of scientists who worked tirelessly to unravel the mystery. Ultimately, researchers identified an inherited cancer syndrome and, eventually, the culprit behind it."[Clearly more needs to be added here! When I have time.]
• A Trade-off Between Skin Protection and Testicular Cancer Risk? (NPR, Science Friday, 10-11-13) A genetic variation that protects skin against sun damage may also increase the risk of testicular cancer, at least in mice. Researcher Gareth Bond discusses why this relationship may have evolved and how the findings could help to create personalized cancer treatments for humans.
• Pioneering Study Links Testicular Cancer Among Military Personnel to ‘Forever Chemicals’ (Hannah Norman and Patricia Kime, KFF Health News, 8-9-23) The military first documented health concerns surrounding chemicals known as perfluoroalkyl and polyfluoroalkyl substances, or PFAS, decades ago yet has continued to use firefighting foam made with them, despite scores of lawsuits by its personnel and high rates of testicular cancer among troops. Known as “forever chemicals,” they do not break down in the environment and do accumulate in the human body. Given its effectiveness in fighting extremely hot fires, like aircraft crashes and shipboard blazes, the Defense Department still uses them in operations. Rarely, if ever, had the military warned of its dangers.
• A Plant That Sterilizes Medical Equipment Spews Cancer-Causing Pollution on Tens of Thousands of Schoolchildren (Kiah Collier, ProPublica and The Texas Tribune, and Maya Miller, ProPublica,12-27-21) In 2019, Yaneli Ortiz was diagnosed with acute lymphocytic leukemia, a cancer that’s been linked to ethylene oxide exposure. Her hip bone has deteriorated due to steroids that diminished the blood supply through her leg and joints, leaving her in constant pain.
• Poison lurking in schools (PCBs) (Center for Investigative Reporting, Reveal, National Public Radio, 6-11-16). Across the country, tens of thousands of public schools could be contaminated with toxic polychlorinated biphenyls – compounds more commonly known as PCBs, which were used widely in building materials such as window caulk. PCBs have been linked to everything from skin conditions to cancer. science is showing that PCBs are more dangerous than we thought, but the EPA is not doing enough to protect children from exposures (from PCBs in caulking in school buildings built to educate the baby boomers). EPA has a history of making decisions favorable to industry.
• Chemical Safety Bill Could Help Protect Monsanto Against Legal Claims (Eric Lipton, NY Times, 2-29-16) The giant biotechnology company Monsanto last year received a legislative gift from the House of Representatives, a one-paragraph addition to a sweeping chemical safety bill that could help shield it from legal liability for a toxic chemical only it made. The provision would benefit the only manufacturer in the United States of now-banned polychlorinated biphenyls, chemicals known as PCBs, a mainstay of Monsanto sales for decades.
• War against cancer has more than one target (David Brown, Washington Post 4-27-10)
Cancer and Aging
• Aging and Cancer (Rebecca Roberts,The Scientist, 11-14-23) People over the age of 65 make up 60 percent of new cancer diagnoses and 70 percent of cancer deaths. As advances in medicine and healthcare maximize human life expectancy and the elderly population continues to grow, cancer rates are predicted to increase accordingly. The relationship between aging and cancer is complex, with several shared underlying mechanisms.
• Aging and Cancer (National Cancer Institute)
• Cancer and Aging: Two Tightly Interconnected Biological Processes Lieze Berben, Giuseppe Floris, Hans Wildiers, and Sigrid Hatse, Cancers (Basel), 3-19-21)
Age is one of the main risk factors of cancer; several biological changes linked with the aging process can explain this.
"Older patients often experience more side effects of anticancer treatments. Over-treatment should be avoided to ensure an optimal quality of life. On the other hand, under-treatment due to fear of toxicity is a frequent problem and can lead to an increased risk of relapse and worse survival. There is a delicate balance between benefits of therapy and risk of toxicity."
• The Challenging Landscape of Cancer and Aging: Charting a Way Forward ( Norman E. Sharpless, NCI)
• Trans-NIH Geroscience Interest Group (GSIG) Geroscience seeks to understand the molecular and cellular mechanisms responsible for aging as a major driver of common chronic conditions and diseases of older people. Read about the latest advances in the field, funding opportunities, upcoming seminars, and more.
• Cancer and Aging Research Group (CARG) Mission: to join geriatric oncology researchers across the nation in a collaborative effort of designing and implementing clinical trials to improve the care of older adults with cancer. The only requirement for membership is the desire to help older adults with cancer.
• Waxman Center Partnership for Aging & Cancer Research Foundation Cancer is a disease of aging. According to the National Cancer Institute (NCI), cancer incidence increases dramatically after age 50, and the median age of people diagnosed with cancer in the United States is 66. Americans diagnosed with the most prevalent cancer types are, on average, over the age of 50. With people living longer, the incidence of will continue to increase, despite the many advancements in prevention and treatment.
SWCRF is committed to funding research to identify the causal factors that contribute to cancer in older populations and develop minimally toxic treatments to prevent this projected cancer epidemic.
---Improving Your Healthy Longevity
• Cancer and Aging (Nature) This cross-journal Collection invites original research that explicitly explores the role of aging in cancer and vice versa, from the bench to the bedside.
• NCI videos about various cancer topics (NCI and YouTube)
• The importance of aging in cancer research (Nature Aging, 2022)
Researching cancer (where to look for advice and information)
• What is cancer? (National Cancer Institute, Defining cancer)
• Understanding Cancer (National Cancer Institute)
• NCI Dictionary of Cancer Terms (National Cancer Institute). NCI is part of the National Institutes of Health (NIH), a federal U.S. organization that funds cancer research and training.
• NCI Fact Sheets
• American Cancer Society has a chat line and a 24-hour help line (1-800-227-2345 or 1-800-ACS-2345)
• Cancer.Net (American Society of Clinical Oncology), oncologist-approved site providing patient-centered information about various types of cancer.
• OncoLink
• PubMed, a database maintained by the U.S. National Library of Medicine and the National Institutes of Health, contains more than 22 million citations from the biomedical literature. This is where to look for studies that are changing medical practice. Type in keyword to pull up citations and possibly abstracts and links to articles. A major research tool.
• Cancer Guide on How to access Medline and other medical databases (CancerGuide.org)
• How to Research the Medical Literature About Cancer (how to use databases and online resources). See also Use Search Operators To Find Stories, Sources and Documents Online (Meranda Watling, 10,000 Words--where journalism and technology meet, 4-19-11)
• A to Z List of Cancer Drugs (more than 200 cancer drug information summaries from National Cancer Institute)
• NCI Drug Dictionary
• Chemocare. Scott Hamilton's chemotherapy site offers general treatment information (drug info, side effects, wellness resources) for cancer patients.
• ClinicalTrials.gov (National Institutes of Health), a registry and results database of publicly and privately supported clinical studies of [cancer and other diseases in] human participants conducted around the world. Enter search term in the database to see related trials, criteria you need to meet to be included in a study, how and where the study is being conducted, and how to get in touch with the researchers.
• Tips for analyzing studies, medical evidence and health care claims (HealthNewsReview). Tips for understanding studies, aimed at medical journalists, but helpful for all of us.
• NCI-supported cancer-specific clinical trials. This database is limited to cancer, so it might be easier to use than ClinicalTrials.gov . Search by city, state, and type of cancer.
• National Comprehensive Cancer Network (NCCN) , a nonprofit alliance of cancer centers that develops evidence-based guidelines for medical practice. See especially NCCN Guidelines for Patients (and Caregivers)
• American Institute for Cancer Research (AICR) focuses on ways to prevent cancer, through the right weight, diet, and amount and kind of physical activity and exercise. The recipes in AICR's cookbook, The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life, are delicious (which can't be said of most healthy-eating cookbooks). I often give this book to families dealing with cancer who wonder what they can do to help.
• National Center for Complementary and Integrative Health, or NCCIH (formerly "and Alternative Medicine"--alternative to medication, surgery, and other traditional medical approaches). For example, "A review of evidence from clinical trials shows that a variety of complementary health approaches—including acupuncture, yoga, tai chi, massage therapy, and relaxation techniques—hold promise for helping to manage pain."
• Understanding Cancer Pain (includes Caregiver's Guide, Cancer Pain Treatments)
• PDQ Cancer Information Summaries, Editorial Boards, and Levels of Evidence (National Cancer Institute)
• Other ways to get PDQ information (NCI)
• Cochrane Reviews: Breast Cancer (evidence based information)
• Cochrane reviews of breast cancer options (reviews of the evidence, to facilitate informed decisions)
• Cure (Cancer updates, research, and education)
• Searching for cancer centers (American College of Surgeons)
• Women's Cancer Network. Comprehensive information about reproductive cancers, gynecologic oncologists, survivors’ courses, clinical trials and Foundation for Women's Cancer publications. (Reproductive cancers include breast, cervical, endometrial, germ and stromal cell, GTD, ovarian, primary peritoneal, uterine, vaginal, and vulvar cancer).
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• State Cancer Profiles
• Grand Rounds at Dartmouth-Hitchcock Medical Center (talks and slide shows available free online)
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• Push Hard for the Answers You Require (Denise Grady, NY Times, 7-29-07)
Understanding debates on
health care reform and health policy
"Of all the forms of inequality, injustice in health care is the most shocking and inhumane."
~Martin Luther King Jr.
• Whitehouse.gov The eight basic consumer protections the White House wants health care reform to cover: (1) No discrimination for pre-existing conditions, (2) No exorbitant out-of-pocket expenses, deductibles or co-pays, (3)No cost-sharing for preventive care, (4) No dropping of coverage if you become seriously ill, (5) No gender discrimination, (6) No annual or lifetime caps on coverage, (7) Extended coverage for young adults, (8) Guaranteed insurance renewal so long as premiums are paid. Learn more about these consumer protections at http://www.whitehouse.gov/.
• Cancer Patients Face Frightening Delays in Treatment Approvals (Lauren Sausser, KFF Health News, 12-22-23) Delaying cancer treatment can be deadly — which makes the roadblock-riddled process that health insurers use to approve or deny care particularly daunting for oncology patients.
• New Cancer Treatments Lie Hidden Under Mountains of Paperwork Dr. Wagle, an oncologist at the Dana Farber Cancer Institute in Boston, and his colleagues would build a huge database that linked cancer patients’ medical records, treatments and outcomes with their genetic backgrounds and the genetics of their tumors. The database would also include patients’ own experiences. How ill did they feel with the treatments? What was their quality of life? The database would find patterns that would tell doctors what treatment was best for each patient and what patients might expect." The holdup "turned out to be gathering their medical records. In the United States, there is no single format used by all providers, and hospitals have no incentive to make it easy to transfer records from one place to another. The medical records mess is hobbling research and impeding attempts to improve patient care."
• We’re spending $107 billion on cancer drugs, but is it worth it? (Carolyn Y. Johnson, Wonkblog, WaPo, 6-2-16) A "report from IMS Institute for Healthcare Informatics highlights 70 new cancer treatments, treating more than 20 types of tumors, all approved in the past five years....But the 72 percent increase in spending over five years in the United States raises a trickier question, too: Are cancer patients getting their money's worth? As $10,000-a-month cancer drugs have become a norm, doctors have begun to push back, insisting that many drugs aren't worth the price....Not all approved cancer drugs are alike. Some may provide profound benefits, lengthening life by years; others may significantly shrink a tumor, but increase patients' chances of survival only by small amounts."
• New federal guidance is hurting cancer patients, especially those in rural areas (Samyukta Mullangi, Opinion, STAT News, 3-1-24) "Until last year, my patient would have been able to make the hour-long drive to my clinic every four weeks for the injection and have our medically integrated specialty pharmacy send her the oral chemotherapeutics every three weeks by courier to her home." A befuddling rule change has led to serious disruptions in the world of community oncology, where the vast majority of Americans receive their cancer care.
"The Physician Self-Referral Law, originally issued in 1989, is intended to prevent fraud and abuse by prohibiting physicians from referring Medicare or Medicaid patients to a health care entity in which the doctor might have a financial interest. In its guidance, CMS seems to indicate that the actual existence of a medically integrated specialty pharmacy isn’t in violation of Stark. Rather, it’s the shipping or mailing of drugs to patients — in other words, patient-centric activities that, if anything, typically cost the pharmacy in extra postage, and which have no impact on physician prescribing behavior."
• Our Feel-Good War on Breast Cancer (Peggy Orenstein, NY Times Magazine, 4-25-13) "I used to believe that a mammogram saved my life....Sixteen years later, my thinking has changed. As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered?" An excellent overview of the issues.
• The Thirty Years' War (Jerome Groopman, New Yorker, 6-4-01) Have we been fighting cancer the wrong way?
• Excluded Voices. Trudy Lieberman's penetrating series of interviews on health care reform, in Columbia Journalism Review. Start with her interview with Wendell Potter, who "didn’t want to be part of another health insurance industry effort to shape reform that would benefit the industry at the expense of the public." You can also listen to Bill Moyers interview Potter or read the transcript and Potter's testimony before Congress.
• MIA In The War On Cancer: Where Are The Low-Cost Treatments? (Jake Bernstein, Pro Publica, 4-23-14) Big Pharma’s focus on blockbuster cancer drugs squeezes out research into potential treatments that are more affordable. Says one researcher: “What is scientific and sexy is driven by what can be monetized.”
• C-Span's Health Care Hub is a good place to find various town hall discussions, hearings, wonderful links. C-Span, you're wonderful!
• Why We're Losing The War On Cancer [And How To Win It] (Clifton Leaf, additional reporting by Doris Burke, Fortune, 3-22-04) Avastin, Erbitux, Gleevec ... The new wonder drugs might make you think we're finally beating this dreaded scourge. We're not. Here's how to turn the fight around. (Change the emphasis in funding studies; develop biomarkers to fight cancer in early, even pre-cancer, stages, as we fight heart disease, and so on.
• The Cost Conundrum: What a Texas town can teach us about health care (Atul Gawande, The New Yorker, 6-1-09)
• New Analysis Reexamines The Value Of Cancer Care In The United States Compared To Western Europe (Samir Soneji1,* and
JaeWon Yang, Health Affairs, March 2015) "Our results suggest that cancer care in the United States may provide less value than corresponding cancer care in Western Europe for many leading cancers."
• A consumer guide to handling disputes with your employer or private health plan, 2005 update, Kaiser Family Foundation
• Covering Health (American Health Care Journalists blog, "Keeping journalists informed--and connected")
• Cancer Patients, Lost in a Maze of Uneven Care (Denise Grady, NY Times, 7-29-07
• C-Span's Health Care Hub is a good place to find various town hall discussions, hearings, wonderful links. C-Span, you're wonderful!
• DrSteveB's blogroll (helpful Daily Kos blogger--and check his blogroll for other resources)
• Find Help (HRSA links to free and inexpensive care)
• Guaranteed Health Care (National Nurses Organizing Committee, California Nurses Association)
• Health Affairs (the policy journal of the health sphere). See in particular the Health Affairs blog , which, during the Supreme Court heartings on "Obamacare" has entries such as Wendy Mariner On The Supreme Court’s Individual Mandate Oral Argument: The Search For A Limiting Principle
• Health Care Costs Monitor (The Hastings Center, commentary and opinion on cost control in the implementation of health care reform)
• Why Angelina Jolie Paid Too Much for the Test That Saved Her Life (Yuval Rosenberg, The Fiscal Times, 5-16-13). Related story: Who Owns Your Genes? Supreme Court Will Decide (Fiscal Times, 3-11-13)
• Health Wonk Review (a compendium of the best of the health policy blogs)
• Health Blog WSJ's blog on health and the business of health
• Physicians for a National Health Program (PNHP)
• Bitter Pill: Why Medical Bills Are Killing Us (Steven Brill, Time Magazine, on Byliner, 3-4-13). Following the money, Brill finds that there is "no such thing as a free market in healthcare, if one defines a free market as a place where there is some balance of power between the buyer and the seller. Instead, healthcare is – except when Medicare is the buyer – a lopsided seller’s market. That became clear at both ends of the money trails I followed – from the patients’ lack of any knowledge of what they were buying or its prices, much less any leverage to bargain over it, to the sellers’ ability and willingness to charge absurdly high prices on everything from gauze pads to ambulance services to cancer wonder drugs."
The only people along the supply chain who were not reaping a bonanza from this imbalance were "those actually treating the patients -- the nurses and doctors (unless the doctors were gaming the system by reaping consulting fees from drug or device makers or setting up diagnostic clinics in their practices in order to steer patients there for expensive tests)." The full 36-page article can be downloaded here.
• The Conspiracy To End Cancer (Bill Saporito, Time magazine, 4-1-13). The hero scientist who defeats cancer will likely never exist. No exalted individual, no victory celebration, no Marie Curie or Jonas Salk, who in 1955, after he created the first polio vaccine, was asked, So what’s next? Cancer? — as if a doctor finished with one disease could simply shift his attention to another, like a chef turning from the soup to the entrée." It's going to mean many teams working together. "For investigators, it means changes in the way careers are developed, the way data — and especially credit for achievement — are shared. For institutions, team research means changes in contracts, compensation, titles and the path of intellectual property. For pharmaceutical companies, it means restructuring the way experimental drugs are allocated and clinical trials are conducted."
• HELP Is on the Way (Paul Krugman on why universal health coverage is affordable)
Health Insurance Consumer Information (news you can use), with blogs that follow the health care debate and discuss news of health insurance coverage around the country, and a Consumer Guide for Getting and Keeping Health Insurance for each state and the District of Columbia. The American Cancer Society and the Robert Wood Johnson Foundation and other organizations provide support for this research by The Georgetown University Health Policy Institute. Worth checking out.
• Health Insurance Woes: My $22,000 Bill for Having a Baby (And I had coverage for maternity care! Sarah Wildman, DoubleX, 8-3-09). "Our insurer, CareFirst BlueCross BlueShield, sold us exactly the type of flawed policy—riddled with holes and exceptions—that the health care reform bills in Congress should try to do away with. The “maternity” coverage we purchased didn’t cover my labor, delivery, or hospital stay. It was a sham."..."The individual insurance market is like that old joke about the food being terrible and the portions too small; it’s expensive, shoddy, and deeply unsatisfying. Those of us who buy into it are not protected by the federal and state laws that govern employer-based health care. In fact, there’s no one looking out for us at all."
• Lessons of a $618,616 Death (Amanda Bennett, with Charles Babcock, for Bloomberg Businessweek 3-4-10). Early discovery of kidney cancer gave Bennett's husband years more life than he would otherwise have had. But analyzing all the medical bills after his death was enlightening. "The documents revealed an economic system in which the sellers don't set the prices and the buyers don't know what they are. Prices bear little relation to demand or how well goods and services work."
• Medical Science and Practice in Conflict (Kevin Sack, NYTimes, 11-20-09, on how the consumer public may see evidence-based medicine as a step toward rationing)
• Physicians for a National Health Program (supports single-payer national health insurance)
• Reach of Subsidies Is Critical Issue for Health Plan (Robert Pear, NY Times, 7-26-09—on another important issue: where the money comes from to cover the costs of the formerly uninsured)
• Science Blogs (Health)
• SurveyUSA News Poll on Health Care Data (showing public opinion on various aspects of the health care debate, by gender, race, party affiliation, ideology, level of college education, income,region, and age)
• Why markets can’t cure healthcare by Paul Krugman (The Conscience of a Liberal, NY Times, 7-25-09).
You can watch Michael Moore's documentary, Sicko online. You can hear on Bill Moyers' interview with Wendell Potter how the insurance industry planned to defuse reactions to Moore's documentary. As Potter states: "The industry has always tried to make Americans think that government-run systems are the worst thing that could possibly happen to them, that if you even consider that, you're heading down on the slippery slope towards socialism. So they have used scare tactics for years and years and years, to keep that from happening. If there were a broader program like our Medicare program, it could potentially reduce the profits of these big companies. So that is their biggest concern." Potter himself says of the documentary, "I thought that he hit the nail on the head with his movie. But the industry, from the moment that the industry learned that Michael Moore was taking on the health care industry, it was really concerned."
Godwin's Law: "As a Usenet discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches"
~ Mike Godwin, creator of Godwin's Rule of Nazi Analogies, fearing glib use of the term will dilute the meaning of "Never Again"
Carcinoma, melanoma and other skin cancers
See also separate subsection on Melanoma, the more dangerous form of skin cancerThere are three basic types of skin cancer:
basal cell carcinoma (BCC),
squamous cell carcinoma (SCC),
and melanoma.
The first two skin cancers are grouped together as non-melanoma skin cancers.
• Seborrheic keratoses (American Academy of Dermatology) See a dermatologist if it "Looks like dry, flat, rough, and scaly patches or spots. It could be precancerous growths, actinic keratosis, which can progress to a type of skin cancer."
• Skin care and aging (National Institute on Aging, NIH) Check your skin once a month for things that may be signs of cancer. Skin cancer is rarely painful. Look for changes such as a new growth, a sore that doesn’t heal, or a bleeding mole.
Check moles, birthmarks, or other parts of the skin for the “ABCDEs”
A = Asymmetry (one half of the growth looks different from the other half)
B = Borders that are irregular
C = Color changes or more than one color
D = Diameter greater than the size of a pencil eraser
E = Evolving; meaning the growth changes in size, shape, symptoms (itching, tenderness), surface (especially bleeding), or shades of color
See your doctor right away if you have any of these signs to make sure it is not skin cancer.
• What’s Keeping the US From Allowing Better Sunscreens? (Michael Scaturro, KFF Health, 5-5-24) A decade after Congress told the FDA to expedite the approval of more effective sunscreens, the federal government still has not approved sunscreen ingredients that are safely being used around the world. Meanwhile, skin cancer is the nation's most common cancer.
• How to Avoid One of the Deadliest Forms of Skin Cancer (Ted Alcorn, NY Times, 4-15-24) We asked experts what to know about melanoma symptoms, treatment and prevention.
Look out for “ugly ducklings,” meaning abnormalities that stand out for any reason.
"Most melanomas appear as flat or slightly elevated blotches of dark color on skin that has been frequently exposed to ultraviolet light, such as the scalp and face, arms, back and legs (though they can occur on areas that have never been exposed to the sun, too). In a smaller share of cases, the growth may appear as a dark- or red-colored bump and grow down into the skin, which can make it more difficult to detect.
"A less common form, lentigo maligna melanoma, mostly afflicts older adults who have had significant sun exposure, and often appears as abnormally-shaped tan or brown spots on their heads or necks. An even rarer type, called acral lentiginous melanoma, occurs on the hands and feet (specifically the soles, palms, fingers, toes or nail beds) and accounts for more than half of melanoma cases in those who are not white.
• Symptoms of Skin Cancer (Timothy DiChiara, VeryWellHealth, 8-16-21) Since there are no general screening guidelines for skin cancer, most people need to rely on recognizing the signs and symptoms of the disease to catch it as early as possible.
Warning Signs of Squamous Cell Carcinoma, Basal Cell Carcinoma, and Melanoma:
Squamous cell carcinomas may produce a skin lesion that is wart-like and scaly, with a depression (ulcer) in the center.
Basal cell cancers are often white, pearly, or flesh-colored, dome-like lumps with a waxy appearance, and they can ulcerate.
Signs of melanoma often include a new or existing mole that has irregular borders or elevation, varies in color, or is changing in other ways. Complications of skin cancer, such as metastases, may lead to symptoms as well.
Melanoma can metastasize. Skin squamous cell cancers only do so very rarely, and basal cell cancer almost never will.
• Slide show: Melanoma pictures to help identify skin cancer (Mayo Clinic) ABCDE guide: Look for asymmetry, border irregularity, color changes, diameter, evolving. "Look for changes over time, such as a mole that grows in size or that changes color or shape. Moles may also evolve to develop new signs and symptoms, such as new itchiness or bleeding."
• What's to know about carcinoma? (Markus MacGill, Medical News Today, 12-18-18) Skin cancer is the most common form of cancer in the United States. Basal cell carcinoma and squamous cell carcinoma are the two most common types of skin cancer. The third most common skin cancer is melanoma, which is more severe and causes the most deaths.
• What’s the Difference Between Melanoma and Skin Cancer? (Dana Farber, 5-14-14) Discusses melanoma, squamous cell carcinoma and basal cell carcinoma.
• Skin Cancer Foundation
• Skin lesion biopsy (Medline Plus, National Library of Medicine, NIH)
• Vitamin B3 Is Found to Help People Prone to Some Types of Skin Cancer (Andrew Pollack, Business Day, NY Times, 5-13-15) In a clinical trial, people who took two pills a day of nicotinamide, a form of vitamin B3 available as a nutritional supplement, had a 23 percent lower risk of developing non-melanoma skin cancer than those who took placebo pills.
• Types of carcinoma (Cancer-Symptoms.com)
• Skin Cancer (Medline Plus, National Library of Medicine, NIH)
• Types of skin cancer (American Academy of Dermatology, AAD)
• What’s New in Basal and Squamous Cell Skin Cancer Research? (American Cancer Society)
• Basal Cell Carcinoma: Pathogenesis, Epidemiology, Clinical Features, Diagnosis, Histopathology, and Management (Alexander G. Marzuka and Samuel E. Book, Yale Journal of Biology and Medicine, June 2015, via PubMed)
• Topical skin creams effective to treat superficial basal cell carcinoma: New study (EurekAlert, 6-2-16) Investigators report on three-year follow-up of superficial BCC patients treated topically with non-surgical, noninvasive therapies in the Journal of Investigative Dermatology. HealthNewsReview evaluates and reports: Release offers thorough comparison of treatments for superficial skin cancers
• Squamous cell skin cancer (Medline Plus, National Library of Medicine, NIH)
Melanoma
See also the broader Carcinoma and other skin cancers
• Moles Versus Melanoma Skin Cancer: Learn to Tell the Difference with Pictures (About Health). The ABCDE
• 4 Warning Signs of Melanoma That Are Easy to Miss (Rachel Nania, AARP, 7-9-21) This dangerous skin cancer can take on odd forms and pop up in unexpected places. According to the CDC, the most common risk factors, include:
A lighter natural skin color
Skin that burns, freckles, reddens easily or becomes painful in the sun
Blue or green eyes
Blond or red hair
More than 50 moles
A family history of skin cancer
A personal history of skin cancer.
• Melanoma (Skin Cancer Foundation) How to tell the difference between a mole and melanoma. Warning signs of melanoma include asymmetry in a growth, irregular borders, uneven coloring, and a large diameter (larger than a pencil eraser). Caught early, melanoma is highly curable.
• Recognizing Melanoma: What It Is, What It Isn't ( Charles Bankhead, MedPage Today). Excellent long explanation, covering main factors as well as Congenital Moles, Spitz Nevus, Actinic Keratoses, and Seborrheic Keratosis.
• Melanoma (Medical Journeys, MedPage Today, 2022) An excellent series of explanations for patients.
---Melanoma: Epidemiology, Diagnosis, and Treatment Evolving clinical landscape with more therapy options and improved survival
---Is What You're Seeing Harmless or Is It Melanoma? How to distinguish benign skin lesions from melanoma
---Is It Melanoma or Something Else? What a biopsy can reveal about a suspicious-looking skin lesion.Biopsy techniques, interpreting the pathology report, recognizing key terms
---Case Study: The Dangers of Melanoma RecurrenceBefore falling into a coma, this 41-year-old woman had been free of melanoma for 16 years
---What to Know about Treating Early-Stage Melanoma Wide excision, adequate margins, options for adjuvant therapy
---Managing Unresectable/Metastatic Melanoma: What to Know New options for systemic therapy have improved outcomes for patients with advanced melanoma
---Case Study: Did This Melanoma Metastasize or Is It Something Else?Cord formation in the axilla offered a clue
---Sorting Through Therapeutic Options for Advanced Melanoma More effective therapy, more treatment choices, more considerations for clinical decisions
---Recurrent Melanoma: Navigating the Clinical Pathways Seeking the optimal strategy for the individual patient
---Follow-Up Care for Melanoma General and stage-specific advice, consideration of side effects
---Melanoma: Palliative and End-of-Life Care Focus should be on patient needs, wishes, and comfort
• Skin Cancer Is a Risk No Matter the Skin Tone. But It May Be Overlooked in People With Dark Skin. (Sandy West, KHN, 8-5-22) Skin cancer is often missed or misdiagnosed in Black patients. Skin cancer rates are lower for people with dark skin tones. Melanoma is more than 20 times as common in white people as in African Americans. But overall, Black patients are more likely to be diagnosed with various forms of skin cancer at more advanced stages and have a higher mortality rate. The five-year melanoma survival rate among non-Hispanic Black people is 66%, compared with 90% for non-Hispanic white people. And 1 in 3 Black men or women diagnosed with melanoma in the U.S. die of the disease, compared with at least 1 in 7 for non-Hispanic white people. Dermatology has traditionally been one of the most competitive specialties in medicine, and has traditionally created barriers for Black medical students who want to pursue dermatology.
• Slide show: Melanoma pictures to help identify skin cancer (Mayo Clinic)
• What is Ocular Melanoma? (Daniel Porter, American Academy of Ophthalmology, 11-17-22) Ocular melanoma (melanoma in or around the eye) is a type of cancer that develops in the cells that produce pigment. Although it is the most common eye cancer in adults, ocular melanoma is very rare. It typically doesn’t cause early signs or symptoms, which is why it is so important to see your ophthalmologist regularly.
• A Doctor Discusses McCain's Prognosis (CBS News, 8-17-2000) Melanoma expert Dr. Darrell Rigel answered question about skin cancer and Sen. McCain's case on the CBS News' Early Show. "Melanoma is a most clear-cut case of a cancer where if you catch it early and treat it early, it's really pretty treatable. But once it has spread, there is nothing that is effective for it. The only thing you can use for melanoma, once it's spread, is immunotherapy, using treatments to help the body's immune response to fight off the melanoma....Even a melanoma the size of a dime on your skin has a 50% chance of having already spread."
• Is Sunscreen the New Margarine? (Rowan Jacobsen, Outside, 1-10-19) Current guidelines for sun exposure are unhealthy and unscientific, controversial new research suggests. Vitamin D is a hormone manufactured by the skin with the help of sunlight. It’s difficult to obtain in sufficient quantities through diet and vitamin D supplementation has failed spectacularly in clinical trials. True, the sun worshippers had a higher incidence of [melanoma]—but they were eight times less likely to die from it. Over the 20 years of the study, sun avoiders were twice as likely to die as sun worshippers. In a 2016 study published in the Journal of Internal Medicine, Lindqvist’s team put it in perspective: “Avoidance of sun exposure is a risk factor of a similar magnitude as smoking, in terms of life expectancy.”
• A systematic review of treatment modalities for primary basal cell carcinomas. (Thissen MR1, Neumann MH, Schouten LJ, Arch. Dermatol., via PubMed, 10-99) "Recurrence rates for different therapies could not be compared because of a lack of uniformity in the method of reporting, so evidence-based guidelines could not be developed. We surmise that Mohs micrographic surgery should be used mainly for larger, morphea-type BCCs located in danger zones. For smaller BCCs of the nodular and superficial types, surgical excision remains the first treatment of choice. Other treatment modalities can be used in patients in whom surgery is contraindicated. Immunotherapy and photodynamic therapy are still investigative."
• My Childhood in the California Sun Gave Me Skin Cancer...and It Was Worth It (Gina Harlow, Narratively) Maybe it was one day, years later, as the dermatologist shined her magic lamp on my face, exposing a hidden map of spots, looking much like the surface of the moon, or maybe it was one spot in particular that I could see in any light, that finally made me lose my affection for amber. That spot, the doctor said, was fine. Until a while later when it wasn’t. Melanoma.... I wouldn’t trade those carefree beach days for anything.
• Potential new treatment identified for drug-resistant skin cancer(Stanford Medicine News Center, 2-5-18)\
• These two drugs can eliminate one in five skin cancer tumours (David Nield, Science Alert, 4-24-16) "You might not have heard of ipilimumab and nivolumab before, and that's okay, but these two immunotherapy drugs could be the future of skin cancer treatment. Studies have shown that a new treatment using both of these drugs together can clear melanoma skin cancer tumours in 22 percent of cases.... In a recent trial involving 142 patients, where both drugs were used as treatment, 69 percent of patients were still alive after two years, compared with 53 percent who were using ipilimumab alone."
• Skin Cancers Rise, Along With Questionable Treatments(Katie Hafner and Griffin Palmer, NY Times, 11-20-17)
• Yes, melanoma can be overdiagnosed, but news stories like these don’t discuss it (Kevin Lomangino, HealthNewsReview, 6-4-18) Artificial intelligence is helping diagnose more melanoma, but is that a good thing? Do changes in dermatology practice promote unnecessary and wasteful care?
• I’m a Neuroscientist Who Studies Mental Illness. Here’s What Happened When I Lost My Own Mind. (Barbara K. Lipska, Washingtonian, 4-8-18) Lipska, an expert in schizophrenia, director of the Human Brain Collection Core at NIH’s National Institute of Mental Health, never knew that cancer and its complications could cause the same symptoms as the disease she studied—until she was diagnosed with melanoma. "I've studied mental illness my entire career. Yet when I began my descent into the very same sort of madness that I'd researched, I had no idea what was happening. This is the story of my journey into insanity—and back." Excerpted from the book
The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery (Lipska with Elaine McArdle)
• Melanoma: Two Drug Combo Halves Death Risk (Charles Bankhead, Medpage Today, 6-3-15) Progression, tumor growth slowed, side effects considerable but manageable. An immunotherapy combination for untreated melanoma reduced the risk of death or progression by more than half as compared with a drug currently used as a standard of care, a large randomized trial showed. ""The most important thing this study shows is that we are beginning to define which patients may benefit from one drug and those that may benefit from both drugs. That will only inform conversations about toxicity for patients and physicians as they decide the treatment course."
• This oncologist says the USPSTF gets it wrong on skin cancer screening (Morganna Freeman, Kevin MD, 8-9-16) " In sum, it is a public disservice to say to patients (and physicians) that skin cancer screening is not an effective means of prevention." "Melanoma is the leading cause of cancer death in women aged 25 to 30; not surprisingly, these same women have likely been indoor tanners (the highest rate of use is among Caucasian females age 16 to 29). The National Health Interview Survey estimates 7.8 million women and 1.9 million men in the United States tan indoors each year, and more than 400,000 cases of skin cancer may be related...."
• Lawn, amusing but thought-provoking public service ad. You check your lawn for bad spots; why not your skin?
• Melanoma: You Need to Know (Dana Farber, 5-5-14)
• Mohs micrographic surgery (allows skin cancer to be removed with less damage to the healthy skin around it).
• MPIP: Melanoma Patients Information Page. The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends.
• Melanoma Resources(links to melanoma information on the internet, provided by two participants in MPIP, above). For example, here are links to articles about melanoma.
• After Long Fight, Drug Gives Sudden Reprieve (Amy Harmon, NY Times, 2-22-10) The trial of a melanoma drug offers a glimpse at a new kind of therapy tailored to the genetic profile of a cancer. For the melanoma patients who signed on to try a drug known as PLX4032, the clinical trial was a last resort. Their bodies were riddled with tumors, leaving them almost certainly just months to live. But a few weeks after taking their first dose, nearly all of them began to recover. Part of a series: Target Cancer.
• Mother who used sunbeds and never wore cream shares shocking picture of her skin cancer scar to warn others of the dangers(photo, Daily Mail, UK)
• Survival at 1 Year With MK-3475 in Melanoma (Nick Mulcahy, Medscape Specialty, 11-21-13)
• News for late-stage melanoma patients (T.J. Sharpe, Philly.com, 3-11-14). "Merck announced this week that it is expanding access for MK-3475 – the anti-PD-1 drug I have been taking for nearly a year. The drug, also known by its generic name of lambrolizumab, has already been granted Breakthrough Therapy status with the FDA, allowing the pharmaceutical company to work with the FDA to expedite approval of the drug. Now, a significantly greater population will be able to receive this treatment well before full approval is given."
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer "I am now face to face with dying. But I am not finished with living." He is living sign ocular melanoma, for which about 50 percent of cases metastasize.
• When the System Fails (Sondra S. Crosby, The End, NY Times, 2-25-15) "The pathology report was a punch in the gut: malignant melanoma. The surgeon had not called me about the diagnosis. My patient did not understand it; he had never heard of melanoma."
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer "I am now face to face with dying. But I am not finished with living." He has ocular melanoma, for which about 50 percent of cases metastasize.
[Back to Top]
• Back to Information about specific cancers
Immunotherapy for cancer
Slowly we are seeing a shift away from chemotherapy toward targeting the host system, allowing the immune system to rally the troops against cancer cells.
See also, BELOW, advances in CAR T-cell therapy
• Immunotherapy for Cancer SciLine's excellent overview and primer.
• Immunotherapy to Treat Cancer (National Cancer Institute) Another overview.
• Six tips for writing accurately about cancer immunotherapy drugs (Joy Victory, Health News Review, 10-11-16) Equally helpful for reading about the topic. Immunotherapy is expensive and not always covered by insurance. As HNR recommends (among other tips):
"Pay close attention to the endpoints in immunotherapy studies and make sure you understand how they’re assessing a treatment’s effectiveness. If they use surrogate endpoints, be extra cautious about possible hype.
"Find out what specifically the drug does for the patient: Extend life? Improve the quality of life?
"Pay attention to side effects and toxicity. Though these drugs can be highly effective, they aren’t necessarily a walk in the park for your body for many people.
"Consider these drugs’ roles within the context of precision oncology."
• The Breakthrough: Immunotherapy and the Race to Cure Cancer by Charles Graeber. Read his important Advance Copy comments (National Association of Science Writers), which start: "The Breakthrough started as a surprising fact: cancer had evolved “secret handshakes” that tricked our killer immune cells, and we’d recently discovered some of those tricks and could block them, unleashing the immune system to fight cancer the way it did other diseases. My reaction was: What, really? At the time (nearly five years ago), I’d heard nothing about it. Or, rather, I’d failed to recognize it as a penicillin moment in our war against cancer. This was new and complex news from a field (cancer immunotherapy) that had spent decades in scientific disgrace; an old idea that hadn’t worked in practice until, suddenly and recently, it did. Most doctors had been trained not to trust it. Siddhartha Mukherjee doesn’t even mention cancer immunotherapy in The Emperor of All Maladies." Read the whole short piece. More than 3000 clinical trials of immunotherapeutic drugs for cancer are in process.
• Why a New Immunotherapy for Lung Cancer Works for Only Some People (Eva Kiesler, Memorial Sloan-Kettering Cancer Center, 4-16-15) Immunotherapy with a new drug called a PD-1 inhibitor can be a powerful treatment option for people with non-small cell lung cancer (NSCLC), but thus far doctors haven’t been able to predict which patients it will work for. Now a Memorial Sloan Kettering study shows the drug is more likely to be effective in people whose tumor DNA contains a lot of mutations caused by exposure to tobacco smoke.
• Antibody Drug Nomenclature: What is INN a Name? WHO Has Been Changing Them? (Paul J. Carter, Genentech, Antibody Engineering & Therapeutics, 12-9-15) Introduction to International Nonproprietary Names (INNs) for antibodies including common origin substems: -ximab, -zumab and –umab.
• What You Need to Know About Immunotherapy Side Effects Laura Porter, Cancer.net, 2-14-18) "Immunotherapy is exciting, but we also need to be aware of the risks of taking the brakes off the immune system."
• Killing Cancer (Scott Pelley, 60 Minutes, 3-29-15) 60 Minutes follows brain cancer patients in a Duke University clinical trial of a therapy that uses a re-engineered polio virus to kill cancer cells in a glioblastoma. An amazing story.
• 2018 Nobel Prize in Medicine Awarded to 2 Cancer Immunotherapy Researchers (Denise Grady, NY Times, 10-1-18) Dr. James P. Allison and Dr. Tasuku Honjo, working separately, showed how certain proteins act as “brakes” on the immune system’s T-cells, limiting their ability to attack cancer cells, and how suppressing those proteins could transform the body’s ability to fight cancer.
• Cancer researchers worry immunotherapy may hasten growth of tumors in some patients (Bob Tedeschi, STAT, 4-3-17) “The potential benefit of immunotherapy far outweighs the worry by miles at this time, so nobody should give up that option.”~ R Antoni Ribas, Ronald Reagan UCLA Medical Center
• Harnessing the Immune System to Fight Cancer (Denise Grady, NY Times, 7-30-16) New drugs and methods of altering a patient’s own immune cells are helping some cancer patients — but not all — even when standard treatments fail. Check out follow-up Cell War stories linked to.
• Cancer immunotherapy: more reason for concern? (Michael Joyce, HealthNewsReview, 4-5-17
• In Boston Courtroom, Cancer Research Titans Clash Over Patents Likely Worth Billions (Carey Goldberg, CommonHealth, WBUR, 2-15-19) Drs. Allison and Honjo are in court battling over patents related to immunotherapy, the revolutionary new type of cancer treatment that unleashes the body's own immune system. "Everyone wants to work in the area because it's so important," said Dr. Gordon Freeman. "Really the best and the brightest scientists, and the most innovative and cutting-edge technologies, are being applied to the problems of immunotherapy." But the focus of the federal trial in Boston is nearly 20 years ago, when some of the seminal science that led to immunotherapy was done. At the center of the case are a half-dozen key patents that list Honjo and Japanese colleagues as inventors, but not Freeman and another American colleague. The battle over work that led to the Nobel Prize involves issues of scientific credit, honesty and reliability, one expert says, and "if you add money to the mix, it makes a particularly potent poison."
• Too many stories ignore or under-report the harms of cancer immunotherapies. Here’s what the public needs to know. (Joy Victory, Health News Review, 12-8-16)
• Cheat Sheet on Cancer Immunotherapy (Blythe Adamson, Infectious Economics, 2-1-18) A simple one-page summary to visualize where various immunotherapy products are in the process of gaining approval.
• Panelists break down the realities of precision medicine and immunotherapy (Rebecca Vesely, Covering Health, ACCJ, 5-5-19) Precision medicine for oncology is precisely targeting a tumor and optimizing therapy to a specific patient while immunotherapy harnesses a person’s own immune system to target and fight off cancer cells. These novel treatments aren’t available for all cancer types and are so expensive that they may not be available to everyone. Panelists worry that too much focus on immunotherapy could detract attention from other promising therapies.
• Regeneron, with a new drug, tries to elbow its way into a crowded immunotherapy market (Damian Garde, STAT, 9-28-18) Regeneron Pharmaceuticals (REGN) has won Food and Drug Administration approval for a new cancer therapy, lining up behind five marketed treatments that work by removing brakes on the immune system to turn the body’s defenses against tumors. The company, alongside partner Sanofi (SNY), is entering a crowded market in which it is years behind the leaders, who have reaped billions of dollars in sales while racking up FDA approvals in more than a dozen tumor types. But Regeneron believes that, with some clever positioning and combination treatments, it can outfox its rivals and build its drug, cemiplimab, into a contender in the field.
• What you need to know about immune therapy: A remarkable cancer breakthrough (Amy Paturel, Prevention, Nov 2016). “The reason immunotherapy is so promising is because we’re not treatng the cancer or tumor cells—we’re treating the immune system,” says Padmanee Sharma, a professor of genitourinary medical oncology and immunology at MD Anderson Cancer Center in Houston. “Once we get the immune system working correctly, it shouldn’t matter which type of tumor we’re targeting. This really represents a paradigm shift in cancer research and treatment, resulting in unprecedented responses in melanoma and lung and kidney cancers,” Sharma says. Q&A overview of this important new approach to treatment.
• China's First Cancer Immunotherapy Will Cost Half Of What It Costs In The U.S. (Rebecca Robbins, STAT, 8-21-18) The blockbuster cancer drug Opdivo will be sold for about $84,000 per year in the Chinese market, before discounts — meaning that China’s first cancer immunotherapy will come at about half the price it costs in the U.S. The price tag for the Bristol-Myers Squibb drug, which is in line with analysts’ expectations, will be an early test of whether the Chinese market can support a coming wave of innovative but pricey medicines.
• Researchers puzzle over deadly heart condition tied to blockbuster cancer drugs (Meghana Keshavan, STAT, 3-20-18) As Checkpoint Inhibitors Spread, So Does Risk of Deadly Heart Condition. Clinicians have seen remarkable progress in cancer patients treated with the class of immunotherapy drugs known as checkpoint inhibitors. In a small number of patients, they have also seen a rare but fatal cardiovascular side effect known as myocarditis. Now, with checkpoint inhibitors likely to be approved for a wider array of cancers, researchers are concerned that it’s only a matter of time before more patients develop the same autoimmune response. They still don’t know why. See also Checkpoint Inhibitors Linked to Dangerous Heart Problems
• ABCs of Cancer Immunology What a practicing oncologist needs to know. Gregory L. Beatty, MD, PhD, brings his insight to a comprehensive overview of cancer immunotherapy, beginning with the fundamental laws of the immune system and incorporating the challenges for immunotherapy, efforts to restore T cell immune surveillance, checkpoint immunotherapy in melanoma and other cancers, biomarkers of cancer immunogenicity, CAR T cells in cancer and the future for cancer immunotherapy. (MedPage Today)
• 'Living Drug' That Fights Cancer By Harnessing Immune System Clears Key Hurdle (Rob Stein, Shots/Treatments, All Things Considered, NPR, 7-12-17) The treatment takes cells from a patient's body, modifies the genes, and then reinfuses those modified cells back into the person who has cancer. The treatment is part of one of the most important developments in cancer research in decades — finding ways to harness the body's own immune system to fight cancer. And while it has generated much hope, there are some concerns about its safety over the long term — and its cost.
• Setting the Body’s ‘Serial Killers’ Loose on Cancer, New York Times series on Immunotherapy. After a long, intense pursuit, researchers are close to bringing to market a daring new treatment: cell therapy that turbocharges the immune system to fight cancer.
---Harnessing the Immune System to Fight Cancer (Denise Grady, NY Times, 7-30-16) New drugs and methods of altering a patient’s own immune cells are helping some cancer patients — but not all — even when standard treatments fail.
---Immunotherapy Offers Hope to a Cancer Patient, but No Certainty (Matt Richtel, Health, NY Times, 7-31-16) Drawing on his immune system to fight Hodgkin’s lymphoma, my friend saw a stunning improvement. Then came the relapses.
---Immune System, Unleashed by Cancer Therapies, Can Attack Organs (Matt Richtel, Health, NY Times, 12-3-16)
---1 Patient, 7 Tumors and 100 Billion Cells Equal 1 Striking Recovery (Denise Grady, Health, NY Times, 12-7-16) The remarkable recovery of a woman with advanced colon cancer, after treatment with cells from her own immune system, may lead to new options for thousands of other patients with colon or pancreatic cancer, researchers are reporting.
---Harnessing the U.S. Taxpayer to Fight Cancer and Make Profits (Matt Richtel and Andrew Pollack, Health, Public Labs, Corporate Gains, NY Times, 12-19-16) "Kite’s treatment, a form of immunotherapy called CAR-T, was initially developed by a team of researchers at the National Cancer Institute, led by a longtime friend and mentor of Dr. Belldegrun. Now Kite pays several million a year to the government to support continuing research dedicated to the company’s efforts. The relationship puts American taxpayers squarely in the middle of one of the hottest new drug markets. It also raises a question: Are taxpayers getting a good deal? Defenders say that the partnership will likely bring a lifesaving treatment to patients, something the government cannot really do by itself, and that that is what matters most. Critics say that taxpayers will end up paying twice for the same drug — once to support its development and a second time to buy it — while the company reaps the financial benefit."
---How to Find Clinical Trials for Experimental Cancer Treatments (Denise Grady, NY Times, 12-23-16)
• What is the immune system and what role does it have in biological therapy for cancer? (National Cancer Institute). One part of an NCI fact sheet: Biological Therapies for Cancer
• Who Should Be Treated with Immunotherapy? (Dana-Farber Cancer Institute, July 2017)
The Types of Cancer That Immunotherapy Can Help Treat (HealthiNation, video and text). Along right side you can click to see other videos on immunotherapy.
• Adrienne Skinner: Living Life to the Fullest Thanks to Research (AACR Progress Report, American Association for Cancer Research, 2017 survivors) Adrienne Skinner: "I was diagnosed with metastatic ampullary cancer in February 2013. After 13 months of various chemotherapies, none of which kept the cancer at bay for more than a few months, my oncologist told me that my best hope for a good outcome was a clinical trial testing an immunotherapy called pembrolizumab (Keytruda). After 2½ months, the cancer was gone. I’m back to living my life as a busy working single mother of four daughters. "
• New Promise For Immunotherapy Cancer Drugs (Diane Rehm talks with two cancer experts and one immunothereapy patient with ocular melanoma, 4-21-16) Immunotherapy—using the body’s own immune defenses to fight cancer—has already shown significant promise. Now, the latest research says new immunotherapy drugs could dramatically increase survival rates for difficult-to-treat cancers like deadly melanomas, and may be effective in dozens of other cancers including those driven by viruses.
• Immunotherapy: Questions Persist Despite Successes (Shalmali Pal, Medpage Today. and Vinay Gupta, ASCO, 6-12-16) Dosing, biomarkers, cost among unresolved issues.
• One person’s cancer can be fought using someone else’s immune cells, study finds (Bec Crew, Science Alert, 5-23-16) "For the first time, scientists have shown that even if a patient’s own immune cells are incapable of recognising and attacking tumours, someone else’s immune cells might be able to. "In a new study, scientists have shown that by inserting certain components of healthy donor immune cells (or T cells) into the malfunctioning immune cells of a cancer patient, they can 'teach' these cells how to recognise cancer cells and attack them."
• $250 million, 300 scientists and 40 labs: Sean Parker’s revolutionary project to ‘solve’ cancer (Ariana Eunjung Cha, WaPo, 4-13-16) Six institutions — Stanford, the University of California, San Francisco, and University of California, Los Angeles, the University of Pennsylvania, MD Anderson Cancer Center and Memorial Sloan Kettering Cancer Center — have signed on. "An estimated 1,500 treatments are currently in development, but getting into a clinical trial can be brutally selective and the drugs themselves can run upwards of $100,000. Moreover, even the drugs that work appear to only do so on a select group of patients. With other patients with the same condition, they are ineffective or prove so toxic that they end up making patients worse — and scientists have not been able to figure out why." Profile: Sean Parker, Silicon Valley’s bad boy genius, wants to kick the *!$% out of cancer (Ariana Eunjung Cha, WaPo, 4-15-16) "Parker is well aware of the painful inequality that exists in immunotherapy, with most patients finding experimental drugs impossible to obtain — and some of them prohibitively expensive. One main priority, he said, is to change that and make sure that any person who wants the treatments can try them. As of now, he says, only 200,000 of the 13.5 million Americans who have a history of cancer have ever tried the therapies."
• New, Life-Saving Cancer Treatments ( Elizabeth Agnvall, AARP Bulletin, March 2016) Immunotherapies and gene-targeted drugs are changing the course of some cancers — even allowing doctors to talk about a cure.
• Arthritis Emerges After Cancer Immunotherapy ( Nancy Walsh, Medpage Today, 6-17-16) In cancer treatment, a novel type of adverse effect
• New Findings Clarify How Immunotherapy Works — and Why, In Some People, It Doesn’t
• Why it’s too early to get excited about this ‘unprecedented’ new cancer treatment (Rachel Feltman, WaPo, 2-16-16) With the White House set to fund a cancer "moonshot" to the tune of $1 billion, many are looking to immunotherapy as the best hope for a cure — or at least a much better treatment — for cancer. One team's studies on a technique called adoptive T cell therapy are seeing stupendous results. The research is yet to be published, which means it hasn't been peer-reviewed (vouched for by scientists outside of the study), and is tough to evaluate. "Not even the excited researchers behind the findings really think this will be a cancer "cure." What they hope is that their therapy can finally usher immunotherapy into the ranks of standard cancer treatment — something that could be used routinely alongside chemotherapy, radiotherapy and surgical interventions."
• New Immunotherapy Vaccines Show Promise in Treating Brain Tumors (Dana Farber Cancer Institute, 1-19-15)
• Immunotherapy Strategies in the Treatment of Cancer (PDF, Hatem Soliman, Cancer Control, Jan.2013) Research on immunotherapy for breast cancer appears promising.
• Surviving Cancer Through Immunotherapy (30 Days 30 Stories, Cancer Research Institute)
• Canadian researcher says immunotherapy is a cancer-fighting miracle (Day 6 with Brent Bambury, CBC Radio, 4-28-16) Listen or read.
• Sean Parker Launches an Unprecedented Cancer Research Effort (Laura Lorenzetti, Fortune, 4-13-16) Parker gives $250 million through his foundation to launch the Parker Institute for Cancer Immunotherapy, a collaboration between some of the nation’s top cancer research institutes that aims to accelerate the development of breakthrough immune therapies. The unprecedented cancer research effort collates in a central location the work being done at six leading cancer centers: Memorial Sloan Kettering Cancer Center, Stanford Medicine, the University of California, Los Angeles, the University of California, San Francisco, the University of Texas MD Anderson Cancer Center, and University of Pennsylvania.
CAR T-cell therapy
When researching the topic try changing where the hyphens fall, as variations abound.
• CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers (National Cancer Institute, NIH) An excellent illustrated explanation.
A rapidly emerging immunotherapy approach is called adoptive cell transfer (ACT): collecting and using patients’ own immune cells to treat their cancer. There are several types of ACT (see “ACT: TILs, TCRs, and CARs”), but, thus far, the one that has advanced the furthest in clinical development is called CAR-T cell therapy. Until recently, the use of CAR T-cell therapy has been restricted to small clinical trials, largely in patients with advanced blood cancers. But these treatments have nevertheless captured the attention of researchers and the public alike because of the remarkable responses they have produced in some patients—both children and adults—for whom all other treatments had stopped working. A long and well-written explanation of developments in this field.
See also
---T-cell Transfer Therapy Another good explanation.
---New Drugs, New Side Effects: Complications of Cancer Immunotherapy (Edward Winstead, NCI, NIH, 2019)
• NCI Initiative Aims to Boost CAR T-Cell Therapy Clinical Trials (National Cancer Institute, 4-23-20) In 2010, an NCI research team published the first study of a new form of cancer treatment called CAR T-cell therapy, reporting on a single patient with advanced lymphoma whose disease, they recounted, “underwent a dramatic regression” following the treatment. The next year, researchers from the University of Pennsylvania reported a similar result using CAR T-cell therapy to treat a patient with an advanced form of leukemia. Within 7 years, the Food and Drug Administration (FDA) approved the first two CAR T-cell therapies, and with a third approval expected sometime this year, research groups around the world are rapidly developing new CAR T-cell therapies.
• Immunotherapy Is Changing Cancer Treatment Forever (Christopher Cox, Intelligencer, New York magazine, 7-15-24)
"His brain tumor was a hopeless case. Then an experimental medicine made it melt away."
Glioblastoma is the most common type of malignant brain cancer. It can strike at any age, and it’s uniformly fatal. The first step in treating the disease hasn’t changed in decades: “maximal safe resection,” a surgery to remove as much of the tumor as possible while preserving neurological function. Because glioblastoma is so adept at infiltrating the brain, the surgeon almost always leaves cancer behind, which quickly starts growing again. Some patients respond to radiation or the chemotherapy drug temozolomide, but even that adds months rather than years to the average survival time.
Within the past 20 years, however, a once unfashionable field called immunotherapy has upended all expectations in oncology. It proceeds from a simple premise: The human immune system is very good at attacking anything it registers as disease. Dr. Marcela Maus knew that though cancer has long confounded efforts to kill it, it has a vulnerability. Cancerous tissue is always made up of cells. And those cells have to be at least somewhat different from the other cells in the body, or they wouldn’t be cancer. If you could train the immune system’s T cells to recognize that difference, that would be the end of the disease.
A decade ago, when Maus was at the University of Pennsylvania, her mentor, the immunologist Carl June, developed an astonishingly effective CAR-T therapy for leukemia. The biggest question in oncology after that was whether this approach could also be used for solid tumors. For all the promise of immunotherapy, there are formidable obstacles. The first of these is cost. The complicated process of producing CAR-T cells also limits the number of people who can be treated. As more CAR-T treatments get FDA approval, however, cost and efficiency may improve.
Tom Fraser, participant No. 2 of three in the trial, was told there was no guarantee this treatment would work, but there was also no more promising trial anywhere in the world. In the weeks that followed his infusion, Tom suffered a cascade of complications: atrial fibrillation, mysterious infections, a punishing fever. The nurses swaddled him in blanket after blanket, but still he shook uncontrollably.... After many months, according to Debbie, he’s in better shape than he’s been in months. "Was it a temporary effect or a sign that the T cells were still active in his brain? We may only know years from now, and then only by implication, if a strong enough signal emerges from future CAR-T trials.If CAR-T therapy for glioblastoma eventually becomes standard of care — if Maus and others can reproduce and improve on the results she got for Tom Fraser — his name will forever be tied with the birth of this treatment." [H/T Nancy McKeon]
• CAR T-cell therapy in cancer (Nature Portfolio, Nature/Collection, 2-25-22) Cancer therapy using chimeric antigen receptor (CAR)-T-cells is one of the most exciting recent developments in cancer therapy. To date CAR-T-cells have been successfully used to treat persons with hematologic cancers, especially acute lymphoblastic leukemia (ALL), lymphomas and plasma cell myeloma (PCM). Although most studies are in persons with advanced lymphomas, some controversial data suggest CAR-T-cell therapy might replace autologous hematopoietic cell transplants in persons failing conventional therapies.
Includes long list of links to other papers on CAR-T-cell therapy.
• Staggering Prices Slow Insurers’ Coverage Of CAR-T Cancer Therapy (Michelle Andrews, KHN, 7-17-18) 'Patients whose blood cancers have failed to respond to repeated rounds of chemotherapy may be candidates for a new type of gene therapy that could send their cancers into remission for years. But the two approved therapies, with price tags of hundreds of thousands of dollars, have roiled the insurance approval process, leading to delays and, in some cases, denials of coverage, clinicians and analysts say. The therapy involves collecting patients’ own T cells, a type of white blood cell, genetically modifying them, and then infusing them back into patients, where they hunt down and kill cancer cells. Known as CAR-T cell therapy, it has been called a “living drug.” Two drugs, Kymriah and Yescarta, were approved last year to treat patients whose blood cancers haven’t responded to at least two other rounds of treatment. Kymriah is approved for people up to age 25 with a form of acute lymphoblastic leukemia, the most common cancer in children. Kymriah and Yescarta are both approved for adults with advanced lymphomas.' Some state Medicaid programs are not paying for the procedures, and Medicare’s complicated payment rates have hospitals concerned that it will not cover all the costs.
• CAR T-Cell Therapy Infographic (National Cancer Institute) This illustration shows the steps for creating CAR T-cell therapy, a type of treatment in which a patient's T cells (a type of immune system cell) are changed in the laboratory so they will attack cancer cells.
• Jim Allison: Breakthrough (Independent Lens, PBS, 4-27-2020) Allison led a research team exploring the mechanisms of T-cells, the immune system’s hunter-killer cells. In the 1990s, his team and another group showed there was a molecule on T-cells that acts like an off switch or a brake pedal when T-cells encounter an infected cell. Allison’s group developed an antibody to disable this off-switch and keep T-cells in attack mode. It helped usher in the use of immunotherapy to treat a variety of cancers.A fascinating and informative homage to a pioneering, harmonica-playing scientist who through long years slogging in the lab triumphed over a doubting medical establishment and in 2018 won the Nobel Prize for discovering the immune system’s role in defeating cancer--specifically developing Ipilimumab, a monoclonal antibody that works to activate the immune system by targeting CTLA-4, a protein receptor that downregulates the immune system.
• CAR-T cell therapy: current limitations and potential strategies (Robert C. Sterner & Rosalie M. Sterner, Blood Cancer Journal, 4-6-21) Chimeric antigen receptor (CAR-T cell therapy is a revolutionary new pillar in cancer treatment. Although treatment with CAR-T cells has produced remarkable clinical responses with certain subsets of B cell leukemia or lymphoma, many challenges limit the therapeutic efficacy of CAR-T cells in solid tumors and hematological malignancies. Barriers to effective CAR-T cell therapy include severe life-threatening toxicities, modest anti-tumor activity, antigen escape, restricted trafficking, and limited tumor infiltration. A solid introduction, with illustrations.
• In the U.S., scientists see barriers to the development of CAR-T therapies. In Spain, a hospital brews its own (Andrew Joseph, STAT,12-19-23) The patients were not here for one of the brand-name medicines — a Kymriah or Yescarta — that have shown the power of these cell-based approaches and helped reap their makers hundreds of millions of dollars. Rather, they would be receiving a CAR-T brewed up right here at Hospital Clínic de Barcelon
• From bench to bedside: the history and progress of CAR-T cell therapy (Aroshi Mitra, Amrita Barua, Luping Huang, Siddhartha Ganguly,Qin Feng, Bin He, Frontiers in Immunology, 5-15-23)
• Medicare will cover pioneering cancer treatment nationwide (Laurie McGinley, WaPo, 8-7-19) CAR- T cell therapy costs $375,000 or $475,000, depending on whether it is used for advanced lymphoma or pediatric leukemia. The complicated treatment involves extracting and genetically altering the patient’s T cells to attack a protein on the surface of cancer cells. The cells are then infused back into the patient. Hospital stays can add hundreds of thousands of dollars to the cost of care, but outpatient approaches may be coming.
• Considerations When Choosing a CAR T Cell Therapy in Lymphoma Transcript of Jeremy Abramson, MD, explaining the differences and how to select between available options.
• NIH is pressed to ensure affordable pricing before awarding a license for a CAR T therapy (Ed Silverman @Pharmalot, STAT Plus, 12-6-18) At issue are patent rights for an acute myeloid leukemia treatment the agency recently indicated would be awarded to a company called ElevateBio.
Complementary and alternative cancer therapies
• What Is Complementary and Alternative Medicine (CAM)? (NCI)
• The American Cancer Society Complete Guide to Complementary & Alternative Cancer Therapies (spells out the evidence, or not, of hundreds of therapies' effectiveness and side effects)
• The Risk of Alternative Cancer Treatments (Jane E. Brody, NY Times, 10-1-18) Avoiding evidence-based treatments in favor of untested ones can contribute to higher death rates, a Yale study found.
• Easing a patient’s pain — even without proof it works (Liz Kowalczyk, Boston Globe, 6-20-16) Dana-Farber is embarking on its largest expansion yet of unconventional therapies. Over the past year, it has taken the unusual step of offering reiki, an ancient Asian technique, and foot reflexology free of charge to adults and children — as well as acupuncture to adults — in its outpatient infusion clinics during chemotherapy treatments. A growing body of research supports acupuncture as a treatment for pain and nausea in oncology patients, but few high-quality studies exist on the effectiveness of reflexology and reiki. The investment by Dana-Farber, a leading cancer treatment center, underscores a growing willingness among mainstream medical institutions nationally to offer complementary therapies that appear to help patients — even without definitive proof.
• Alternative and Complementary Therapies (CancerGuide). Comments about books on alternative therapies and advice on a range of topics, including cancer and disability, being smart about group health insurance , and comments on a range of therapies, from Sun Soup to Shark Cartilage (including a sensible section on evaluating alternative therapies .
• About herbs, botanicals, and other alternative approaches to treating cancer (Q&As from Memorial Sloan-Kettering Cancer Center)
• My Alternative Cancer Diary (blog on alternative care for cancer, including nutritional approaches)
• Alternative Medicine Pros and Cons (Sara Calabro, Everyday Health, 8-25-09)
• Current Issues Regarding Complementary and Alternative Medicine (CAM) in the United States (C Lee Ventola, Pharmacy & Therapeutics, Aug 2010) first in a series of three articles on the use of complementary and alternative medicine (CAM) and dietary supplements.
Researching cancer (where to find reliable information)
• What is cancer? (National Cancer Institute, Defining cancer)
• Understanding Cancer (National Cancer Institute)
• Medline Plus (this government website offers primers on various forms of cancer, their causes, treatments, and resources to help patients cope with treatment.
• National Cancer Institute (a good source of info on new initiatives in cancer research and on various government programs that can help you)
• Managing Cancer Care (National Cancer Institute)
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• Push Hard for the Answers You Require (Denise Grady, NY Times, 7-29-07)
• Cancer Support Groups (National Cancer Institute)
• Understanding Health Insurance (American Cancer Society)
• Medicaid & CHIP coverage (Healthcare.gov, a federal website)
• Federal and State Benefit Programs (Livestrong)
• NCI Dictionary of Cancer Terms (National Cancer Institute). NCI is part of the National Institutes of Health (NIH), a federal U.S. organization that funds cancer research and training.
• NCI Fact Sheets
• American Cancer Society has a chat line and a 24-hour help line (1-800-227-2345 or 1-800-ACS-2345)
• Cancer.Net (American Society of Clinical Oncology), oncologist-approved site providing patient-centered information about various types of cancer.
• OncoLink
• PubMed, a database maintained by the U.S. National Library of Medicine and the National Institutes of Health, contains more than 22 million citations from the biomedical literature. This is where to look for studies that are changing medical practice. Type in keyword to pull up citations and possibly abstracts and links to articles. A major research tool.
• Cancer Guide on How to access Medline and other medical databases (CancerGuide.org)
• How to Research the Medical Literature About Cancer (how to use databases and online resources). See also Use Search Operators To Find Stories, Sources and Documents Online (Meranda Watling, 10,000 Words--where journalism and technology meet, 4-19-11)
• A to Z List of Cancer Drugs (more than 200 cancer drug information summaries from National Cancer Institute)
• NCI Drug Dictionary
• Chemocare. Scott Hamilton's chemotherapy site offers general treatment information (drug info, side effects, wellness resources) for cancer patients.
• ClinicalTrials.gov (National Institutes of Health), a registry and results database of publicly and privately supported clinical studies of [cancer and other diseases in] human participants conducted around the world. Enter search term in the database to see related trials, criteria you need to meet to be included in a study, how and where the study is being conducted, and how to get in touch with the researchers.
• Tips for analyzing studies, medical evidence and health care claims (HealthNewsReview). Tips for understanding studies, aimed at medical journalists, but helpful for all of us.
• NCI-supported cancer-specific clinical trials. This database is limited to cancer, so it might be easier to use than ClinicalTrials.gov . Search by city, state, and type of cancer.
• National Comprehensive Cancer Network (NCCN) , a nonprofit alliance of cancer centers that develops evidence-based guidelines for medical practice. See especially NCCN Guidelines for Patients (and Caregivers)
• American Institute for Cancer Research (AICR) focuses on ways to prevent cancer, through the right weight, diet, and amount and kind of physical activity and exercise. The recipes in AICR's cookbook, The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life, are delicious (which can't be said of most healthy-eating cookbooks). I often give this book to families dealing with cancer who wonder what they can do to help.
• National Center for Complementary and Integrative Health, or NCCIH (formerly "and Alternative Medicine"--alternative to medication, surgery, and other traditional medical approaches). For example, "A review of evidence from clinical trials shows that a variety of complementary health approaches—including acupuncture, yoga, tai chi, massage therapy, and relaxation techniques—hold promise for helping to manage pain."
• Understanding Cancer Pain (includes Caregiver's Guide, Cancer Pain Treatments)
• PDQ Cancer Information Summaries, Editorial Boards, and Levels of Evidence (National Cancer Institute)
• Other ways to get PDQ information (NCI)
• Cochrane Reviews: Breast Cancer (evidence based information)
• Cochrane reviews of breast cancer options (reviews of the evidence, to facilitate informed decisions)
• Cure (Cancer updates, research, and education--free for those on the cancer journey)
• Searching for cancer centers (American College of Surgeons)
• Women's Cancer Network. Comprehensive information about reproductive cancers, gynecologic oncologists, survivors’ courses, clinical trials and Foundation for Women's Cancer publications. (Reproductive cancers include breast, cervical, endometrial, germ and stromal cell, GTD, ovarian, primary peritoneal, uterine, vaginal, and vulvar cancer).
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• State Cancer Profiles
• Grand Rounds at Dartmouth-Hitchcock Medical Center (talks and slide shows available free online)
Definitions of cancer terms
• NCI Dictionary of Cancer Terms (National Cancer Institute)
• Cancer Terms, a page on the patient-centered website Cancer.net (American Society of Clinical Oncology)
• Types of Cancer (Cancer.net's glossary)
• NCI Drug Dictionary (technical definitions and synonyms for drugs/agents used to treat patients with cancer or conditions related to cancer)
• What’s the Difference Between Cysts and Tumors? (Healthline) A helpful chart, showing differences, plus explanations.
• Brain and spinal cord cysts (Canadian Cancer Society) Types of cysts, explained: arachnoid, colloid, dermoid, epidermoid, pineal, tumor-associated cysts.
• The 'alphabet soup' of your care team (Cancer Resource Center's explanations of those letters after a medical professional's name)
• Acronyms (From an online NCBI book)
• Abbreviations and Acronyms for Oncology (Cancer Index)
• Abbreviations and Acronyms (from a book on cancer in middle and lower income countries)
Thanks to the Association of Health Care Journalists for its links to Cancer, under its Core Topics, the source for these links on where to find definitions.
What to say or not say to people with cancer
• How not to say the wrong thing (Susan Silk and Barry Goldman, Los Angeles Times, 4-7-13). It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. Comfort those at the center (the patient, patient's family), kvetch to those further away from the center.
• How to Talk to a Friend With Cancer (Claudia Wallis, Time, 10-5-07). Wallis gets advice from Lori Hope, author of a book to help friends and families of those fighting cancer: Help Me Live: 20 Things People with Cancer Want You to Know. Advice on what cancer patients do and don't want to hear and what is useful or makes them feel better.
• Treating Cancer: Hope V Hype (KFF Health Facebook group)
• Cast a wider net to find the support you need (Carolyn Hax, Washinton Post, 7-5-2020) That's Carolyn's advice. The problem was this (related to a non-cancer problem): "I just can't talk to anyone about all the fear and uncertainty I'm feeling. I can't stand people's pity and I'm baffled by the judgments people can extrapolate from any crack in my bravest, this-is-fine face. If I am anything but positive and confident, I'm flooded with pity, unhelpful advice and platitudes....If I want people to treat me normally, it feels like my only option is to cheerfully tell people we're absolutely a-okay!" (Read the whole thing.)
• Talking With Someone Who Has Cancer (Cancer.net Editorial Board, 5-19) Take your cues from the person with cancer. Choose your words carefully (note which phrases to avoid, and why). "Phrase your questions carefully and consider the number of questions that you ask in a conversation. People with cancer are often asked many questions by their friends and family members, and it can become tiresome." Etc.
• Talking With Your Spouse or Partner About Cancer (Cancer.net Editorial Board, 4-18). "Discussing a cancer diagnosis may involve topics that couples do not want to discuss. This could include sexual problems, fertility concerns, physical limitations, financial worries, and even death." Practical insights, tips.
• What You Can Say to Someone With Cancer During and After Treatment (Eva Grayzel, Cancer.net, 7-16-19) Among other tips: "Instead of asking a question you know the answer to when you visit someone with cancer in the hospital, bring what you think he or she will enjoy....find alternatives to the overused comments made to people with cancer and bring joy to them in this difficult time."
Stem cell therapy
(including some unproved and dangerous therapies)
• Saving Deddi's Life: What Donating Stem Cells To My Father Taught Me (Paris Alston, WBUR CommonHealth, 4-5-19) "I was the match. My father had been diagnosed a few months ago with a potentially fatal leukemia, and it turned out my biology made me the best potential donor of the cells that could give him a better chance at survival." A daughter gets a rare chance to help give her father life - and learns that African-American stem-cell donors are especially needed. (An informative article.)
• U.S. prosecutors sue to shut down clinics "selling unproven stem cell treatments in California and Florida (Michael Hiltzik, Los Angeles Times, 5-9-18) The U.S. Department of Justice filed lawsuits aimed at shutting down clinics in Florida and California that have marketed unapproved and unproven "stem cell" treatments to thousands of patients, some of whom suffered severe adverse reactions. The lawsuits are the most aggressive steps yet taken by government regulators against rapidly proliferating stem-cell treatment clinics pitching scientifically unproven therapies to desperate patients, some with terminal illnesses. The lawsuits were filed at the request of the Food and Drug Administration, which last year announced that it would take a stern approach to what it described as the manufacture and use of unlicensed drugs. The targets of the California lawsuit are California Stem Cell Treatment Center and its proprietors, physicians Mark Berman, a cosmetic surgeon, and Elliott Lander, a surgeon and urologist."
• The FDA Takes on Quack Stem Cell Clinics (Pete Shanks, Center for Genetics and Society, 5-29-18) "The FDA is beginning to move against dubious stem-cell clinics, and not a moment too soon.....The blinding of four women definitely raised the profile of this issue, and led to the FDA actions. Let us hope that the next positive move for regulation is not inspired by the death of a patient." Excellent overview, linking to other important stories. Take notes about the names of the quack companies as well as names associated with legitimately promising stem cell research.
• How Unproven Stem Cell Therapies Are Costing Desperate Patients (Laura Beil, Texas Monthly, Jan. 2020) Many researchers believe in the potential of stem cells to treat a host of diseases. But for some patients, lack of oversight of the multibillion-dollar industry has had disastrous consequences. So far stem cell treatments have been demonstrated effective and approved to help tackle only certain blood disorders, including some cancers. All other uses remain unproven. Yet their experimental status has not impeded a boom in sales.
• Dangerous Stem Cell Clinics Show What Can Happen Without Regulation, FDA Official Says While Addressing ‘Right To Try’ Law (KHN, 11-15-18)
When asked about the agency's implementation of the "Right to Try" law -- which allows desperate patients access to drugs that haven't been approved by the FDA -- Dr. Peter Marks, director of the Center for Biologics Evaluation and Research, pointed to stem cell clinics as an example of the sometimes fatal consequences of an unregulated industry. He pointed to some clinics that purported to treat patients for a variety of conditions and instead ended up blinding them or causing tumors.
• 21st Century Snake Oil. (Scott Pelley, 60 Minutes, 4-16-10) "60 Minutes" hidden cameras expose medical con men who prey on dying victims by using pitches that capitalize on the promise of stem cells to cure almost any disease. Scott Pelley reporting--both video and transcript.
• Surviving the Cure: Cancer was Easy, Living is Hard by Andrew Bundy. After barely surviving treatments for leukemia, a teenager discovers the after-effects of the cure make returning to a normal life all but impossible. "Not long after I returned home, my lungs started failing. The cure was killing me." "For many children diagnosed with cancer, not only can the therapy carry significant and life-threatening side effects during treatment, the effects can extend years beyond completion of cancer therapy into survivorship. For some patients with leukemia who must undergo a stem cell transplant, the long-term effects can be especially severe. Among many messages contained in Andrew's story, one is the clear need to develop more effective and less toxic treatment; patients deserve no less."--Dr. Peter C. Adamson, Children's Hospital of Philadelphia.
• Stem cell tourism: from bad to worse from 2010-2011 (Paul Knoepfler, The Niche, Knoepfler Lab Stem Cell Blog, 7-29-10) At last year’s ISSCR 2010 Meeting in San Francisco, President Irv Weissman talked about the dangers of unvalidated stem cell treatments. He talked about the responsibility of stem cell scientists to stand against these and the importance for scientists not to endorse or serve on advisory committees of companies peddling such products and “therapies”. As I sat in the audience, I thought it was important when Weissman very bluntly said they are: Beware of “someone trying to treat your wallet and not you”..... I think it is actually not the job of the ISSCR to police stem cell clinics. Rather it is the FDA’s responsibility....If you simply Google “Stem Cells”, the side bar lights up with Ads. Some are totally legit. Some are downright frightening. One problem is that the ads for legit and frightening places are all mixed together, giving them all an air of legitimacy.
• How Jack Nicklaus and Dr. Sanjay Gupta hyped an unproven stem cell treatment — and why this could harm you (Michael Hiltzik, LA Times, 5-14-18)
Cancer blogs and stories of personal encounters with cancer
• Cancer Taught Me Some Unexpected Lessons (Eugenia Mancini Horan, Cure Today, 9-29-22) Lots of interesting and informative stories by cancer survivors.
• One Thing I Don’t Plan to Do Before I Die Is Make a Bucket List (Kate Bowler, NY Times, 8-28-21) "I wish someone had told me that the end of a life is a mathematical equation....Suddenly years dwindle into months, months into days, and I begin to count them." See also
---What to Say When You Meet the Angel of Death at a Party (Kate Bowler, NY Times, 1-26-18) After years of living with stage IV cancer, I have some suggestions.
---How Cancer Changes Hope (Kate Bowler, NY Times, 12-28-18) Facing death, I felt the connection between the past and the present more deeply than I ever thought I would.
---Death, the Prosperity Gospel and Me (Kate Bowler, NY Times, 2-13-16) "On a Thursday morning a few months ago, I got a call from my doctor’s assistant telling me that I have Stage 4 cancer. The stomach cramps I was suffering from were not caused by a faulty gallbladder, but by a massive tumor. I am 35."
• We Needed More Significant Others (Logan Ury, Modern Love, NY Times, 1-8-2021) A cancer diagnosis in the midst of the pandemic led to our improvising a wedding and joining a commune, where our family of two became 14.
• These Precious Days (Ann Patchett, Harper's, Jan. 2021) Ann Patchett's long, absorbing story/essay about the friendship that develops during the COVID-19 pandemic when Patchett offers to host Sooki Raphael, the actor Tom Hanks' assistant, in her home in Nashville, while Sooki is treated for advanced pancreatic cancer.
• My life was upended for 35 years by a cancer diagnosis. A doctor just told me I was misdiagnosed. (Jeff Henigson, Washington Post, 3-27-24) "Ever since I was diagnosed with brain cancer at age 15, the probability of my survival has been stacked against me. Each birthday was preceded by a moment of dread...Brain radiation damaged my vision, my hearing and my hormones, and its long-term effect on the scar tissue in my brain is possibly why I’m epileptic. Chemotherapy harmed my lung function." Yet he survived, and that unlikely fact led one expert to suspect his diagnosis was wrong.
---The dying teenager who wanted world peace (and love) (Natasha Lipman, BBC, 7-25-20)
---A rare brain cancer 'wreaked havoc' on this man's life 35 years ago. But was he misdiagnosed? (Advisory Board, 4-1-21)
Cancer blogs: (tell me of any I'm missing)
• A Day in the Life: My Child Has Cancer (Alexa Wilding, A Cup of Jo, 1-2020)
• As the Tumor Turns (a lymphoma patient's blog, not for the faint of heart)
• Bad Thanksgiving (Joyce Wadler, NY Times, 11-27-13) Love does not come as expected in a cancer hospital.
• Blog for a Cure (meet-up blog for those looking for support from someone who's been there)
• Breast Cancer Action
• Breast Cancer? But Doctor....I hate pink (Ann Silverman's blog on living with metastatic cancer. Early detection is not the same as cure, she learned.)
• Cancer Becomes Me by Marjorie Gross, who wrote for "Seinfeld." This humorous essay about her ovarian cancer appeared in the New Yorker, 4-15-96. She died in June that year. Here's her Times obit.
• Cancer Bitch (a feminist blogs about her breast cancer)
• The Cancer Match (poem by James Dickey)
• Cancer's Not Pink (Stephanie Theobald, The Guardian, 3-15-12). Women are rebelling against the fluffy imagery surrounding breast cancer
• Cancer in Context (Reuters blog)
• The Cancer Wake Up Call: 8 Lessons that Enhanced My Life (Steven Gaffney, Cancer.Net. 4-9-10)
• Cancerwise (M.D. Anderson Center)
• Chemo Chicks (empowering women with cancer, with humor)
• Collateral Damage (Brenda Scearcy, Pulse, 5-16-14) On the time-consuming and uncomfortable side effects from unnecessary surgery the doctor doesn't tell you about, and here's an explanation of omentum (belly fat).
• Covering Health (blog roll of Association of Health Care Journalists, AHCJ)
• Cowgirl Attitude (a Nashville girl gets colon cancer and lives to blog about it--if you don't like reading about poop, this is not the blog for you)
• Cover-Up Carol Scott-Conner, Pulse, 4-18-14). Prosthesis, reconstruction, or go with one breast? A doctor/patient talks about the discomfort of dressing in the swimming pool dressing room.
• Cure (share your stories)
• Dana-Farber Cancer Institute: Insight
• Dave Getting Stronger (to keep others up to date on David Holder's "delymphomanization" and, finally, his death)
• David's Cancer Videoblog (from diagnosis to death, celebrating the life of David B. Oliver)
• The day two men talking about cancer on the radio made the nation stop (Miranda Sawyer, The Guardian, 2-12-17) Steve Hewlett tells of the impact of his cancer diaries on Radio 4. See My Cancer Diary (Steve Hewlett)
• Dr. Len's Blog (expert perspective, insight, discussion)
• Five Years to a Cure (Ellen Diamond, Pulse, 8-24-12). Ignoring doctors' overoptimistic promises of finding a cure, this CLL patient is learning to live with her slow-growing form of leukemia, to make careful choices among treatments, and to make the most of her new reality. A positive but realistic view of life as a cancer patient.
• Get real about breast cancer (a single mother's blog)
• Glioblastoma and me (Jeffrey Weiss, Dallas News)
• Grape jelly, the tooth fairy, powdered milk, nuclear fallout, radiated feet & me (Sue Hessel, Pinky Pie)
• Healing Physically, Yet Still Not Whole (Dana Jennings on the difference between recuperating and full recovery, NYTimes 1-18-10)
• HealthNewsReview (checking out the facts on cancer: Is it time to digitally re-examine the PSA test? When patients speak – some hear golden tones and others noise; “More accurate than traditional biopsies” and other misinformation about a new prostate cancer test from NY-Presbyterian Hospital; Roundup of Media Messages on the New Mammogram Guidelines; and so on.
• How Cancer Changed Me In Unimaginable Ways (Rachel Zimmerman, WBUR's CommonHealth Reform and Reality, 2-23-12). The changes in her life since being diagnosed with colorectal cancer are not all physical.
• How cancer transformed this physician (Collin OHara, MD, KevinMD.com, 3-2-18)
• In Cancer Therapy, There Is a Time to Treat and a Time to Let Go (Jane E. Brody, NY Times, 8-18-08)
• Leaving a Record of Lessons Learned (Leroy Sievers, NPR cancer blog)
• Life, Interrupted: A video portrait of cancer in young adulthood, NY Times video of Suleika Jaquad, who blogs about her treatment for cancer at the age of 22 for the Times' Well column, under Life, Interrupted:. See also Good Afternoon, You Have Cancer (HuffPost 1-10-10) and She blogs about her experiences at Secrets of Cancerhood. There is an excellent NPR interview by Neal Conan (in which she reports being initially misdiagnosed, in France, with "burn-out syndrome," and discusses fertility treatments to compensate for cancer's effects on fertility), and other material.
• Life, Interrupted: Medical Bills, Insurance and Uncertainty (Suleika Jaquad, Well, NY Times, 8-9-12). in this blog entry, the author begins her education about the financial realities of cancer treatment. See all the other blog entries here, including (at 24) Six Ways to Cope with Cancer.
• Life with Cancer (Erin Zammett Ruddy's blog, Glamour magazine)
• Living a chronic life in a fix-it-now world (Kate Bowler, Opinion, Wash Post, 6-17-19) By the author of Everything Happens for a Reason: And Other Lies I’ve Loved "Cancer used to be a daily crisis of soaring highs and lows, but in the intervening years (I’m now 38) it has become something different, something chronic....It’s hard for me to know when to stop being afraid."
• Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan (how Diane Manahan chose to live life fully at the end and die at home)
• Living Strong, a dialogue with Lance Armstrong (Newsweek, April 2007)
• Living With Cancer: In and Out of the Closet (Susan Gubar, Well, NY Times, 4-16-15)
• Milt's Muse (his blog on incurable cancer, his resulting depression, and his feeble attempts at self help)
• Miracles Happen (this link goes to a page of personal essays worth reading, including How Cancer Gave Me My Voice Back about author and playwright Peter Tinniswood, who lost the power of speech to oral cancer, but, as he tells Toby O'Connor Morse, found a whole new lease of creative life.
• The Long Goodbye: The Moment I Heard My Mother's Diagnosis (Meghan O'Rourke, DoubleX.com, on the meta-narrative of illness, part IX in a series on grief and grieving)
• My 40-day breast cancer (Emma Gilbey Keller, The Guardian, 4-27-12). A handful of atypical cells one week; a double mastectomy and reconstructive surgery the next. It's a cure, but it's brutal
• My Left Breast (here, "Not So Fast," 2012 findings about 4 types of breast cancer)
• My Life with Cancer (Jonathan Alter, Newsweek, on his mantle cell lymphoma)
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer "I am now face to face with dying. But I am not finished with living."
• 'My sister died of lung cancer but never smoked' (Clive Coleman, the BBC’s legal correspondent, BBC News, 2-13-18)
• No More Shame (actress Oni Faida Lampley, Self, 2-26-07) I have no risk factors, no family history of breast cancer. And not one of the women in my pamphlets is black. But a sense of shame no longer rules me. When you're used to being in control, it's hard not to feel that you're somehow to blame for having cancer. My illness may be chronic, but at last I can say my shame is in remission.
• Notes to Soothe the Savage Cells -- Music to Have Cancer By (Dana Jennings, New York Times 1-10-09).
• Pinky Pie (Sue Hessel's blog)
• Roger Ebert: The Essential Man (Chris Jones, Esquire, 2-16-10). Roger Ebert lost his lower jaw and his ability to speak to cancer of the thyroid and salivary glands. The doctors told him they were going to give him back his ability to eat, drink, and talk, but they were wrong.
• Smells Like Love (Catherine Moseley Clark, Pulse, 5-6-22)
• Squirrels (Jamie Courville), short audio stories from people living with cancer
• StandUp2Cancer (the latest information on cancer research, combined with personal profiles of cancer patients and survivors)
• Stunning News of a Tumor Serendipitously Discovered (Carol Krucoff, Cases, NY Times, 9-6-05). "An M.R.I. taken six months earlier - when I'd been hospitalized for severe hyponatremia after drinking too much water during a marathon - had revealed a small acoustic neuroma, a benign tumor of the auditory nerve. But I was in a coma for four days and my memory of that period is impaired. The tumor was considered an "incidental finding" because it was accidentally discovered while treating another ailment, and although they told me about it at the hospital, it hadn't registered." What happens as the result of such incidental findings?
• StupidCancer focuses on young adult cancer (ages 15–39)
• Suddenly, My Body (powerful TED talk by Eve Ensler, Oct. 2010)
• Suspicious Country (Nina Riggs's blog--this entry: "Camp Radiation.") This blog evolved into the memoir The Bright Hour: A Memoir of Living and Dying and grew out of her Modern Love essay in the NY Times: When a Couch Is More Than a Couch (9-23-16).
• Taking On Cancer Again, This Time With the Wisdom of Age (Steven Petrow, NY Times, 12-12-12). Treatment for testicular cancer in his mid-20s, Petros was aggressive in fighting it--putting a crimp in his personal life. When it comes back decades later, he realized "that cancer victories are not won by personality types, but by a combination of doggedness (choosing the best physician, getting the right diagnosis and treatment), responsibility (doing your own research and taking care of your overall health), and plain old luck. In this NPR story, 'Wait To Worry' About Challenges (Tell Me More, 6-3-14) he shares another lesson. " When his cancer went into remission, columnist Steven Petrow was overwhelmed by the fear that it would return. But it taught him a philosophy that helped him cope: wait to worry."
• Target Cancer series (Amy Harmon, NY Times 2-2010),chronicling the first human trial of an experimental cancer drug, explores the challenges that face the doctors and patients who test it. Three stories in the series (plus video): (1) A Roller Coaster Chase for a Cure (2-21-10). At what may be a watershed moment in understanding genetic changes that cause cancer, a small band of doctors is doggedly testing a drug known as PLX4032. (2) After Long Fight, Drug Gives Sudden Reprieve --The trial of a melanoma drug offers a glimpse at a new kind of therapy tailored to the genetic profile of a cancer. (3)A Drug Trial Cycle: Recovery, Relapse, Reinvention--The mysteries of new drugs and the limits of the medical trial process are forcing doctors testing targeted drugs to make difficult choices about patients’ lives.
• Telling Your Story (Liz Sarmi, on why she started writing about her brain cancer, and what effects doing so had (guestblogging on CURE (Combining science with humanity, CURE makes cancer understandable). Liz's own blog is The Liz Army (about a cool chick who has brain cancer)
• To Hell & (Hopefully) Back (April Hamilton's blog about what happens when you learn you have a rare breast tumor, and two days later your husband announces he's leaving you)
• The 24 Best Breast Cancer Blogs of 2013 (Robin Madell and Tracy Rosecrans, Healthline, 7-23-13)
Chemotherapy
• A to Z List of Cancer Drugs (more than 200 cancer drug information summaries from National Cancer Institute)
• Side Effects (National Cancer Institute, or NCI)
• RX Dangers (practical drug, device, and healthcare safety information--this online database provides up-to-date drug recall news and unbiased information about serious side effects, complications, and interactions of commonly prescribed drugs)
• Chemotherapy Drugs and Drugs Often Used During Chemotherapy (Chemocare)
• Chemotherapy Acronyms (Chemocare)
• MyOncoFertility.org (patient education resource on preserving fertility, from the OncoConsortium)
• WHO Model Lists of Essential Medicines
• Drug dictionary (National Cancer Institute)
• Drug information (Medline Plus)
• Chemotherapy Treatment and Survival Statistics and Side Effects (Karen Selby, RN, Asbestos.com). Interesting numbers for various types of cancer, with an appendix about mesothelioma.
• Medication management for cancer patients (Singlecare) Helpful tips on storage, use, and disposal of cancer medications. Following the 5 Rights of Medication Administration (right drug, dose, time, route, and person) is crucial for the safety and health of cancer patients. Adapt its medication tracker to keep track of your own use of medication.
The guide offers practical advice on:
How to accurately read medication labels
Ways side effects of cancer treatments may impact managing medications
Medication safety tips and dosage information
Tips on medication organization and storage
Downloadable medication management charts
• The Treatment: Why is it so difficult to develop drugs for cancer? (Malcolm Gladwell, New Yorker, 5-17-10) A broad and wonderful explanation of what it took for experiments with chemotherapy to start working--and why it is still so hard to find the right drugs (and combinations of drugs) for the many forms of cancer.
• What Are The Different Types of Chemotherapy for Breast Cancer? (Sonja Jacobsen, GoodRX, 8-30-21) Very informative, and not just about chemo.
• Amgen Plows Ahead With Costly, Highly Toxic Cancer Dosing Despite FDA Challenge (Arthur Allen, KFF Health News and Washington Post, 5-7-24) The FDA told Amgen to test whether a quarter-dose of its lung cancer drug sotorasib worked as well as the amount recommended on the product label. It did and with fewer side effects. But Amgen is sticking to the higher dose — which earns it an additional $180,000 a year per patient.
• Chemotherapy, a Trusty Weapon Against Cancer, Falls Out of Favor (Lucette Lagnado, WSJ, 1-29-18) Breast-cancer doctors are at odds over whether some patients should get less chemo—or none at all. Eminent breast-cancer doctors disagree on whether to prescribe less chemotherapy; some worry about the treatment's 'toxicities' and others say it saves .
Or listen to Lagnado: Is chemo always necessary for cancer treatment. (Rob Breakenridge interviews her on Global News Radio, 1-30-18) Chemotherapy is a really crude way of treating cancer and comes with its own problems. We are speaking about early breast cancer and an early movement called "de-escalation," against a larger issue: whether we haven't overtreated lots of Americans for breast cancer and other cancers, too. We don't quite have our arms around how to treat the disease. Prostate cancer status is even worse than for breast cancer. For years men with even low levels of cancer were subjected to radical surgery with terrible side effects, and guess what? Now it's surveillance, biopsies, and then treatment, if it gets worse.
Breast cancer is a horrible disease if it comes back, but survival rates have gotten better. The problem is: what do you do to keep it from coming back? So the whole debate is about preventing recurrence. For early-stage breast cancer, maybe it's enough to do surgery, radiation, and hormone therapy--and yet, we don't have enough data. Even the strongest proponents of "dialing down" treatment would say that the art and science is determining which patients would or wouldn't benefit from chemotherapy, and for which patients are the side effects worse than the possible benefits. Some other doctors say, Let's make sure there is data and science behind what should be done. Now there is more knowledge about the biology and genomics of the cancer, with gene testing, which with some cancers can help predict whether the cancer will come back. But much of the information is still vague, so listen carefully to what your doctors say and then get a second opinion.
• Tough Medicine (Malcolm Gladwell, New Yorker, 12-14-15) A disturbing report from the front lines of the war on cancer. Vincent DeVita, as befits someone who spent a career at the helm of various medical bureaucracies, has written an institutional history of the war on cancer. His interest is in how the various factions and constituencies involved in that effort work together—and his conclusions are deeply unsettling. There is a tradeoff between innovation (in which the fewer rules there are, the more chance for discovery) and diffusion (in which, once you find a chemotherapy that works in particular situations, you want consistency in how it is applied, so you know exactly what is working or not--in other words, you need rules.
"DeVita reminds us, though, that this gatekeeping can hinder progress. A given tumor, for instance, can rarely be stopped with a single drug. Cancer is like a door with three locks, each of which requires a different key. Suppose you came up with a drug that painlessly opened the first of those three locks. That drug would be a breakthrough. But it can’t cure anything on its own. So how do you get it through a trial that requires proof of efficacy—especially if you don’t yet know what the right keys for the two remaining locks are? Since cancer comes in a dizzying variety of types and subtypes, each with its own molecular profile, we want researchers to be free to experiment with different combinations of keys. Instead, DeVita argues, the F.D.A. has spent the past two decades pushing cancer medicine in the opposite direction."
• Are We Being Misled About Precision Medicine? (Liz Szabo, KHN, in NY Times, 9-11-18) Doctors and hospitals love to talk about the cancer patients they’ve saved, and reporters love to write about them. But deaths still vastly outnumber the rare successes. "At the most recent meeting of the American Society of Clinical Oncology, researchers presented four precision-medicine studies. Two were total failures. The others weren’t much better, failing to shrink tumors 92 percent and 95 percent of the time. The studies received almost no news coverage." Precision medicine is often called "personalized medicine."
"Hospitals promote their precision-medicine programs by showcasing the stories of long-term survivors. Companies that sell the tests that look for mutations — such as Foundation Medicine, Caris Life Sciences and Guardant Health — highlight only the best-case scenarios."
• Readers And Tweeters Slice And Dice Precision Medicine, Step Therapy (Reactions to Liz Szabo's piece, KHN) "In calculating the pluses and minuses of precision medicine, please add attention to “side effects,” which can be more like full-frontal assaults.... At best, 2 in 25 patients live five years with the diagnosis of metastatic lung cancer, instead of the estimated 1 in 25 about 10 years ago. Yes, it’s progress, but at great physical and emotional cost."
• Drugmaker raises the price of an old chemo medicine tenfold amid persistent shortages (Ed Silverman, STAT News, 10-27-22) Areva Pharmaceuticals has begun marketing vials of fludarabine at a wholesale price of $2,736, a much steeper cost than the $272 charged for the same dosage by Fresenius Kabi and the $109 price tag from Teva Pharmaceuticals. Fludarabine is mainly used to treat chronic lymphocytic leukaemia (CLL). It may also be used in trials for low grade non-Hodgkin lymphoma (NHL), hairy cell leukaemia, acute myeloid leukaemia and a type of lymphoma that affects the skin called mycosis fungoides.
• Women see more adverse events with chemotherapy and newer cancer treatments, study finds (Marcus A. Banks, STAT, 3-7-22) In the case of chemotherapy, the dogma of “maximum tolerated dose” is entrenched, said Narjust Duma, who treats lung cancer patients at the Dana-Farber Cancer Institute and advocates for more inclusive cancer research. For now immunotherapies are also given at the same dose to everyone regardless of their sex and weight. Additionally, Duma said, upward of 70% of participants in Phase 1 trials are men. As a result, any indicators that, say, an immunotherapy is “very well-tolerated” generally apply only to men, Duma said. Phase 1 trials guide dosing decisions for later-stage trials.
• Mind jumble: Understanding chemo brain (Ruthann Richter, 4-7-2020, Stanford Medicine) “Cancer is not done when the cancer is gone,” Monje said. “We need to follow up on the pretty serious consequences of these life-saving therapies and hopefully promote regeneration and healing of the damage done by these very powerful treatments."
• Chemo Brain: The Fog That Follows Chemotherapy (Jane E. Brody, Health, NY Times, 8-3-09). And part 2, also by Brody: Taking Steps to Cope With Chemo Brain (8-11-15) The symptoms of chemo brain — commonly mental fogginess that can cause problems with memory, concentration, word retrieval, number processing, following instructions and multitasking — are widely known. And the effects, the causes of which are still unclear, are sometimes long-lasting. Brody writes briefly about steps for coping, and about Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman and Idelle Davidson. which offers "a long list of suggestions to help people who are struggling with the cognitive effects of chemotherapy."
• A Survivor’s Guide to Chemotherapy and Sleep (Paul Watson, Sleepopolis, 6-22-22) Pain, anxiety, and the side effects of medication (including tinnitus, or ringing in the ears) can make sleep difficult. Sleeping is important for healing, and Watson suggests ways to improve your ability to sleep well.
• Drug shortages jeopardize the lives of children with cancer (Yoram Unguru, STAT, 3-19-19) A recent clinical trial showed that adding the drug nelarabine to standard chemotherapy led to a significant improvement in survival for children with Alice’s form of leukemia. Recognizing that some medications are more important than others, many countries throughout the world have adopted the World Health Organization’s essential medicines list (known as EMLc). Over the past 30 months, nearly two-thirds of these essential medicines have been or are currently in short supply in the U.S. (today, four of the 18 are in short supply). During the same period, another nine chemotherapy agents not included on the EMLc have been or are currently in short supply in the U.S., which should create an essential medicines list for pediatric oncology drugs.
• A Clever New Strategy for Treating Cancer, Thanks to Darwin (Roxanne Khamsi, Wired, 3-25-109) "Like the diamondback moth, cancer cells develop resistance to the powerful chemicals deployed to destroy them. Even if cancer therapies kill most of the cells they target, a small subset can survive, largely thanks to genetic changes that render them resistant. In advanced-stage cancer, it’s generally a matter of when, not if, the pugnacious surviving cells will become an unstoppable force. Gatenby thought this deadly outcome might be prevented. His idea was to expose a tumor to medication intermittently, rather than in a constant assault, thereby reducing the pressure on its cells to evolve resistance....Gatenby’s method would permit cancer to remain in the body as long as it doesn’t spread further. To test this idea, Gatenby got permission in 2014 to run a trial on advanced-stage prostate cancer patients at Moffitt....The hope was that, by using a precise drug-dosing scheme developed using evolutionary principles, they could slow the rise of the mutations that would endow some cancer cells with the fitness to survive.
"Gatenby's name for the approach was adaptive therapy....When that failed, he tried a newly approved approach to immunotherapy, abandoning the failed "war on cancer" (you know chemo worked if you weren't dead) and takes an adaptive approach: "to outsmart it rather than carpet-bomb it," turning cancer into a chronic disease, one you don't necessarily die from.
• Scientists have discovered a new trigger for killing cancer cells (David Nield, Science Alert, 5-30-16) "Scientists have found a new way of triggering the death of cancer cells, using the body's own cell-clearing function. By harnessing the activity of a protein called Bak - known for its function as the biological assassin that kills off old, dysfunctional cells - the Australian team has figured out how to turn the killer protein on cancer cells instead....Using information about Bak's three-dimensional structure, the team discovered that a certain antibody could bind itself to the Bak protein and activate it, leading them to investigate if they could control where the protein would strike."
• Cochran reviews of breast cancer options (reviews of the evidence, to facilitate informed decisions)
• Tamoxifen (Susan G. Komen org)
• The High Cost of Cancer Drugs and What We Can Do About It
• The Health Effects of Cannabis and Cannabinoids: The Current State of Evidence and Recommendations for Research (National Academies Press). Read online free, or download PDF.
• The Effects of Chemotherapy on Your Body (Ann Pietrangelo and Kristeen Cherney, HealthLine, 5-31-17)
• Special issue: Frontiers in cancer therapy (Science Magazine, March 17, 2017) Among other articles in that issue:
---Stocking oncology's medicine cabinet (Paula A. Kiberstis, John Travis) A decade of cancer genome projects has provided a sobering message about the complexity of this disease. Genetic alterations contributing to tumor growth can vary among patients, between primary tumors and metastases, and even within different regions of a single tumor. This heterogeneity can explain why a specific drug benefits one patient but not another and why a patient initially helped by a medication might later present with recurrent, drug-resistant disease.
---When less is more (Jocelyn Kaiser) For decades, cancer treatments have been given to patients continually at the maximum dose that can be tolerated. But a few labs are challenging that dogma. They are motivated by theoretical models of cancer growth and evidence from animal studies suggesting that briefly stopping or cutting back a drug dose can help keep the cancer cells from becoming resistant to the drug and can even trigger some cells to die, extending patients' lives. Periodically ceasing cancer therapy can also be less toxic for the patient. Trials are testing these new dosing strategies. Some stop the drug altogether, then restart it on a fixed schedule; others alternate high and low doses; and still others wait until the tumor has shrunk significantly before dialing down treatment.
---PARP inhibitors: Synthetic lethality in the clinic (Christopher J. Lord1, Alan Ashworth). PARP inhibitors (PARPi), a cancer therapy targeting poly(ADP-ribose) polymerase, are the first clinically approved drugs designed to exploit synthetic lethality, a genetic concept proposed nearly a century ago.
---A new cancer ecosystem (Sandra J. Horning) Cancer is increasingly being viewed as an ecosystem, a community in which tumor cells cooperate with other tumor cells and host cells in their microenvironment. As conditions change, the ecosystem evolves and adapts to ensure the survival and growth of cancer. Our understanding of the intricate relationships in this ecosystem has led to revolutionary treatments, including immunotherapy. Successful treatment and prevention of cancer require an ecosystem, too—a coordinated unit of researchers, patients, health care professionals, health care systems, regulatory agencies, government, and industry. How can these partners work together as one interconnected community?
• An end to oncology drug madness? (Richard Lehman, BMJ Blog, 5-31-16). A brief summary for laymen of an article in the New England Journal of Medicine: Seamless Oncology-Drug Development by Tatiana M. Prowell, Marc R. Theoret, and Richard Pazdur (NEJM 26 May 2016 Vol 37). Lehman recommends following @VinayPrasad82 and @oncology_bg on Twitter for " sane running commentary" on “early access to transformative new anticancer drugs" -- driven by a desire to make the very rare “drugs with unprecedented levels of efficacy” available "at production costs to the health care provider."
• Last month in Oncology by Bishal Gyawali: May 2016 (on ecancernews (the latest oncology headlines). For those who REALLY want to dig deeply into oncology, chemotherapy, and cancer issues, here's one place to start.
• The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable--and How We Can Get There by Vincent DeVita and Elizabeth DeVita-Raeburn
• Livertox: Clinical and Research Information on Drug-Induced Liver Injury (NIDDK). Drug induced liver injury can be severe and even fatal, but is usually reversed by discontinuation of the offending agent. Search for a specific medication, herbal, or supplement. See list of agents included in Livertox database, by drug class
• Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Daniel Silverman and Idelle Davidson
• The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment by Judith McKay
• Chemo: Secrets to Thriving: From someone who's been there by Roxanne Brown
• DigniCap Cooling System A computerized cooling unit managed through a touch screen display and an attached cooling cap designed to reduce hair loss from certain chemotherapy treatments (FDA cleared for patients with solid tumors).
• Targeted Cancer Therapies Fact Sheet (National Cancer Institute)
• Waste in Cancer Drugs Costs $3 Billion a Year, a Study Says (Gardiner Harris, NY Times, 3-1-16) "If drug makers distributed vials containing smaller quantities, nurses could pick the right volume for a patient and minimize waste. Instead, many drug makers exclusively sell one-size-fits-all vials, ensuring that many smaller patients pay thousands of dollars for medicine they are never given," according to a study done at Memorial Sloan Kettering Cancer Center. "Some of these medicines are distributed in smaller vial sizes in Europe...“Drug companies are quietly making billions forcing little old ladies to buy enough medicine to treat football players, and regulators have completely missed it"....
• Oncologists Want Medicare Drug Demo Proposal Gone (Health Care Daily Report, 5-10-16) Oncologists and other doctors are urging the Medicare agency to rescind a proposed demonstration that would test six different approaches for paying for Part B drugs that are administered in physician offices and outpatient departments.
• Community Oncology Alliance (COA) , a national nonprofit group dedicated to community cancer care. See New Study Shows Shift in Cancer Care to More Expensive Hospital Setting. Among other things, this study found that Medicare payments for chemotherapy administered in hospital outpatient settings have more than tripled since 2005 while payments to physician community cancer clinics have actually decreased by 14.5 percent. "Chemotherapy has been delivered in the physician office setting safely and cost-effectively for decades. This disturbing trend is turning back the clock on modern cancer care without any clinical justification,“ said Scott Kruger, MD of Virginia Oncology Associates.
• Chemo or Lourdes? Welcome to Cancerland (Michael Carbine, Pulse, 5-5-14)
• Cured From Cancer, Almost (Mikkael A. Sekeres, Well, NY Times blog, 5-11-15) "For people approaching their eighth decade, the decision of whether or not to take chemotherapy for leukemia is anything but straightforward. The treatment can be brutal, confining a person to his or her hospital room for a month, and it can accelerate a death that might have taken months if the leukemia were left to its own devices. People go through with it to try to win the golden ticket — the chance to be cured of leukemia. In someone my patient’s age, that occurs only 5 percent of the time."
• Victims Seek Payments As ‘Dr. Death’ Declares Innocence (Melissa Bailey, Kaiser Health News, 11-18-16) 'Victims of “Dr. Death” had until this week to submit receipts for unnecessary chemotherapy, medical bills for liver damage and funeral expenses for their loved ones....Among those seeking repayment is Teddy Howard, 56, a former financial analyst who said Fata destroyed his life. Fata diagnosed him with a rare blood disorder and gave him 44 chemotherapy treatments. After Fata’s arrest in 2013, Howard was appalled to learn that he never had cancer in the first place. The arrest came too late, Howard said: 18 months of chemotherapy had already wrecked his liver and teeth. Howard had a liver transplant and plans to undergo surgery to replace all of this teeth. He said he filed a restitution claim for about $100,000 in medical bills."
Cancer Syndromes
(with links to the American Cancer Society)
• Ataxia-telangiectasia (A-T)
---Ataxia-telangiectasia (A-T) (American Cancer Society) is a rare hereditary condition that affects the nervous system, immune system, and other body systems. Other names for A-T include Louis-Bar syndrome, cerebello-oculocutaneous telangiectasia, and immunodeficiency with ataxia telangiectasia.
• Birt-Hogg-Dubé syndrome (BHD)
---Birt-Hogg-Dubé syndrome (BHD) (American Cancer Society) is a hereditary condition with symptoms that generally don't appear until adulthood.
• Carney Complex (CNC)
---Carney Complex (CNC) (American Cancer Society) is a rare genetic condition in which people typically have pigmented (dark) areas on their skin, as well as a higher risk of certain types of tumors.
• Cowden Syndrome
---Cowden Syndrome (American Cancer Society), also known as Cowden disease or multiple hamartoma syndrome, is a rare inherited condition with benign (non-cancerous) growths in different parts of the body, as well as an increased risk for some types of cancer. CS belongs to a family of syndromes called the PTEN hamartoma tumor syndromes.
---Familial GIST Syndrome (American Cancer Society) is a rare inherited condition that increases a person's risk of developing gastrointestinal stromal tumors (GISTs).
•Hereditary Breast and Ovarian Cancer Syndrome (HBOC)
---Hereditary Breast and Ovarian Cancer Syndrome (HBOC) (American Cancer Society) is a genetic condition that makes someone more likely to get breast, ovarian, prostate, and some other cancers. HBOC is caused by a change (mutation) in a gene that can be passed down in families.
---Li-Fraumeni Syndrome (LFS) (American Cancer Society) is a rare inherited syndrome that can lead to an increased risk of several types of cancer. It is also called the sarcoma, breast, leukemia, and adrenal gland (SBLA) cancer syndrome. Li-Fraumeni syndrome is hereditary, meaning that it is caused by a change (mutation) in a gene that can be passed down in families.
---Li-Fraumeni Syndrome: A Rare Genetic Disorder The most common types of cancer found in families with Li-Fraumeni syndrome (LFS) include osteosarcoma, acute leukemia, breast cancer, brain cancer, and adrenal cortical tumors
---What is Li-Fraumeni Syndrome? (YouTube video, 9 minutes, Dana-Farber Institute)
---Lynch Syndrome, also called hereditary non-polyposis colorectal cancer (HNPCC), is the most commonly inherited cancer syndrome that increases a person's risk for colon cancer. (American Cancer Society)
• Poet Christian Wiman on Love, Faith, and Cancer . "Bill Moyers has a moving conversation with acclaimed poet and Poetry Magazine editor Christian Wiman about how finding true love and being diagnosed with a rare and incurable blood cancer reignited his religious passion as well as his creative expression. “When we think of our memories, they’re moments of intensity. Whether they were sorrowful or happy, moments of great loneliness or moments of great communion — we live for these moments in our life. And I do think poetry is a way of recognizing the moments in your life. But also a way of preserving them,” Wiman tells Moyers. “One of the ways in which I feel close to God is writing poetry.” You can listen to the podcast (47 minutes) or read or print the transcript.
• The Pros and Cons of Living with a Terminal Illness (Ellen Diamond, Pulse, 5-9-14)
“It is difficult
to get the news from poems
yet men die miserably every day
for lack
of what is found there.”
~poet William Carlos Williams
• Tig Notaro at SXSW: 'I feel compelled, like I have a purpose' (Alex Needham, The Guardian, 3-19-15). She’s the comic who announced she had been diagnosed with breast cancer live onstage and, when she had recovered, performed topless. No wonder Notaro has such a strong bond with her audience
• Welcome to Cancerland (Barbara Ehrenreich, Harper's Magazine, November 2001)
• What to Say When You're Terminal (Ellen Diamond, Pulse, 5-3-13). "The truth about having an illness for which there is no cure is that you're not dying of it most of the time. Dying is a very particular state in which the body is clearly losing or has lost the battle with the forces breaking it down. Most of the time, I'm not much sicker than people with a mild cold. When my disease waxes and I become more sick, I'm still far from dying, even if I look like a frog with mumps."
• When a life story can be part of cancer treatment (Southern Reporter, 4-26-12). Watch the moving video: Helen Morton's digital story about her husband Forbes's life and final weeks, dying at home, surrounded by his family.
• Why I dread yet another cancer confessional (Mike Addelman, The Guardian, 4-18-18) My wife has terminal cancer. While there’s a place for broadcasters airing their personal stories, their impact can be devastating
• Women With Cancer
• Writing My Way Through Cancer Treatment: How an Amorous Novel Saved My Sanity (Hawley Roddick, Talking Writing, 2-7-11)
• Young Survival Coalition (YSC)
Surgery for cancer
• Collateral Damage (Brenda Scearcy, Pulse: Voices from the heart of medicine, 5-16-14). The immediate after-effects of surgery:
(1) Excruciating shoulder pain, referred from my diaphragm, from gas injected during surgery.
(2) Lymphedema, a build-up of fluid caused by lymph-vessel blockage. Within two days, I looked like a sumo wrestler, with lymph pooling around my middle. No clothes fit.
(3) A walnut-sized pocket of lymph in my right belly. One night at supper, my shirt suddenly grew wet as lymph spurted out of one of the operation slits.
(4) Permanent nerve damage and numbness: Dr. Robert had accidentally cut nerves to my left quadriceps, groin and lower belly.
• Cancer Patients Are Getting Robotic Surgery. There’s No Evidence It’s Better. (Roni Caryn Rabin, NY Times, 3-11-19) High-tech surgical robots aren’t an improvement over traditional operations, the F.D.A. warns. For some patients, the robots may be worse. One clinical trial with robotic systems was stopped early after investigators found that women with cervical cancer who had so-called minimally invasive hysterectomies, including robotically assisted procedures, experienced four times as many cancer recurrences and six times as many deaths, compared with patients who had the more traditional procedure. Yet many physicians continue to recommend robotic surgery to patients, despite the evidence of harm. It is not clear why cervical cancer outcomes were worse following minimally invasive surgeries. So why are these machines allowed in cancer surgery at all? According to a spokeswoman, the F.D.A. does not regulate the practice of medicine.
• My 40-day breast cancer (Emma Gilbey Keller, The Guardian, 4-27-12). A handful of atypical cells one week; a double mastectomy and reconstructive surgery the next. It's a cure, but it's brutal
• Check Please: Choosing the Best Hospital for Your Cancer Surgery (Charlotte Huff, Cure Today, 6-18-13). Taking the time to do your homework can help when it comes to choosing a hospital for your cancer surgery. (You must log in to the discussion group on the subject.)
• For Nursing Home Patients, Breast Cancer Surgery May Do More Harm Than Good (Liz Szabo, KHN, 8-29-18) A new study of 6,000 older patients shows little gain from surgeries for breast cancer. Esserman and Tang said their findings suggest doctors need to treat breast cancer differently in very frail patients. Sophisticated genetic tests can help predict which breast cancers are less aggressive, a finding that could allow 70 percent of patients to avoid chemotherapy. The new study raises questions about the value of screening nursing home residents for breast cancer. The American Cancer Society advises women to be screened as long as they’re in good health and expected to live at least another decade. “It makes no sense to screen people in nursing homes,” Korenstein said. “The harms of doing anything about what you find are far going to outweigh the benefits.” And yet: Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer’s disease, get regular mammograms, according to a study in the American Journal of Public Health.
• See section on overtreatment.
• Evolution of cancer treatments (surgery) (American Cancer Society)
Targeted cancer therapies
. Conquering cancer by attacking the disease’s genetic abnormalities (Aimee Swartz, WaPo, 9-28-18) When Teresa McKeown was diagnosed with breast cancer in 2006, her disease was easily treated with standard therapies. But 11 years later, the cancer returned. This time, it morphed into what’s called triple-negative disease, an aggressive and difficult-to-treat form. “I had one therapy after another,” she said, “and failed them all....But then her luck changed. Through a clinical trial at Moores Cancer Center at UC San Diego Health, a test designed to reveal the genetic abnormalities locked inside tumors found a large number of them in McKeown’s cancer. The results raised the possibility that Opdivo, a drug that triggers the immune system to attack cancer and which was approved to treat melanoma, might work against the metastatic breast cancer cells ravaging McKeown’s body....McKeown and other patients like her are rare but powerful examples of why sequencing the genome of a tumor to uncover the mutant genetics housed in its DNA — a practice known as comprehensive tumor profiling — is fast becoming a cornerstone of cancer treatment....The bevy of treatments aimed against genetic mutations — called targeted therapies — means oncologists have a range of options to sort through for every patient....“Anecdotes of someone who has benefited from a drug,” says West, “should not be mistaken for proof that it will help other people with that condition.” Other experts warn that the evidence supporting routine tumor profiling outside a clinical trial is insufficient. [Excerpts only! Read the whole article!]
• Inside a molecular tumor board: Using genomics to guide personalized cancer treatment (Krista Conger, Cracking Cancer's Code, 2020 Issue 1) "Tumor boards across the country are usually similarly organized, bringing together experts from various medical disciplines to tackle cancers of particular types; Stanford has about 13 tumor boards focused on different tumor types, including breast, head and neck, thyroid and gynecologic cancers.By contrast, Stanford’s molecular tumor board is filled with experts who want to look under the hood of intractable tumors and identify, at a genetic level, what makes them tick. Stanford's Molecular Tumor Board was launched in spring 2015 to use the molecular attributes of individual tumors and identify novel drugs. Together, oncologists, pathologists, cancer geneticists and genetic counselors, informatics experts, and medical fellows and residents comb through a labyrinth of data points, including any mutations in a tumor’s DNA sequence that could be targeted by existing drugs."
• Understanding Targeted Therapy (Cancer.net, 5-20-18) Targeted therapy is a cancer treatment that uses drugs but is different from traditional chemotherapy. It works by targeting specific genes or proteins to help stop cancer from growing and spreading. Doctors often use targeted therapy along with chemotherapy and other treatments.
• Targeted Therapy (National Comprehensive Cancer Network, NCCN) "Targeted therapy stops the action of molecules that are key to the growth of cancer cells. Thus, it affects cancer cells more so than normal cells. Targeted therapy's specific action differs from traditional chemotherapy, which affects all fast growing cells. There are two main types of targeted therapy. The first type is small molecule drugs, which are small enough to enter cells. The second type is monoclonal antibodies, which are too large to enter cells. Instead, monoclonal antibodies affect targets outside of cells or targets on cells' surface." This article explains briefly signaling targets, monoclonal antibodies, EGFR inhibitors, HER2 inhibitors and conjugates, kinase inhibitors, mTOR inhibitors, Hedgehog pathway inhibitors, immune system targets, angiogenesis targets, VEGF receptor inhibitors, hormonal targets, estrogen targets, androgen targets, proteasome targets, histone deacetylase targets, folate targets, and retinoic acid receptor targets.
• Targeted Therapy for Non-Small Cell Lung Cancer (American Cancer Society) Included here as an example for a specific type of cancer. Targeted drugs work differently from standard chemotherapy (chemo) drugs. They sometimes work when chemo drugs don’t, and they often have different side effects. At this time, targeted drugs are most often used for advanced lung cancers, either along with chemo or by themselves.
Radiation therapy
Radiation therapy uses high-energy radiation to shrink tumors and kill cancer cells (1). X-rays, gamma rays, and charged particles are types of radiation used for cancer treatment.--MD Anderson
• Radiation Therapy for Cancer (National Cancer Institute) What is radiation therapy? Does radiation therapy kill only cancer cells? Why do patients receive radiation therapy? How is radiation therapy planned for an individual patient? How is radiation therapy given to patients? Why are some types of radiation therapy given in many small doses? When will a patient get radiation therapy?
Does radiation therapy make a patient radioactive? What are the potential side effects of radiation therapy? What research is being done to improve radiation therapy?
• Radiation for breast cancer (American Cancer Society)
• Table 38: Radiation therapy after mastectomy for invasive breast cancer (Susan G. Komen)
• Rethinking the Standard for Ductal Cancer in Situ (Laura Esserman and Christina Yau, JAMA Network, editorial). Ductal carcinoma in situ (DCIS) "accounts for approximately 20% to 25% of screen-detected breast cancers. The cells that make up DCIS look like invasive cancer both pathologically and molecularly, and therefore the presumption was made that these lesions were the precursors of cancer and that early removal and treatment would reduce cancer incidence and mortality. "We now know that breast cancer encompasses a range of behaviors, from aggressive to indolent; the latter are more likely to surface with screening." "Worse, there may be a slight increase in mortality with radiation therapy, especially if the disease is on the left side" (because the heart is on the left side). Apparently more recent techniques/technology make this less likely.
Screening and testing for cancer
• When to Get a Mammogram (Catherine Roberts, Consumer Reports, 10-25-21) Expert groups often disagree with each other on breast cancer screening. CR makes sense of the different recommendations. Screening should probably be offered every other year from ages 50 to 74, but experts disagree broadly on the numbers. Risks? A false positive can lead to anxiety and unnecessary follow-up testing, including biopsies.
• Screening Tests (Cancer Prevention and Control, Centers for Disease Control and Prevention, 5-2-18) CDC supports screening for breast, cervical, colorectal (colon), and lung cancers as recommended by the U.S. Preventive Services Task Force. Screening means checking your body for cancer before you have symptoms. Getting screening tests regularly may find breast, cervical, and colorectal (colon) cancers early, when treatment is likely to work best. Lung cancer screening is recommended for some people who are at high risk.
• Making colonoscopy-based screening more efficient: A “gateopener” approach (Wiley, 2023) Although colonoscopy is a widely used screening tool for colorectal cancer (CRC), it is relatively inefficient, as most of the screened subjects would never develop CRC even without screening. In the present study, use of a low-threshold fecal immunochemical test (“gateopener” FIT) was investigated as a means of streamlining screening colonoscopy by preselecting individuals most likely to benefit. Simulations revealed that the “gateopener” approach essentially doubled cancer detection rates and prevented greater numbers of CRC cases and deaths compared to conventional screening. The findings indicate that pretesting with low-threshold FITs could markedly improve efficiency of colonoscopy-based screening.
• Screening Tests That Have Been Shown to Reduce Cancer Deaths (National Cancer Institute) Low-dose helical computed tomography Information about colonoscopy, sigmoidoscopy, and high-sensitivity fecal occult blood tests (FOBTs) shown to reduce deaths from colorectal cancer; Low-dose helical computed tomography (shown to reduce lung cancer deaths among heavy smokers); Mammography to screen for breast cancer (shown to reduce mortality from the disease among women ages 40 to 74, especially those age 50 or older); Pap test and human papillomavirus (HPV) testing (reduce the incidence of cervical cancer because they allow abnormal cells to be identified and treated before they become cancer; they also reduce deaths from cervical cancer). They discuss several more screening tests, including PSA.
• Understanding Galleri Test Results. Galleri tests cost $1600 and are not covered by health insurance. "The Galleri multi-cancer early detection test screens for multiple cancers with a single blood test. In a clinical study, the Galleri test was able to detect a signal shared by more than 50 types of cancer." Galleri tests are screening tests, not diagnostic tests. They look for active cancer and do not predict your future genetic risk for cancer. Not all cancers can be detected in the blood. False positives and false negatives do occur.
• Equalizing cancer screening (Krista Conger, Stanford Medicine, 4-29-24) Alternative approach for lung cancer screening outperforms national guidelines. To compare the national guidelines with the alternative method, the researchers looked at the eligibility-to-incidence rate — the number of people in a group eligible for screening compared with the number of lung cancer cases found in that group over a certain time. Higher ratios imply adequate screening; lower ratios imply that some lung cancer cases are occurring in people who were not deemed eligible for screening. Based on the national guidelines, white people had a ratio of 20.3, while African Americans had a ratio of 9.5. The alternative method did better at cutting disparities, resulting in a ratio of 18.4 for white people and 15.9 for African Americans.
• Lung cancer screening guidelines perpetuate racial disparities, Stanford-led study finds (Krista Conger, Stanford Medicine, 10-26-23) National guidelines for lung cancer screening are less effective for African Americans than for whites, Stanford study concludes. A risk-based analysis is more equitable and effective, more likely than the task force guidelines to accurately identify people with lung cancer — a measure known as sensitivity — and fewer screens were needed to detect one case of lung cancer (26 versus 30).
• We're Underutilizing Genetic Testing for Colorectal Cancer ( Pedro Uson, MD, MedPage Today, 1-20-23) Universal germline testing should be part of the standard of cancer care. "While studies offer evidence for the clinical utilityopens in a new tab or window of genetic testingopens in a new tab or window for patients with colorectal cancer, recent researchopens in a new tab or window found there is gross underutilization of GGT for patients with colorectal cancer, even when universal GGT for patients with colorectal cancer is supported by insurance medical policy. This underutilization of GGT is a major inhibitor to disease management, and obstructs patients from receiving access to precision therapies, clinical trials, and treatment based on published management recommendations."
• Scientists Edge Closer to a Blood Test to Detect Cancers (Richard Harris, All Things Considered, NPR, 1-18-18) An overview of a preliminary, experimental test (dubbed CancerSeek) to screen for eight common types of cancer: lung, breast, colon, pancreas, liver, stomach, ovary and esophagus. Story evaluated as Cautious, independent voices help round out NPR’s look at experimental blood test for cancer (HealthNewsReview)
• For Nursing Home Patients, Breast Cancer Surgery May Do More Harm Than Good (Liz Szabo, KHN, 8-29-18) A new study of 6,000 older patients shows little gain from surgeries for breast cancer. Esserman and Tang said their findings suggest doctors need to treat breast cancer differently in very frail patients. Sophisticated genetic tests can help predict which breast cancers are less aggressive, a finding that could allow 70 percent of patients to avoid chemotherapy. The new study raises questions about the value of screening nursing home residents for breast cancer. The American Cancer Society advises women to be screened as long as they’re in good health and expected to live at least another decade. “It makes no sense to screen people in nursing homes,” Korenstein said. “The harms of doing anything about what you find are far going to outweigh the benefits.” And yet: Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer’s disease, get regular mammograms, according to a study in the American Journal of Public Health.
• One In Three Women With Breast Cancer Treated Unnecessarily, Study Concludes (Liz Szabo, Kaiser Health News, 1-9-17) One in three women with breast cancer detected by a mammogram is treated unnecessarily, because screening tests found tumors that are so slow-growing that they’re essentially harmless, according to a Danish study, which has renewed debate over the value of early detection. “By treating all the cancers that we see, we are clearly saving some lives,” says Dr. Otis Brawley, chief medical officer of the American Cancer Society. “But we’re also ‘curing’ some women who don’t need to be cured.” Treating women for cancer unnecessarily can endanger their health, said Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. Radiation can damage the heart or even cause new cancers. Visco notes that breast cancer activist Carolina Hinestrosa, a vice president at the coalition, died at age 50 from soft-tissue sarcoma, a tumor caused by radiation used to treat an early breast cancer. Although researchers can estimate the statistical rate of overdiagnosis, doctors treating actual patients can’t definitively tell which breast tumors need treatment and which might be safely ignored, Brawley said. So doctors tend to err on the side of caution and treat all breast cancers with surgery and, in many cases, radiation and chemotherapy."
• So Much Care It Hurts: Unneeded Scans, Therapy, Surgery Only Add To Patients’ Ills (Liz Szabo, Kaiser Health News, 10-23-17) Research in the New England Journal of Medicine in 2010 showed "that a condensed, three-week radiation course works just as well as the longer regimen....Yet many patients still aren’t told about their choices....only 48 percent of eligible breast cancer patients today get the shorter regimen, in spite of the additional costs and inconvenience of the longer type...."The Choosing Wisely campaign, launched in 2012 by the American Board of Internal Medicine (ABIM) Foundation, aims to raise awareness about overtreatment. The effort, which has been joined by 80 medical societies, has listed 500 practices to avoid. It advises doctors not to provide more radiation for cancer than necessary, and to avoid screening for tumor markers after early breast cancer."
• Rethinking the Standard for Ductal Cancer in Situ (Laura Esserman and Christina Yau, JAMA Network, editorial). Ductal carcinoma in situ (DCIS) "accounts for approximately 20% to 25% of screen-detected breast cancers. The cells that make up DCIS look like invasive cancer both pathologically and molecularly, and therefore the presumption was made that these lesions were the precursors of cancer and that early removal and treatment would reduce cancer incidence and mortality. "We now know that breast cancer encompasses a range of behaviors, from aggressive to indolent; the latter are more likely to surface with screening." "Worse, there may be a slight increase in mortality with radiation therapy, especially if the disease is on the left side" (because the heart is on the left side). Apparently more recent techniques/technology make this less likely.
• When the writer becomes the patient (Karen D. Brown, Boston Globe, 1-29-14). A health journalist who has written about changing guidelines for breast cancer screenings finds herself caught between statistics and personal decisions.
• Doing More Harm Than Good? Epidemic of Screening Burdens Nation’s Older Patients (Liz Szabo, KHN, 12-20-17) Screening tests "in the nation’s oldest patients is highly unlikely to detect lethal disease, hugely expensive and more likely to harm than help since any follow-up testing and treatment is often invasive. testing in the nation’s oldest patients is highly unlikely to detect lethal disease, hugely expensive and more likely to harm than help since any follow-up testing and treatment is often invasive."
• What you’re not being told about ‘free’ public head and neck cancer screening events (Joy Victory, HealthNewsReview, 4-12-17) Judging by the abundant and largely uncritical news coverage, it’s been a major PR win for the Head and Neck Cancer Alliance, which runs the trademarked “Oral, Head and Neck Cancer Awareness Week” and states it “promotes a high volume of free screenings all over the world.” One of the biggest pieces of misinformation touted at these events is that screening saves lives. But as the US National Cancer Institute explains in its page on oral and oropharyngeal cancer screening, “No studies have shown that screening would decrease the risk of dying from this disease.” Screening is a highly lucrative business.
• Proteomics Might Have Saved My Mother’s Life. And It May Yet Save Mine. (Michael Behar, NY Times, 11-15-18) 'The 20,000 or so known proteins in each human body might soon be used as an early warning system for disease.... Proteomics, or the study of proteins, has long offered the ability to identify many biological processes.... Now, with the advent of more powerful computers and a form of artificial intelligence called machine learning, medical experts are imagining a future where proteomics will realize its power to tell us, to an incredible degree, what’s transpiring inside our bodies.... As the workhorses in the human body, proteins play a role in nearly all of its biological processes.... Researchers are now learning that diseases have their own unique proteomic patterns.... “Diagnostic medicine has always been about proteins,” says Philip Ma, Seer’s president and chief business officer. “All proteomics is allowing you to do is to look at them in bunches instead of one at a time.” ...Doctors won’t embrace the technology until they are sure that protein screenings provide reliable results, but improving reliability is largely contingent on widespread adoption....[It's still early days.] While allocating most resources to the big three — cancer, heart disease and diabetes — SomaLogic also is delving into realms that traditionally haven’t been studied with proteomics, such as smoking, social deprivation, excessive alcohol consumption and fitness.'
Avoiding overtreatment or
unnecessary and possibly harmful treatment
"There's pervasive media bias toward hyping treatment benefits
• Doing More Harm Than Good? Epidemic of Screening Burdens Nation’s Older Patients (Liz Szabo, KHN, 12-20-17) Screening tests "in the nation’s oldest patients is highly unlikely to detect lethal disease, hugely expensive and more likely to harm than help since any follow-up testing and treatment is often invasive. Testing in the nation’s oldest patients is highly unlikely to detect lethal disease, hugely expensive and more likely to harm than help since any follow-up testing and treatment is often invasive."
• Being Mortal: Medicine and What Matters in the End by Atul Gawande. A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: "those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
• Unneeded Scans, Therapy, Surgery Add to Ills of Breast Cancer Patients (Liz Szabo, Kaiser Health News, 12-6-17) Physician leaders should remain mindful of the extremely costly and potentially harmful treatments they and their teams order. Medical research published in The New England Journal of Medicine in 2010 showed that a condensed, three-week radiation course works just as well as the longer regimen. From duplicate blood tests to unnecessary knee replacements, millions of patients are being bombarded with screenings, scans and treatments that offer little or no benefit, Makary says. Doctors estimated that 21 percent of medical care is unnecessary, according to a survey Makary published in September in Plos One.
• Check the Open Payments database (launched under the Affordable Care Act) to see if the doctor prescribing an expensive drug received payments from the drug manufacturer, particularly if a much less expensive but effective drug was also available. See Is there a conflict of interest behind your cancer diagnosis? (Benjamin Maser, STAT, 10-30-17) as well as Could financial conflicts be influencing cancer care guidelines? (Tara Haelle, Covering Health, 9-26-19)
• Consumer Safety Guide Recent information on the most popular prescription medications and FDA-approved medical devices that could be endangering your health or putting your loved ones at risk.
• One in Three Women With Breast Cancer Treated Unnecessarily, Study Concludes (Liz Szabo, Kaiser Health News or KHN, 1-9-17) One in three women with breast cancer detected by a mammogram is treated unnecessarily, because screening tests found tumors that are so slow-growing that they’re essentially harmless, according to a Danish study, which has renewed debate over the value of early detection. “By treating all the cancers that we see, we are clearly saving some lives,” says Dr. Otis Brawley, chief medical officer of the American Cancer Society. “But we’re also ‘curing’ some women who don’t need to be cured.” Treating women for cancer unnecessarily can endanger their health, said Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. Radiation can damage the heart or even cause new cancers. Visco notes that breast cancer activist Carolina Hinestrosa, a vice president at the coalition, died at age 50 from soft-tissue sarcoma, a tumor caused by radiation used to treat an early breast cancer. Although researchers can estimate the statistical rate of overdiagnosis, doctors treating actual patients can’t definitively tell which breast tumors need treatment and which might be safely ignored, Brawley said. So doctors tend to err on the side of caution and treat all breast cancers with surgery and, in many cases, radiation and chemotherapy."
• How Medical Devices Do Harm (Matthew Bin Han Ong, The Cancer Letter, 7-4-14) 'On Oct. 17, 2013, a surgical instrument called a power morcellator tore into the uterus of Amy Reed, an anesthesiologist at Beth Israel Deaconess Medical Center, pulverizing what were believed to be benign fibroids. The “minimally invasive” hysterectomy, a routine procedure, was performed at the Brigham and Women’s Hospital, a teaching hospital of Harvard Medical School. Alas, Reed’s uterus contained an occult sarcoma, which the morcellator proceeded to spread through her abdominal pelvic cavity. Over ensuing months, as Reed battled to stay alive, her husband, Hooman Noorchashm, a cardiothoracic surgeon and, at the time, a lecturer at Harvard, waged a national campaign to put an end to the practice of power morcellation.'
• Feeding the Cancer Machine (Shannon Brownlee, NY Times, 4-1-07) "Could it be that at least some of the $100 billion we spend each year on detecting and treating this disease is used not to improve the health of patients, but rather to prop up hospital finances? ...Cancer makes money for hospitals in a couple of ways. First, it’s a disease of aging, and that means the majority of people who get it are covered by Medicare, which always pays its bills. Second, many treatments for cancer patients are particularly profitable, especially compared to those for other diseases....Another big source of profit is cancer drugs....Hospitals make money on drugs by purchasing wholesale and charging insurers full price. "
• Rethinking the Standard for Ductal Cancer in Situ (Laura Esserman and Christina Yau, JAMA Network, editorial). Ductal carcinoma in situ (DCIS) "accounts for approximately 20% to 25% of screen-detected breast cancers. The cells that make up DCIS look like invasive cancer both pathologically and molecularly, and therefore the presumption was made that these lesions were the precursors of cancer and that early removal and treatment would reduce cancer incidence and mortality. However, long-term epidemiology studies have demonstrated that the removal of 50 000 to 60 000 DCIS lesions annually has not been accompanied by a reduction in the incidence of invasive breast cancers. "We now know that breast cancer encompasses a range of behaviors, from aggressive to indolent; the latter are more likely to surface with screening." "Worse, there may be a slight increase in mortality with radiation therapy, especially if the disease is on the left side" (because the heart is on the left side). Apparently more recent techniques/technology make this less likely. (Scroll down in section on breast cancer for fuller section on DCIS cancer)
• So Much Care It Hurts: Unneeded Scans, Therapy, Surgery Only Add To Patients’ Ills (Liz Szabo, Kaiser Health News, 10-23-17) Research in the New England Journal of Medicine in 2010 showed "that a condensed, three-week radiation course works just as well as the longer regimen....Yet many patients still aren’t told about their choices....only 48 percent of eligible breast cancer patients today get the shorter regimen, in spite of the additional costs and inconvenience of the longer type....A growing number of patients and doctors are concerned about overtreatment, which is rampant across the health care system, argues Dr. Martin Makary, a professor of surgery and health policy at the Johns Hopkins University School of Medicine in Baltimore. From duplicate blood tests to unnecessary knee replacements, millions of patients are being bombarded with screenings, scans and treatments that offer little or no benefit, Makary said....Those procedures aren’t only expensive. Some clearly harm patients. Overzealous screening for cancers of the thyroid, prostate, breast and skin, for example, leads many older people to undergo treatments unlikely to extend their lives, but which can cause needless pain and suffering....The high rate of overtreatment in breast cancer is “shocking and appalling and unacceptable,” said Karuna Jaggar, executive director of Breast Cancer Action, a San Francisco-based advocacy group. “It’s an example of how our profit-driven health system puts financial interests above women’s health and well-being.” ... "In 2012, the American Society for Clinical Oncology, the leading medical group for cancer specialists, explicitly told doctors not to order the tumor marker tests and advanced imaging — such as CT, PET and bone scans — for survivors of early-stage breast cancer. Yet these tests remain common....Beyond wasted time and worry for women, these scans also expose them to unnecessary radiation, a known carcinogen, Lyman said. A National Cancer Institute study estimated that 2 percent of all cancers in the United States could be caused by medical imaging.
...Kolb asked her doctor about a 2008 Canadian study, which was later published in the influential New England Journal of Medicine, showing that three weeks of radiation was safe. He agreed to try it....Even the short course left her with painful skin burns, blisters, swelling, respiratory infections and fatigue. She fears these symptoms would have been twice as bad if she had been subjected to the full seven weeks."
"The Choosing Wisely campaign, launched in 2012 by the American Board of Internal Medicine (ABIM) Foundation, aims to raise awareness about overtreatment. The effort, which has been joined by 80 medical societies, has listed 500 practices to avoid. It advises doctors not to provide more radiation for cancer than necessary, and to avoid screening for tumor markers after early breast cancer."
• Hard decisions about cancer (PDF, Choosing Wisely, ABIM Foundation, American Board of Internal Medicine, Sept. 2012) 5 tests and treatments to ask questions about (along with the questions to ask):
1) Cancer treatments at the end of life (when palliative or hospice care is a better option). "Many patients who receive palliative or hospice care live at least as long as those who don't, and their quality of life is better, too."
2) Imaging tests for early prostate cancer
3) Imaging tests (beyond mammograms) for early breast cancer
4) Follow-up tumor marker tests and advanced-imaging test for people treated for breast cancer
5) White blood cell growth factors for preventing infection.
• Scientists Seek to Rein In Diagnoses of Cancer (Tara Parker-Pope, NY Times, 7-29-13) But even after years of aggressively treating conditions like seemingly precancerous lesions and early-stage cancers — like ductal carcinoma in situ, small thyroid tumors and early prostate cancer-- there has not been a commensurate reduction in invasive cancer, suggesting that overdiagnosis and overtreatment are occurring on a large scale.
• From Twitter to Treatment Guidelines, Industry Influence Permeates Medicine (Charles Ornstein, Shots, NPR, 1-17-17) "The very way we all think about disease—and the best ways to research, define, prevent, and treat it—is being subtly distorted because so many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximize markets for drugs and devices," write researchers Ray Moynihan and Lisa Bero. More than two-thirds of patient advocacy organizations that responded to a survey indicated that they had received industry funding in their last fiscal year; 12 percent said they received more than half of their money from industry. Does that influence their policies? " Organizations that received funding from opioid manufacturers were less supportive of guidelines proposed by the CDC to limit prescribing of the drugs for chronic pain." It seems likely that guidelines for the management of high cholesterol and hepatitis C may have been influenced by committee members receiving money from industry. Use Pro Publica's Dollars for Docs search tool to see if your doctor receives money from drug or device companies.
• When Evidence Says No, but Doctors Say Yes (David Epstein and Pro Publica, The Atlantic, Feb. 2017) Long after research contradicts common medical practices, patients continue to demand them and physicians continue to deliver. The result is an epidemic of unnecessary and unhelpful treatments. "The 21st Century Cures Act—a rare bipartisan bill, pushed by more than 1,400 lobbyists and signed into law in December—lowers evidentiary standards for new uses of drugs and for marketing and approval of some medical devices. Furthermore, last month President Donald Trump scolded the FDA for what he characterized as withholding drugs from dying patients."...According to Vinay Prasad, an oncologist and one of the authors of the Mayo Clinic Proceedings paper, medicine is quick to adopt practices based on shaky evidence but slow to drop them once they’ve been blown up by solid proof. Physician Adam Cifu and Prasad coauthored a 2015 book, Ending Medical Reversal, a call to raise the evidence bar for adopting new medical standards.
"If the treatment were Pixy Stix, you’d have a similar effect. One group gets Pixy Stix, and when their cancer progresses, they get a real treatment.” “Relative risk is just another way of lying.”
Finding hospitals and cancer centers
• Comprehensive Cancer Centers (hospitals so designated by the National Cancer Institute, NCI)
• Find a Comprehensive Cancer Center, by state or region (as designated by the NCI)
• Hospital Compare (Medicare.gov)
• U.S. News & World Report on Best Hospitals
• Ratings for hospitals, doctors, surgeons, home health agencies, nursing homes (Comfortdying.com blog entry)
• Hospital Ratings: A Guide for the Perplexed (Abigail Zuger, MD, for JAMA) May 19, 2015, Vol 313, No. 19. Full content available free to subscribers)
• The best U.S. hospitals for cancer care, diabetes and other specialties, ranked (Sara Moniuszko, HealthWatch, CBS News, 7-16-24)
---Best Hospitals by Specialty (U.S. News & World Report, 7-16-24) In 2024-2025 U.S. News Best Hospitals ranked hospitals in the U.S. in 15 adult specialties as well as recognized hospitals by state, metro and regional areas for their work in 20 more widely performed procedures and conditions. Of the nearly 5,000 hospitals analyzed and 30,000 physicians surveyed, only 160 hospitals ranked in at least one of the specialties.
• National Cancer Institute (NCI) at the National Institutes of Health.
• Check Please: Choosing the Best Hospital for Your Cancer Surgery (Charlotte Huff, Cure Today, 6-18-13). Taking the time to do your homework can help when it comes to choosing a hospital for your cancer surgery. (You must log in to the discussion group on the subject.)
• Hospital Quality Reporting by US News & World ReportWhy, How, and What's Ahead (Ben Harder1; Avery Comarow, in JAMA, 5-19-15)
• Community Oncology Alliance (COA) , a national nonprofit group dedicated to community cancer care.
Cancer by the numbers: statistics
Cancer is not a single disease. There are many forms of cancer.Statistics (average survival rates, for example) vary by cancer type.
• Facebook Live: The Cancer Divide (KHN, 10-5-18) If you get cancer, how long you live may depend on factors outside of your control: your race or ethnicity. Where you live. Your age. The type of insurance you have. See Californians Living Longer With Cancer — Some Longer Than Others (Anna Gorman, Kaiser Health News, 8-30-18) California Healthline’s Facebook Live addresses disparities in cancer diagnosis, treatment and care — and what can be done about them.
• The Cancer Almanac (Ryan Bradley, NY Times Magazine, 5-12-16) For decades, science has classified cancers by the organ or system in which they begin. That taxonomy is slowly being replaced — but it’s still the indispensable way to understand the odds. Just 10 cancers — in eight organs, the blood and the lymphatic system — will account for more than 70 percent of new cancer cases in the United States this year, according to estimates from the American Cancer Society. Bradley's almanac lists cancers in order of occurrence — the most frequently occurring first — along with an estimate of the number of deaths that the cancer will cause this year, and its five-year relative survival rate (as compared with people without cancer).
• Nomograms: Prediction Tools (for doctors and patients) (Memorial Sloan Kettering Cancer Center). Plus in the information true for you and learn your risk for particular types of cancer.
• Disparities in Cancer Care (Milly Dawson, Journal of Oncology Practice, Sept. 2006) Which groups experience barriers to adequate cancer prevention and care, and what form do those barriers take?
• Cancer statistics (Steve Dunn's site). See also The Median Isn't the Message (Stephen Jay Gould)
• "While there have been tremendous achievements in maximizing cure rates for children with leukemia in the United States, not everyone is benefiting from these advances. We know there are differences in survival, with children from historically marginalized Hispanic and Black communities faring worse than white children," said Dr. Castellanos. "There is an urgent need to identify the reasons why these differences in survival are occurring, including an assessment of the barriers to obtaining health care and strategies to successfully reduce barriers." ~ Wiley, Cancer Newsroom, Feb. 2023
• Data, Surveillance Systems & Statistical Reports (excellent site, Missouri Dept of Health & Senior Services)
• Cancer Statistics (National Cancer Institute, or NCI)
• Finding and Understanding Cancer Statistics (National Cancer Institute)
• Understanding Cancer Prognosis (NCI)
• What Five Years Really Means (Curtis Pesmen, Cure 3-16-07) Survival statistics mean different things for different cancers. Cancer "cells with short, reproductive doubling times, such as testicular cancer and some leukemias, may be more apt to reach the level of medical cure after five years....But solid tumors, such as breast, colorectal and prostate cancers, that have cellular doubling times of 100 days or longer, remain a more mysterious animal. Their microscopic cells can hide, even through apparent remission, evading screening techniques. Long-term behavior of these tumors is tougher to predict, thus the language of survival rates instead of cure."
• Cartoon about cancer prognosis
• Childhood Cancer Survivors: Cured but With Long-Term Health Risks. (KS Baker and E Chow, Oncology, 11-29-15).
• From Cancer Patient to Cancer Survivor: Lost in Transition. The Institute of Medicine's first confirmed reports on the long-term effects of different types of cancer treatment. (Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board, edited by Maria Hewitt, Sheldon Greenfield, and Ellen Stovall), 2005. A National Academies Press book, available online.
• Cancer facts & statistics (American Cancer Society)
• When the writer becomes the patient (Karen D. Brown, Boston Globe, 1-29-14). A health journalist who has written about changing guidelines for breast cancer screenings finds herself caught between statistics and personal decisions.
• In Developing World, Cancer Is a Very Different Disease (George Johnson, NY Times, 12-18-15) The United States, Canada, Australia and the countries of Western Europe have much higher incidence of cancer than the poor countries of the world, in which people are likely to die of malnutrition, diarrhea, "pneumonia, tuberculosis, influenza, malaria, AIDS or even traffic accidents long before their cells accumulate the mutations that cause colon cancer." "But that is just part of the story. Cancers that arise in poorer countries are far less likely to be survived." Infection is a major factor in cancers in poorer countries: cervical cancer, stomach cancer, liver cancer.
• Gaps in insurance policies make oral drugs too pricey for some cancer patients (Sandra G. Boodmma, Washington Post, 4-27-10)
• Cancer Meds Often Bring Big Out-Of-Pocket Costs For Patients, Report Finds (KHN) Cancer patients shopping on federal and state insurance marketplaces often find it difficult to determine whether their drugs are covered and how much they will pay for them, the advocacy arm of the American Cancer Society says in a report that also calls on regulators to restrict how much insurers can charge patients for medications. Most insurance plans in the six states that were examined placed all or nearly all of the 22 medications studied into payment “tiers” that require the biggest out-of-pocket costs by patients. Those drugs include some well-known treatments, such as Gleevec for certain types of leukemia and Herceptin for breast cancer, and even some generics. Often, that tier means patients pay a percentage of the cost of the drugs, rather than a flat dollar amount, which is more common for drugs placed into lower cost-sharing categories.
• Cancer increases bankruptcy risk, even for insured (Barbara Mantel, NBC News, 5-15-13) "Bankruptcy rates among the younger groups were up to 10 times that of the older patients.
People who have fewer assets, less income and less generous insurance because of entry level jobs or no insurance are more vulnerable to severe financial distress,' Ramsey says. The highest rates of bankruptcy were among those with thyroid cancer, which mostly affects younger women. The lowest were in men with prostate cancer, which typically strikes at an older age."
General information and approaches to cancer care and treatment
"Cancer" is really many diseases. Don't expect a single set of answers, or a "cure."
Advice from one patient: You will be asked to get scans made, and a disc of those scans will become available. Get that disc as soon as possible, and take it along to all cancer-related doctor appointments.
• National Cancer Institute (NCI) at the National Institutes of Health. Start here. Page on News and events contains information about new clinical trials or results.
• PDQ - National Cancer Institute's Comprehensive Database
---NCI Drug Information Summaries
---NCI Dictionaries
---Other Ways to Get PDQ Information
---PDQ in Other Languages
• What are the different types of tumor? Explained (Yvette Brazier, Medical News Today, 8-21-19)
Benign: Adenomas, fibroids or fibromas (in the womb), hemangiomas, lipomas.
Premalignant: Actinic keratosis (or solar keratosis), cervical dysplasia, metaplasia of the lung, leukoplakia (thick white patches in the mouth).
Malignant: Carcinoma, sarcoma, germ cell tumor, blastoma.
• Cancer Moonshot (National Cancer Institute) There will be many stories online about this.
Chronicling a Modern Plague, Susan Okie's brief Washington Post summary of the history of cancer treatment and understanding, in a review of the book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.
Also a video documentary: The Story of Cancer: The Emperor of All Maladies which examines cancer with a cellular biologist’s precision, a historian’s perspective and a biographer’s passion. The series artfully weaves three different films in one: a riveting historical documentary; an engrossing and intimate vérité film; and a scientific and investigative report.
• The First Cell: And the Human Costs of Pursuing Cancer to the Last by oncologist Azra Raza. Catch the gist of her message in an interesting radio interview: Q&A with Dr. Azra Raza (Q&A, C-Span, 12-3-19; listen or read transcript). Dr. Azra Raza, professor of medicine and director of the MDS Center at Columbia University, takes a critical look at the way we have treated cancer in the United States since the early 1970s, discusses how patient care can be improved, and recommends that we shift funding for cancer research toward early detection rather than late treatment.. ‘Using chemotherapy, immune therapy, and stem cell transplant to cure cancer…is like beating the dog with a baseball bat to get rid of its fleas.’
• American Cancer Society (ACS)
• Reimagining Survival: Better cancer diagnostics and treatments are in the works (Hanae Armitage and Krista Conger, Stanford Medicine, 4-7-2020) From new imaging techniques to revved-up immune systems, it’s apparent that we’re on the verge of making big strides in cancer diagnosis and treatment. “We are at a critical point in the history of cancer now,” said Artandi, the Stanford Cancer Institute’s director. “Over the next five years we need to continue with fundamental basic science discoveries in cancer, while translating these findings to our cancer patients by expanding and accelerating our clinical trials. This pipeline bringing new drugs and other therapies to our cancer patients is an essential step in curing patients with cancer.”
Researchers are analyzing molecules that latch on to DNA to reveal clues about the underpinnings of cancer.
The proof is in the particulate. By shooting beams of oxygen toward tissue samples, scientists are trying to piece together an in-depth picture of cancer's molecular secrets.
Tumor scraps: Researchers are analyzing molecules that latch on to DNA to reveal clues about the underpinnings of cancer.
Nothing wasted: First there was the smartphone, then the smartwatch — now scientists at Stanford have created a smart toilet, detecting diseases through data that’s usually discarded.
• Radical Remission: Surviving Cancer Against All Odds by Kelly A. Turner, who uncovers nine factors that can lead to a spontaneous remission from cancer—even after conventional medicine has failed.
1. Radically changing your diet.
2. Taking control of your health.
3. Following your intuition.
4. Using herbs and supplements.
5. Releasing suppressed emotions.
6. Increasing positive emotions.
7. Embracing social support.
8. Deepening your spiritual connection.
9. Having strong reasons for living.
• CancerCare Counseling. Support Groups. Education. Financial Assistance.
• ACOR (Association of Cancer Online Resources) Find online communities for particular types of cancer.
• Oncolink (the first online site for cancer information and still good for comprehensive cancer information
• Nomograms: Prediction Tools (for doctors and patients) (Memorial Sloan Kettering Cancer Center). Plug in the information true for you and learn your risk for particular types of cancer.
• Free NCI publications about cancer
• Steve Dunn's Cancer Guide
• American Childhood Cancer Organization (ACCO, for children diagnosed with cancer). Helps with recovery--distributes free books and materials about childhood cancer, advocates for less toxic treatments, etc. Click here to order free books for families of children with cancer.
• Learn about cancer (American Cancer Society). Scroll down and click on a specific cancer type.
• Changing the Cancer Conversation (Amy Paturel, Delta Sky, June 2016) As chronic diseases go, cancer is a behemoth. According to the National Cancer Institute, the death toll from cancer in the United States hovers around 600,000 for adults and 2,000 for children and adolescents. But the tide may be turning. New approaches, therapies, and surgical advances are paving the way for treatment breakthroughs and higher survival rates. "If we study why some patients respond and others don't, we can make progress in terms of combining immunotherapy with other drugs and treatments to get better results," says Antoni Ribas, professor of medicine at UCLA and director of the tumor immunology program at the Jonsson Comprehensive Cancer Center.
• Treating Cancer: Hope V Hype (KFF Health Facebook group)
• Find an NCI-Designated Cancer Centers (National Cancer Institute). NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States. Find a center near you and learn about its patient services and research capabilities.
• Covering health care – as a cancer patient (Joanne Kenen, Covering Health, AHCJ, 6-7-19) Being a cancer patient has changed what stories she's interested in covering and what questions she asks, she now knows the horror stories are true, she's aware of the "perverse incentives" (that sick patients are lucrative), and she now appreciates the vulnerability of the uninsured struggling for care for life-threatening illnesses or chronic conditions.
• Tumor Markers (National Cancer Institute)
• Symptoms (NCI)
• Cancer staging (NCI)
• Questions to ask your doctor about your diagnosis (NCI) You have a right to see your pathology report. A pathologist explains this to a breast cancer patient wondering why the surgeon went in for another "slice" : If the margins are clear, no point in cutting. The surgeon is justified to take another sample if the margins are not clear.
• What Can Cancer Specialists Learn From Patients Who Beat All The Odds? (Carey Goldberg, WBUR News, 6-27-18). Based at Harvard Medical School, the project aims to become the first national registry for exceedingly rare cancer patients who beat overwhelming odds and respond mysteriously — even uniquely — well to treatments that failed to help others. The Network of Enigmatic Exceptional Responders (NEER) project, based at Harvard University, aims to become the first national registry for exceedingly rare cancer patients who beat overwhelming odds and respond mysteriously — even uniquely — well to treatments that failed to help others.
• Newly diagnosed cancer patients need help navigating the system (Samyukta Mullangi and Vinayak Venkataraman, STAT, 5-32-23)
• Patient navigators can serve crucial roles in hospitals (Kelly Michelson, STAT, 12-14-16) In pediatric intensive care units, in particular, it's important to have a "point person," who can guide parents facing life-changing decisions for their child. Patient navigator programs emerged partly in reaction to the increasing specialization in health care. The barrage of new medical knowledge and innovation, while leading to life-saving advances, has created a culture of super-specialized clinicians. In pediatric cardiology alone, for example, there are specialists in congenital heart disease, rhythm problems, imaging, procedures, and heart failure.
• People-Powered Medicine: NEER Study “NEER” stands for Network of Enigmatic Exceptional Responders. "We are looking for people who have had a unique response to cancer treatments that are not effective for most other patients. Previously, these patients were dismissed as outliers under the assumption that not much could be learned, but this thinking has recently reversed dramatically. Just as detailed study of rare diseases is illuminating basic biology in a way that informs larger disease populations, early study of exceptional responders is revealing new insights into tumor heterogeneity, overcoming heterogeneity-imposed therapeutic barriers, enabling more sophisticated pre-trial patient screening and enriching genomic profiling studies."
• Understanding cancer prognosis (NCI)
• Cancer types, types of treatment, and other topics (National Cancer Institute)
• Top 100 Drug Information Resources You Can Trust (CAPHIS)
• Top 100 Health Websites You Can Trust (CAPHIS)
• Drug dictionary (National Cancer Institute)
• Drug information (Medline Plus)
•••The Cochrane Collaboration. Cochrane Reviews are systematic reviews of primary research in human health care and health policy -- the highest standard in evidence-based health care.) See The Cochran Library and Cochrane summaries. There is also a blog.
• Recommended Websites for Cancer Information (Medical Library Association)
• Partial List of Patient Cancer Libraries in the United States and Canada (Cecilia C. Railey, Medical Library Association)
• Is there a conflict of interest behind your cancer diagnosis? (Benjamin Maser, STAT, 10-30-17) Today, pathologists don’t restrict themselves to just diagnosing disease. Through the use of tests called “companion diagnostics,” pathologists also help determine whether a patient may be eligible for specific targeted treatments, such as Herceptin for breast cancer or Keytruda for a variety of cancers. These powerful drugs come with hefty price tags. Modern cancer treatments routinely cost more than $100,000 per year. The manufacturers of these drugs and their companion diagnostic testing know that pathologists play an essential role in determining who gets these costly drugs. Check the Open Payments database (launched under the Affordable Care Act) to see if the doctor prescribing an expensive drug received payments from the drug manufacturer, particularly if a much less expensive but effective drug was also available.
• Cancer treatments may harm the heart (Harvard Health Publishing, Harvard Medical School, Aug 2012) "Radiation therapy and chemotherapy are increasing the number of people who survive cancer. However, they can also cause these same people to develop cardiovascular disease. Radiation therapy can cause heart attack, heart failure, and arrhythmias. Traditional and novel chemotherapy agents can damage the heart or peripheral blood vessels, or cause problems with clotting or blood lipids. Some serious cardiovascular effects occur while the chemotherapy is being given; others appear long after cancer has become a distant memory." Chemotherapy can also have a harmful effect on people with heart disease and conflict with their medications.
• We Need to Raise the Bar to Improve Cancer Treatments. What’s the Best Way to Do It (Jacqueline Zummo, Health Affairs blog, 7-26-17) Headline results from initial clinical trials do not predict the ultimate value of a treatment. Drug development has become more expensive. A small trial is more likely to be a false positive than a large trial with the same nominal level of statistical significance. Which bars should be raised to address those realities? 1. Empowered patients and informed physicians; 2. Better business models; 3. Innovation in science and statistics.
• Special issue: Frontiers in cancer therapy (Science Magazine, March 17, 2017)
• Cancer Signs and Symptoms, including Cancer Symptoms Men Are Most Likely to Ignore and Cancer Symptoms Women Are Most Likely to Ignore (Melanie Haiken, Caring.com)
• Cancer, Detection & Treatment (MedicineNet.com)
• The Improvisational Oncologist(Siddartha Mukherjee, The Health Issue, The New Anatomy of Cancer, NY Times Magazine, 5-12-16). In an era of rapidly proliferating, precisely targeted treatments, every cancer case has to be played by ear. The thought that every individual cancer might require a specific individualized treatment can be profoundly unsettling. Researchers have discovered that cancers they once assumed were quite different might be similar genetically, which means a treatment that used to work for only a small group of patients now might help a much larger group. An excellent explanation of how cancer works. Also, look at The Cancer Almanac (Ryan Bradley, NY Times Magazine, 5-12-16)
• Medicine Gets Personal (Aliyah Baruchin, Columbia Medicine, Spring 2014). At Columbia, “personalized medicine” is more than a buzz term The new discipline known as network medicine, for example, looks at the entire network of biological processes at work in complex diseases. The idea is to use data from gene, protein, and metabolic interactions, in conjunction with clinical observations and an understanding of disease and pharmacologic processes, to develop the best, most “personalized,” treatment for each patient.
• Lessons on dealing with critical illness (Linda Knapp, Seattle Times, 5-17-06) Moral of this story: Before a major illness strikes, talk to your significant other(s) about how such a crisis would be handled, from covering medical bills to managing child-care issues.
• Adventures in Choosing Wisely (Amy Berman, HealthAGEnda 10-23-14) "I am four years into one of the most devastating diagnoses and I haven’t visited a single hospital. This means that my care is much lower cost than others in my situation. How is this possible? One answer is that my health care team and I choose wisely."It’s astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost."
• Choosing Wisely, a national movement led by the ABIM (American Board of Internal Medicine) Foundation and funded by the Robert Wood Johnson Foundation that engages more than 60 provider organizations to identify procedures, tests, and treatments that deliver quality care at a lower cost. The evidence-based recommendations coming out of the provider organizations inform clinicians and the public to improve the quality of care.
• Environment and lifestyle may play a large role in cancer (Jen Christensen and Kevin Flower, CNN, 12-18-15)
• Scientists Found Worrisome New Evidence About Roundup and Cancer (Tom Philpott, Mother Jones, 3-14-19) And a jury awarded a man $80 million in damages after he claimed the chemical caused him to develop non-Hodgkin lymphoma (NHL), a type of cancer. According to the AP, the case is especially significant “because the judge is overseeing hundreds of Roundup lawsuits and has deemed it a ‘bellwether trial.'”
• A welcome side effect: Novartis anti-inflammatory may cut risk of lung cancer, study finds (Meghana Keshavan, STAT, 8-27-17) The "biologic drug canakinumab from Novartis (NVS) — which has thus far only been approved to treat a rare disease — lowered the incidence of cardiovascular complications by 15 percent" -- in line with the hypothesis that "by targeting an inflammatory pathway seen in heart disease, one could lower the risk for heart attack, stroke, and cardiovascular death." "Now, the researchers have found that the drug had a surprising (and welcome) side effect: It also sharply cut the rates of lung cancer... Among patients who were given the lowest dose of canakinumab, lung cancer rates dropped 26 percent. A medium dose led to a 39 percent decline in lung cancer. And the highest dose decreased incidence by a startling 67 percent. Patients who received this highest dose also had about half the rate of overall cancer death, compared to those who received a placebo....It’s very exploratory, and needs to be confirmed. And while the biology is obviously very exciting and makes a lot of sense, it’s not yet clear how one would translate that into treatment algorithms for someone who already has lung cancer."
• Living With Cancer: Collateral Damage (Susan Gubar, Well, NY Times, 8-27-15) Read this so you know to ask your doctors about the possibly negative consequences of each type of treatment considered.
• Can Good Care Produce Bad Health? (Amy Berman, RN, The Health Care Blog, 8-15-12) "I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited....In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand.
• Dictionary of cancer terms (National Cancer Institute)
Progression-free survival (PFS), defined as the time from random assignment in a clinical trial to disease progression or death from any cause, has recently become an endpoint of considerable interest in the study of new oncology drugs.
• Substantial contribution of extrinsic risk factors to cancer development ( Song Wu, Scott Powers, Wei Zhu & Yusuf A. Hannun, Nature, 1-7-16) External factors such as exposure to toxins and radiation are a major risk factor in developing cancer, the new study says. "Environmental factors play important roles in cancer incidence and they are modifiable through lifestyle changes and/or vaccination" the authors write. (Via Gale Maleskey--thanks.)
• Cancer doctors leading campaign to boost use of HPV vaccine (Laurie McGinley, WaPo, 6-19-16) The nation’s leading cancer doctors are pushing pediatricians and other providers to help increase use of the HPV vaccine, which studies show could help avert tens of thousands of cancer cases during young Americans’ lives. A decade after its controversial introduction, the vaccine remains stubbornly underused. Infections linked to the human papillomaviruscan cause a half-dozen cancers, including more than 90 percent of anal and cervical cancers; 70 percent of vaginal, vulvar and oropharyngeal, or middle throat, cancers; and 60 percent of penile cancers.
• Dietary Guidelines (Health.gov)
• Cancer Patients and Doctors Struggle to Predict Survival (Amanda Aronczyk, Shots, NPR, 2-10-15) "A prognosis is not an absolute number. Doctors often look up data gathered by the National Cancer Institute or the American Cancer Society, or they will use their own clinical expertise. The data are typically given as a median, which is different from an average. A median is the middle of a range. So if a patient is told she has a year median survival, it means that half of similar patients will be alive at the end of a year and half will have died.
• Beating the Odds: Cancer Outliers (JoBeth McDaniel, AARP Bulletin, March 2016) Some patients live years after being told to get their affairs in order. Here's how a few of them did it.
• MIA In The War On Cancer: Where Are The Low-Cost Treatments? (Jake Bernstein, Pro Publica and The Daily Beast, 4-23-14) Big Pharma’s focus on blockbuster cancer drugs squeezes out research into potential treatments that are more affordable. Vikas Sukhatme, Harvard faculty dean for academic programs at Beth Israel Deaconess Medical Center in Boston and the Victor J. Aresty Professor of Medicine at Harvard Medical School, and his wife Vidula, an epidemiologist, have spearheaded a new nonprofit, Global Cures, to promote alternative treatments that are unlikely to attract commercial interest from drug companies. Global Cures calls these forsaken therapies, "financial orphans." To help patients and their doctors, the nonprofit is producing reports that explain the science behind promising orphan therapies — those that have shown merit in animal studies and limited human data. And Global Cures also has set itself a more challenging goal — to find the money for clinical trials.
• Financial Orphan Therapies Looking For Adoption (Vikas Sukhatme, Kathy Fang, Andrew Lo, and Vidula Sukhatme, Health Affairs, 3-6-14)
• New Surgery Technique Expands Treatment Options for Brain Tumor Patients (Dana Farber Cancer Institute, 9-1-14)
• Scientists Seek to Rein In Diagnoses of Cancer (Tara Parker-Pope, NY Times, 7-29-13) A group of experts advising the National Cancer Institute has recommended changing the definition of cancer and eliminating the word from some common diagnoses as part of sweeping changes in the nation’s approach to cancer detection and treatment. The impetus behind the call for change is a growing concern that hundreds of thousands of people are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that are so slow growing they are unlikely to ever cause harm. The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these so-called incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem. The concern, however, is that since doctors do not yet have a clear way to tell the difference between benign or slow-growing tumors and aggressive diseases with many of these conditions, they treat everything as if it might become aggressive. As a result, doctors are finding and treating scores of seemingly precancerous lesions and early-stage cancers — like ductal carcinoma in situ (DCIS), Barrett’s esophagus, small thyroid tumors, and early prostate.
• No, We Can’t Say Whether Cancer Is Mostly Bad Luck (Ed Yong, The Atlantic, 3-28-17) How some media outlets magnified the problems with a controversial new paper. Headlines that suggest bad luck plays a part in whether you get cancer reveal less about why people do or don’t get cancers, and more about how hard it is to talk or think about these diseases.
**AfterShock: What to Do When the Doctor Gives You--Or Someone You Love--a Devastating Diagnosis by Jessie Gruman, whose helpful 44-minute talk about facing a devastating diagnosis (for cancer as well as other diseases) is worth watching--both for patients diagnosed and those around them (for example, if X tells you about a serious diagnosis, don't share that information without their permission).
• How Washington’s favorite cancer fighter helps himself (Darius Tahir, Politico Investigation, 4-9-17) Patrick Soon-Shiong is a philanthropist and a businessman. But a prime target of his philanthropy is his businesses. "Soon-Shiong believes he has found a pathway to turning the disease into a manageable condition, commanding his own multibillion-dollar network of for-profit and nonprofit groups that combines health information technology with genomic testing....A POLITICO investigation found that the majority of its expenditures flow to businesses and not-for-profits controlled by Soon-Shiong himself, and the majority of its grants have gone to entities that have business deals with his for-profit firms."
• Cancer Fight: Unclear Tests for New Drug by Gina Kolata (NYTimes 4-19-10), on the unreliability of certain cancer tests and the expensive, dangerous consequences of targeted therapies that depend on them.
• The Cancer Letter (inside information on cancer research and drug development). And here's a story about the National Cancer Institute's brash foray into the news business, to blunt the Cancer Letter's coverage of the NCI (Paul Goldberg, ScienceWriters magazine, 5-4-13).
• Cancer & Sugar - Strategy for Selective Starvation of Cancer (Mark Sircus, GreenMedInfo.com, 2-27-13)
AVOIDING OVERTREATMENT
• So Much Care It Hurts: Unneeded Scans, Therapy, Surgery Only Add To Patients’ Ills (Liz Szabo, Kaiser Health News, 10-23-17) Research in the New England Journal of Medicine in 2010 showed "that a condensed, three-week radiation course works just as well as the longer regimen....Yet many patients still aren’t told about their choices....only 48 percent of eligible breast cancer patients today get the shorter regimen, in spite of the additional costs and inconvenience of the longer type....
A growing number of patients and doctors are concerned about overtreatment, which is rampant across the health care system, argues Dr. Martin Makary, a professor of surgery and health policy at the Johns Hopkins University School of Medicine in Baltimore. From duplicate blood tests to unnecessary knee replacements, millions of patients are being bombarded with screenings, scans and treatments that offer little or no benefit, Makary said....Those procedures aren’t only expensive. Some clearly harm patients.
Overzealous screening for cancers of the thyroid, prostate, breast and skin, for example, leads many older people to undergo treatments unlikely to extend their lives, but which can cause needless pain and suffering....The high rate of overtreatment in breast cancer is “shocking and appalling and unacceptable,” said Karuna Jaggar, executive director of Breast Cancer Action, a San Francisco-based advocacy group. “It’s an example of how our profit-driven health system puts financial interests above women’s health and well-being.” ... "In 2012, the American Society for Clinical Oncology, the leading medical group for cancer specialists, explicitly told doctors not to order the tumor marker tests and advanced imaging — such as CT, PET and bone scans — for survivors of early-stage breast cancer. Yet these tests remain common....Beyond wasted time and worry for women, these scans also expose them to unnecessary radiation, a known carcinogen, Lyman said. A National Cancer Institute study estimated that 2 percent of all cancers in the United States could be caused by medical imaging.
...Kolb asked her doctor about a 2008 Canadian study, which was later published in the influential New England Journal of Medicine, showing that three weeks of radiation was safe. He agreed to try it....Even the short course left her with painful skin burns, blisters, swelling, respiratory infections and fatigue. She fears these symptoms would have been twice as bad if she had been subjected to the full seven weeks."
"The Choosing Wisely campaign, launched in 2012 by the American Board of Internal Medicine (ABIM) Foundation, aims to raise awareness about overtreatment. The effort, which has been joined by 80 medical societies, has listed 500 practices to avoid. It advises doctors not to provide more radiation for cancer than necessary, and to avoid screening for tumor markers after early breast cancer."
• Hard decisions about cancer (PDF, Choosing Wisely, ABIM Foundation, American Board of Internal Medicine, Sept. 2012) 5 tests and treatments to ask questions about (along with the questions to ask):
1) Cancer treatments at the end of life (when palliative or hospice care is a better option). "Many patients who receive palliative or hospice care live at least as long as those who don't, and their quality of life is better, too."
2) Imaging tests for early prostate cancer
3) Imaging tests (beyond mammograms) for early breast cancer
4) Follow-up tumor marker tests and advanced-imaging test for people treated for breast cancer
5) White blood cell growth factors for preventing infection.
• Disrupting Cancer (60 Minutes, Sanjay Gupta, 12-7-14) Billionaire Dr. Patrick Soon-Shiong is turning heads with unconventional ways of treating the deadly disease....Cancer is actually the inability of the cells to die. The key is figuring out the genetic mutation or glitch that prevents cells from dying a natural death. Soon-Shiong's hope is to provide patients with the precise genetic mutations that fuel their cancer regardless of where tumors are found in the body....The concept of doing away with labeling the disease by where it's found is not unique to Soon-Shiong, but it is a tectonic shift in the fight against cancer, the notion of classifying a cancer by its mutation." (Watch the program online or read the transcript, or both.)
• Here Is What '60 Minutes' Didn't Tell You About The Billionaire Who Is Trying To Disrupt Cancer Care (Matthew Herper, Forbes, 12-7-14) "Something the story doesn’t emphasize strongly enough: of all the amazing areas of cancer therapy that Soon-Shiong is working in, he is not working in the immune-derived cancer treatments that are currently showing amazing results." "He really does have some amazing computer scientists on his payroll. And he really can move genetic data around very, very fast. Those are real advantages, and it could be enough for him to build an important company around. But we should be careful with myth-making. None of this will happen overnight."
• Forty Years' War (Gina Kolata, Gardiner Harris, Andrew Pollack, Lawrence K. Altman, Natasha Singer) A New York Times series of articles that examine the struggle to defeat cancer
• Finding and Understanding Cancer Statistics (National Cancer Institute)
• Forty Years' War (Gina Kolata, Gardiner Harris, Andrew Pollack, Lawrence K. Altman, Natasha Singer) A New York Times series, 2009, of articles that examine the struggle to defeat cancer. For example, Cancer Center Ads Use Emotion More Than Fact (Natasha Singer, 12-18-09)
• Researching cancer (where to look)
• Screening and testing for cancer
• General information and approaches to treatment
• Avoiding overtreatment or possibly dangerous and unnecessary treatment
• Chemotherapy
• Surgery for cancer
• Targeted therapy
• Radiation therapy
• Immunotherapy (including CAR T-cell therapy)
• Stem cell therapy (including unapproved and quack therapies)
• Complementary & alternative cancer therapy
• Checking out clinical trials
• Specific cancers (and see below)
• Food that fights cancer
• Other approaches to preventing cancer
• Managing cancer pain
• Tools for coping
• Cancer survivor stories
• Cancer blogs and personal stories about cancer
• Books about cancer
• Memoirs about struggling with cancer
• Cancer support groups
• Support from friends and family
• Comforting a person with cancer
• The cost of cancer -- and finding financial support
• Travel support
• Make-a-Wish and other wish fulfillment organizations
• Cancer research, advocacy, and educational organizations
• Hospitals and cancer centers
Cancer by the numbers: cancer statistics (e.g., survival rates, incidence)
Understanding the debate on health care reform and health policy
Types of cancer, sites listing and describing
Bone cancer, sites listing and describing
Brain tumors and brain cancer
Breast cancer
(includes section on Breast implants)
Colon and colorectal cancer
Head and neck and throat cancer
Kidney cancer
Leukemia, lymphoma, myeloma, and other blood cancers
Lung cancer
Melanoma and other skin cancers
Mesothelioma
Multiple myeloma
Ovarian, cervical, and other gynecological cancers
Pancreatic cancer
Prostate cancer
Rarer types of cancer
Sarcomas
Thyroid cancer
Cancer once meant a death sentence. Increasingly, as medical scientists find new ways to combat it (or them--there are many types of cancer), it is becoming a chronic (and a sneaky) disease. Prevention is the best approach to fighting cancer, but when the disease strikes it helps to find knowledgeable support and to know the facts about how to fight and cope with it. Let me know of links to useful resources that are not yet listed here.
• Poison lurking in schools (PCBs) (Center for Investigative Reporting, Reveal, National Public Radio, 6-11-16). Across the country, tens of thousands of public schools could be contaminated with toxic polychlorinated biphenyls – compounds more commonly known as PCBs, which were used widely in building materials such as window caulk. PCBs have been linked to everything from skin conditions to cancer. science is showing that PCBs are more dangerous than we thought, but the EPA is not doing enough to protect children from exposures (from PCBs in caulking in school buildings built to educate the baby boomers). EPA has a history of making decisions favorable to industry. '
• Chemical Safety Bill Could Help Protect Monsanto Against Legal Claims (Eric Lipton, NY Times, 2-29-16) The giant biotechnology company Monsanto last year received a legislative gift from the House of Representatives, a one-paragraph addition to a sweeping chemical safety bill that could help shield it from legal liability for a toxic chemical only it made. The provision would benefit the only manufacturer in the United States of now-banned polychlorinated biphenyls, chemicals known as PCBs, a mainstay of Monsanto sales for decades.
Herbicides, pesticides and cancer
• Weed Killer, Long Cleared, Is Doubted (Andrew Pollack, NY Times, 3-27-15) Introduced in the 1970s, glyphosate (the active ingredient in Round-Up) is the most widely used herbicide in the world. Is it "probably carcogenic" to humans or not? Pollack looks at the evidence.
• Common Herbicide Used In Monsanto’s Roundup Deemed ‘Probably Carcinogenic’ (Britt E. Erickson, Chemical & Engineering News, 3-30-15). World Health Organization agency reaches controversial conclusion about glyphosate
• Widely used herbicide linked to cancer (Daniel Cressey, Nature, 3-24-15) As the World Health Organization's research arm declares glyphosate a probable carcinogen, Nature looks at the evidence.
• War against cancer has more than one target (David Brown, Washington Post 4-27-10)
Researching cancer (where to look for advice and information)
• What is cancer? (National Cancer Institute, Defining cancer)
• Understanding Cancer (National Cancer Institute)
• NCI Dictionary of Cancer Terms (National Cancer Institute). NCI is part of the National Institutes of Health (NIH), a federal U.S. organization that funds cancer research and training.
• NCI Fact Sheets
• American Cancer Society has a chat line and a 24-hour help line (1-800-227-2345 or 1-800-ACS-2345)
• Cancer.Net (American Society of Clinical Oncology), oncologist-approved site providing patient-centered information about various types of cancer.
• OncoLink
• PubMed, a database maintained by the U.S. National Library of Medicine and the National Institutes of Health, contains more than 22 million citations from the biomedical literature. This is where to look for studies that are changing medical practice. Type in keyword to pull up citations and possibly abstracts and links to articles. A major research tool.
• Cancer Guide on How to access Medline and other medical databases (CancerGuide.org)
• How to Research the Medical Literature About Cancer (how to use databases and online resources). See also Use Search Operators To Find Stories, Sources and Documents Online (Meranda Watling, 10,000 Words--where journalism and technology meet, 4-19-11)
• A to Z List of Cancer Drugs (more than 200 cancer drug information summaries from National Cancer Institute)
• NCI Drug Dictionary
• Chemocare. Scott Hamilton's chemotherapy site offers general treatment information (drug info, side effects, wellness resources) for cancer patients.
• ClinicalTrials.gov (National Institutes of Health), a registry and results database of publicly and privately supported clinical studies of [cancer and other diseases in] human participants conducted around the world. Enter search term in the database to see related trials, criteria you need to meet to be included in a study, how and where the study is being conducted, and how to get in touch with the researchers.
• Tips for analyzing studies, medical evidence and health care claims (HealthNewsReview). Tips for understanding studies, aimed at medical journalists, but helpful for all of us.
• NCI-supported cancer-specific clinical trials. This database is limited to cancer, so it might be easier to use than ClinicalTrials.gov . Search by city, state, and type of cancer.
• National Comprehensive Cancer Network (NCCN) , a nonprofit alliance of cancer centers that develops evidence-based guidelines for medical practice. See especially NCCN Guidelines for Patients (and Caregivers)
• American Institute for Cancer Research (AICR) focuses on ways to prevent cancer, through the right weight, diet, and amount and kind of physical activity and exercise. The recipes in AICR's cookbook, The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life, are delicious (which can't be said of most healthy-eating cookbooks). I often give this book to families dealing with cancer who wonder what they can do to help.
• National Center for Complementary and Integrative Health, or NCCIH (formerly "and Alternative Medicine"--alternative to medication, surgery, and other traditional medical approaches). For example, "A review of evidence from clinical trials shows that a variety of complementary health approaches—including acupuncture, yoga, tai chi, massage therapy, and relaxation techniques—hold promise for helping to manage pain."
• Understanding Cancer Pain (includes Caregiver's Guide, Cancer Pain Treatments)
• PDQ Cancer Information Summaries, Editorial Boards, and Levels of Evidence (National Cancer Institute)
• Other ways to get PDQ information (NCI)
• Cochrane Reviews: Breast Cancer (evidence based information)
• Cochrane reviews of breast cancer options (reviews of the evidence, to facilitate informed decisions)
• Cure (Cancer updates, research, and education)
• Searching for cancer centers (American College of Surgeons)
• Women's Cancer Network. Comprehensive information about reproductive cancers, gynecologic oncologists, survivors’ courses, clinical trials and Foundation for Women's Cancer publications. (Reproductive cancers include breast, cervical, endometrial, germ and stromal cell, GTD, ovarian, primary peritoneal, uterine, vaginal, and vulvar cancer).
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• State Cancer Profiles
• Grand Rounds at Dartmouth-Hitchcock Medical Center (talks and slide shows available free online)
• How to get basic information about your cancer online. You may find other relevant links under Science and Medical Writing (links on Pat's Writers and Editors website)
• Push Hard for the Answers You Require (Denise Grady, NY Times, 7-29-07)
Specific types of cancer
subsections on
Bone cancer
Brain tumors and brain cancers
Breast cancer
Colon and colorectal cancer
Head and neck and throat cancer
Kidney cancer
Leukemia, lymphoma, and other blood cancers
Lung cancer
Melanoma and other skin cancers
Mesothelioma
Multiple myeloma
Ovarian, cervical, and other gynecological cancers
Pancreatic cancer
Prostate cancer
Rarer types of cancer
Thyroid cancer
Cancer syndromes
Ataxia-telangiectasia (A-T)Birt-Hogg-Dubé syndrome (BHD)
Carney Complex (CNC)
Cowden Syndrome
Familial GIST Syndrome
Hereditary Breast and Ovarian Cancer Syndrome (HBOC)
Li-Fraumeni Syndrome (LFS)
Lynch Syndrome
Types of cancer
• Types with links on this website
• Types of Cancer (National Cancer Institute). Here's an A to Z List of Cancers (alphabetical links). See also Type of cancer by body location or system
• Toolbox (CURE's superb long list of links to general and specific cancer sites)
• Learn about cancer (American Cancer Society). Scroll down and click on a specific cancer type.
• Childhood Cancers (American Cancer Society)
• Patient communities--a starter list (e-Patient Dave, toward a new science of patient engagement)
• Types of Cancer (Cancer.Net, American Society of Clinical Oncology, ASCO)
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• Back to Information about specific cancers
Bone Cancer
• Bone Cancer (Cancer.net, American Society of Clinical Oncology, or ASCO)
• Bone Cancer Fact Sheet (National Cancer Institute, or NCI)
• I Was All Set to Become the Most Popular Guy in the Cancer Ward. Then I Met My Nemesis: Ben. (Luke Mullins, Washingtonian, 12-11-16) Ewing sarcoma "often migrates to the lungs, where it can become fatal. The good news: We’d caught the cancer before it spread." "But my diagnosis came with bad news, too: Ewing sarcoma has a nasty history of returning even after its tumors have been excised. I was looking at a year of chemo."
• Ewing Sarcoma Treatment (PDQ) (National Cancer Institute) Ewing sarcoma is a rare type of tumor that forms in bone or soft tissue. Signs and symptoms include swelling and pain near the tumor.
• Nonsurgical Treatments for Metastatic Cancer in Bones (Society for Interventional Radiology) Bones are the third most common location where cancer cells spread and metastasize. Bone metastases occur when cancer cells gain access to the blood stream, reach the bone marrow, begin to multiply and then grow new blood vessels to obtain oxygen and food--which in turn causes the cancer cells to grow more and spread.
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• Back to Information about specific cancers
Brain tumors, brain cancers, and aneurysms
(No, aneurysms are not tumors or cancers, but stories about them often
help brain tumor patients understand what happens when things go bump in the brain)
• American Brain Tumor Association (ABTA), an invaluable source of basic information about all kinds of brain tumors. See, for example, Brain Tumor Treatment & Care, where you can download a PDF of About Brain Tumors: A Primer for Patients and Caregivers, in English or Spanish.
• Brain Tumor Primer. A comprehensive introduction to brain tumors (9th edition), downloadable free as a PDF. American Brain Tumor Association. (made possible by a generous donation from Genentech, the Byrne Foundation, and the Butler Family Foundation)
• Children's Brain Tumor Association (CBTA)
• National Brain Tumor Society (effecting change in the system at all levels)
• Pediatric Brain Tumor Foundation Working to eliminate the challenges of childhood brain tumors
• Patient information: Conditions and Treatments (American Association of Neurological Surgeons, AANS) Lists and describes the various types of brain tumors and various approaches to treatment.
• Brain and Spinal Cord Tumors in Children
• Brain and Spinal Cord Tumors in Adults (American Cancer Society)
• Survival rates for selected adult brain and spinal cord tumors (American Cancer Society)
• Living with a Brain Tumor: Dr. Peter Black's Guide to Taking Control of Your Treatment, by Peter Black with Sharon Cloud Hogan
• What Are Common Brain Tumor Symptoms? (Dana Farber Cancer Institute, 5-15-13)
• Glioblastomas (GBM). (American Brain Tumor Association (ABTA). GBMs "are tumors that arise from astrocytes—the star-shaped cells that make up the “glue-like,” or supportive tissue of the brain. These tumors are usually highly malignant (cancerous) because the cells reproduce quickly and they are supported by a large network of blood vessels." See recorded webinar on this tumor.
• Doctors use precision medicine to show melanoma drugs can shrink rare brain tumor by 90% (Bree Iskandar,STAT, 7-13-23) "By going down to the molecular level, doctors have uncovered a way to treat tumors caused by a rare brain cancer using medicines that already exist. Two cancer drugs — currently approved for the treatment of melanoma — were able to treat a rare type of brain cancer called PCP, or papillary craniopharyngioma, researchers reported in a study published in the New England Journal of Medicine." Sixteen "patients with PCP who had not received any prior radiation therapy were given cancer drugs that target the proteins BRAF and MEK, which are both involved in cell growth. The drugs — vemurafenib and cobimetinib, both marketed by Genentech — turned out to be incredibly effective, and tumors shrank by over 90% on average."
• Glioblastoma and me (Jeffrey Weiss, Dallas News)
• ‘Here be dragons’: Long-term survivors like me can help map the boundaries of cancer (Adam Hayden, Opinion, STAT News, 8-2-21) Glioblastoma is an aggressive brain cancer with a median survival time of just 15 to 16 months. "Surviving glioblastoma for five years is a rare gift that few families are given....To learn from long-term survivors like me, the U.S. needs to build a connected cancer infrastructure. Patient registries and efforts like the National Cancer Institute’s Exceptional Responders initiative are important steps to potentially reveal parts of the map that are hitherto unseen, but more can be done."
• John McCain has died. For brain cancers like his (glioblastoma), ‘research is our only hope’ (Sharon Begley, STAT, 8-25-18) “Glioblastoma is one of the most complex, drug-resistant, and adaptive cancers there is,” said David Arons, CEO of the National Brain Tumor Society. “There is no early detection and no prevention. Research is our only hope.” While there is no disagreement that research is the answer, experts are deeply divided about what direction the research should take. An overview of treatments.
• Liz Salmi's advance directive. An unusually thoughtful document from a woman who turned her brain cancer (diagnosed in 2008) into a generous research project (The Liz Army), sharing what she learned along the way. See Cancer survivor-turned-researcher advocates for patient access to medical notes (Healio, 3-25-21), and What I did After a Brain Cancer Diagnosis (Living Adaptive), an interview. "My research areas of interest include: the impact of transparency on patient-clinician communication ("open notes"); patient perspectives in malignant brain tumors (brain cancer); and stakeholder engagement in research."
• Glioblastoma and me (Jeffrey Weiss, Dallas News) Here, "Going out like fireworks: A reporter investigates his own illness--his brain cancer." A first-person account of being puzzled by certain symptoms, learning about his tumor, having surgery, learning about his chances. "It's a bad illness. The malignant cells reproduce quickly. Without treatment, it’s fatal in about three months. With successful surgery, radiation and chemotherapy treatment, the most precise median survival is 14.6 months. That means half the people with the illness die sooner and half live longer. But longer life is pretty limited. " He writes about lessons he has learned about potential treatment choices, side effects, etc. "Good and fast research will lead to effective questions. Getting answers from doctors will help you understand what’s happening and may nudge the doctors toward their most effective work."
• FDA Accelerates Development of Polio Virus Treatment for Brain Cancer (Silas Inman, Cure, 5-17-16) The FDA granted the recombinant oncolytic poliovirus PVS-RIPO a breakthrough therapy designation as a potential treatment for patients with recurrent glioblastoma multiforme (GBM), citing evidence from an ongoing phase 1 study that is exploring overall survival rate in patients with grade 4 malignant glioma, according to a statement by the developer of the immunotherapy, Duke Medicine.
• Tips for living and coping (American Brain Tumor Association)
• Interview with John J. Fish, brain cancer survivor (Tom Mayer, MountainTimes.com, 10-20-16). Fish is author of All My Might: How an Award-Winning Journalist Thrives After Brain Cancer
• What's the Difference Between Benign and Malignant Brain Tumors? (Web MD). Scroll down for answer: Benign brain tumors are noncancerous. Malignant primary brain tumors are cancers that originate in the brain, typically grow faster than benign tumors, and aggressively invade surrounding tissue. Although brain cancer rarely spreads to other organs, it will spread to other parts of the brain and central nervous system.
• Brain cancer replaces leukemia as the leading cause of cancer deaths in kids (Laurie McGinley, Health, Washington Post, 9-16-16) In 1999, almost a third of cancer deaths among patients aged 1 to 19 were attributable to leukemia while about a quarter were caused by brain cancer. By 2014, those percentages were reversed, according to a report published Friday by the National Center for Health Statistics. Lead author Sally Curtin said the change reflected a reduction in deaths from leukemia, rather than an increase in deaths from brain cancer. Brain cancers are generally very hard to treat, "partly because surgeons have to be careful not to damage healthy tissue during operations and partly because of the blood-brain barrier, which prevents some drugs from getting into the brain."
• Magnetic Resonance Imaging (MRI) (National MS Society, but also largely applicable to MRIs for brain tumors--in particular section on Possible safety concerns with gadolinium contrast agents
• Acoustic Neuroma three part personal narrative of science writer Erin Podolak's experience with an acoustic neuroma (aka vestibular schwannoma): 1) Diagnosis (4-26-14), 2) Surgery (4-27-14), and 3) Aftermath (4-28-14)
• Anatomy of Error (Joshua Rothman, New Yorker, 5-18-15) London neurosurgeon Henry Marsh remembers his mistakes. Unlike the rest of the body, the brain and the spinal cord rarely heal. This gives you a good sense of what it's like from the neurosurgeon's viewpoint. (Scary.) Henry Marsh is the author of Do No Harm: Stories of Life, Death, and Brain Surgery
• Brain Tumor Guide For The Newly Diagnosed by Al Musella
• Brain Tumor Locations and Symptoms (Cedars Sinai)
• Types of brain tumors and World Health Organization grades of tumor (patient info, American Association of Neurological Surgeons
• Brain tumors, explanations of treatments (Brainlab.org, a privately held organization that develop medical software and technologies)
• Interview with John J. Fish, brain cancer survivor (Tom Mayer, MountainTimes.com, 10-20-16). Fish is author of All My Might: How an Award-Winning Journalist Thrives After Brain Cancer
• Glioblastoma and me. Going out like fireworks: A reporter investigates his own illness — brain cancer. (Jeffrey Weiss, Dallas News, 2-22-17) He was forgetting words and finding concentration difficult, so he went to his doctor. CT and MRI scans revealed an egg-size growth in his brain, 95% of which was surgically removed. "Most people with my illness — glioblastoma — live less than a year and a half." A good explanation and personal account, with practical advice and a survey of treatment options.
• Depression and possible dementia masked the real problem (Sandra G. Boodman, Medical Mysteries, Wash Post, 12-23-13)
• I have a malignant brain tumor. But it’s not really on my mind. (Whitney Archer, Wash Post, 9-20-15) Despite the cancerous tumor, called an astrocytoma, in her brain, partly removed through surgery, she is living as much in life as in the shadow of death. Three times a year she goes to the NIH in Bethesda for MRIs.
• The Brain Tumor Is Benign, but Threats Remain (Emily Dwass, Well, NY Times, 4-27-15) In the frightening world of brain tumors, “benign” is a good word to hear. But even a nonmalignant tumor can be dangerous — especially if, as in my case, it goes undetected, becoming a stealth invader.
• Whole Brain Atlas Scans of the brain for normal brain, a patient with cerebrovascular disease (stroke or "brain attack"), with neoplastic disease (brain tumor), with degenerative disease (Alzheimer's, Huntington's, and Picks disease), with inflammatory or infectious disease (multiple sclerosis, Creutzfeld-Jakob disease, Lyme encephalopathy and more).
• Be Lucky by Kenneth Zeitler (Pulse, 11-29-13) shares the story of his brain tumor and the lessons others may draw from it.
• Curveball: When Life Throws You a Brain Tumor by Liz Holzemer (in her case, a baseball-sized meningioma — and remember, a brain tumor is different from brain cancer)
• Waiting for the Monsoon, Discovering a Brain Tumor Instead (Rod Nordland, India Dispatch, NY Times, 8-31-19) "That is really the last thing I remember with certainty. I only learned later that I had, somehow, made my way from the gardens to New Delhi’s Golf Course Colony, several miles away. This is where a malignant brain tumor, as yet undiagnosed, struck me down and left me thrashing on the ground. A Good Samaritan, I would be told, had seen me reeling in circles, with arms upraised, as if dancing, or praying, then watched me collapse in an epileptic seizure....From 3 to 6 percent of glioblastoma patients are cured; one of them will bear my name."
• 100 Questions & Answers About Brain Tumors by Virginia Stark-Vance and Mary Louise Dubay
• A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (Steve Fishman's book about about surviving an aneurysm explains the brain in a way that may also interest brain tumor patients). Similarly you may be interested in Jimmy Breslin's book, I Want to Thank My Brain for Remembering Me (about surviving his aneurysm)
• Suddenly, my life changed . Judy Steed developed an aneurysm behind her right eye, which made her see what aging really looks like. (Toronto Star print story and video, 11-8-08)
• Tips for living and coping (American Brain Tumor Association)
• Stir: My Broken Brain and the Meals That Brought Me Home by Jessica Fechter. "“Pairing food with the nightmare of surviving a brain aneurysm shouldn't work — but under Jessica Fechtor's wise and wonderful narration, the pairing not only works, it shines.” ~Susannah Cahalan, author of Brain on Fire
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• Back to Information about specific cancers
Breast cancer
• Why Not Me? (Katie Couric) See Katie Couric's Breast Cancer (Michele R. Berman, MD, MedPage Today, 10-6-22) The popular media personality is on a mission to raise awareness around dense breasts. Katie Couric on telling daughters she has breast cancer: ‘Hard to deliver that news’ (video, Today)
• What is breast cancer? (breastcancer.org)
• Breast Cancer (MedlinePlus.gov's site is a gateway to information on PubMed and ClinicalTrials.gov)
• Breast cancer (National Cancer Institute)
• Association of Cancer Online Resources (ACOR). Click on Breast Cancer to find online communities focused on various forms of breast cancer.
• Four questions to ask before participating in or donating to a breast cancer walk. If you're going to support a cancer group, writes Barbara Ehrenreich, a cancer survivor and a scientist, support Breast Cancer Action (working to address and end the breast cancer epidemic at the intersection of breast cancer, the environment, social justice, and feminism) Ehrenreich writes: 'What sustained me through the “treatments” is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm.'
• CancerCareCancerCare. Counseling. Support Groups. Education. Financial Assistance.
• Breast Cancer (Oncolink)
• Breast cancer signs & symptoms (Web MD)
• Stages of breast cancer (breastcancer.org)
• Many With Breast Cancer 'Systematically Left Behind,' Report Says (Mike Bassett, MedPage Today, 4-15-24) Lancet Commission issues recommendations to address inequities in global breast cancer care.
• How much does a mammogram cost? The takeaway on billing, from our WNYC partnership (Jeanne Pinder, Clear Health Costs, 7-1-13) How much does a mammogram cost? Well, that depends. It could be $0, and it could be $1,100 and up. Always ask up front what the price will be, and what you will be asked to pay, and for what service.
• Flat: Reclaiming My Body from Breast Cancer by Catherine Guthrie, See More Breast Cancer Survivors Opting to 'Go Flat' After Mastectomy (Cara Murez, HealthDay, 1-14-21) "When journalist Catherine Guthrie learned that she would need to have a mastectomy following a breast cancer diagnosis, she was shocked by what seemed like a cursory explanation from her surgeon about what would happen next. That included removing both of her breasts, adding implants, and moving a muscle from her back to her chest to make the results look more natural. It didn't feel right to her. She went home, thought about it and decided to "go flat."
"I feel great about it. I love my body. I love the freedom I have in my body. I love that I have full mobility and strength in my body. I'm as flexible and strong now 10, 11 years later as I was then," said Guthrie, who already had back issues and had been concerned about how the surgery would impact that.
• Many Breast Cancer Patients Can Safely Skip Chemo, Large Trial Confirms ( Elaine Schattner, Forbes, 6-3-18) "A large study confirms that many patients with early-stage breast cancer don’t need chemotherapy after surgery. The TAILORx trial evaluated a pathology test called OncotypeDx (Genomics Health), which predicts risk of recurrence, and found the test to be reliable....These results have the potential to reduce overtreatment of breast cancer—stopping patients’ unnecessary exposure to chemotherapy—in a large fraction of cases"
• Breast cancer treatments can raise risk of heart disease, American Heart Association warns (Laurie McGinley, WashPost, 2-1-18) The American Heart Association has warned that breast cancer treatments, including chemotherapy, can increase the risk of heart disease. Otis Brawley, chief medical officer of the American Cancer Society and a longtime critic of overtreating breast cancer, said the report is a reminder to oncologists that side effects of cancer treatments can do real harm to patients. "It isn't unusual, Brawley said, for a breast-cancer patient who underwent chemo years earlier to wake up one day with swollen ankles and shortness of breath, symptoms of congestive heart failure. Yet when such a patient ends up in the hospital, he said, doctors tend to look for signs of a heart attack or pulmonary embolism while overlooking breast cancer treatment as a possible culprit. That’s a problem because heart failure caused by a chemo drug like doxorubicin is treated differently than heart failure from a heart attack, he said." Small studies also have shown that a drug called dexrazoxane can reduce the risk of heart damage in patients getting high doses of doxorubicin for advanced breast cancer, it added.
• Years ago when my twin got breast cancer I took drastic action and am grateful I did (Ruth Selig, WashPost, 5-29-18) Her twin's breast cancer led Ruth to get genetic testing and undergo surgery. In a sense, her twin saved her life. "The BRCA genes (for BReast CAncer) were discovered in 1990, but it was several years more before scientists connected their mutations (BRCA1 and BRCA2) to cancer risk....For a twin with a BRCA mutation, the risk for breast and ovarian cancer is much higher. The study also showed that some cancers carry higher genetic risks than others, for example, skin melanoma, and the reproductive cancers (prostate, ovarian, breast and uterine)."
• DNA tests grow more vital in hereditary breast cancer treatments. They also raise unanswerable questions. (Sarah Elizabeth Richards, Washington Post, 3-13-20) 'In a new era of precision medicine, the role of genetics is becoming increasingly critical to determine who might benefit from such therapies that go after specific cancer-causing genetic mutations. A growing number of oncologists now order a DNA analysis of patients’ cancerous tumor tissue obtained through a biopsy to better understand how patients’ unique biology might drive their treatment. More doctors also are encouraging breast cancer patients to have their DNA sequenced through a simple blood test to reveal mutations that can be passed down from parent to child....“There are new drugs for people with these inherited mutations that could help them control their cancer,” says Allison Kurian, an oncologist at Stanford Cancer Center, referring to the recent approval of two targeted therapies known as PARP inhibitors for patients with metastatic breast cancer who have a mutation in the BRCA1 or BRCA2 genes.'
• Understanding Your Pathology Report (American Cancer Society). What do these mean? Hyperplasia, E-cadherin, atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH), microcalcifications or calcifications, and other terms.
• Understanding your operative and pathology reports (Nov. 2004 ask-the-expert online conference, breastcancer.org)
• Early detection, diagnosis, and staging (American Cancer Society)
• Breast Lumps: 8 Myths and Facts (Sheryl Kraft, WebMD, 9-10-13)
• Misdiagnosis of breast cancer (Right Diagnosis)
• A Rockville Mother's Battle with Breast Cancer (Joanne Meszoly, Bethesda Magazine, Sept./Oct. 2016) A biopsy confirmed that Frost had ILC, a type of cancer that begins in the milk-producing glands of the breast and is more difficult to see on a mammogram than ductal carcinoma. “With the more common ductal cancer, there’s frequently a more distinct mass detected through exam or mammogram,” says Frost’s oncologist, Dr. Joseph Haggerty, medical director of the Shady Grove Adventist Aquilino Cancer Center. “But with lobular, the cells percolate out. We call it ‘single filing,’ because they branch out or spread like tendrils. That’s why lobular is so difficult to diagnose early, even with ultrasound and MRI.” Eventually, a mass does form, as the technician detected, but it feels more like a thickening of breast tissue and isn’t as firm as a ductal tumor.
• BRCA1 and BRCA2: Cancer Risk and Genetic Testing (National Cancer Institute BRCA fact sheet)
• A Systematic Assessment of Benefits and Risks to Guide Breast Cancer Screening Decisions (Lydia E. Pace et al, Journal of American Medical Association, or JAMA, 2-2-14) Breast cancer is the second leading cause of cancer deaths among US women. Mammography screening may be associated with reduced breast cancer mortality but can also cause harm. Guidelines recommend individualizing screening decisions, particularly for younger women. But see: Panel Reasserts Mammogram Advice That Triggered Breast Cancer Debate (Denise Grady, NY Times, 1-11-16)
• Bad Luck Or Bad Genes? Dealing With BRCA And 'A Cancer In The Family' (NPR, 3-4-16) Oncologist Theodora Ross (author of A Cancer in the Family: Take Control of Your Genetic Inheritance) discusses the hereditary nature of cancer and her own predisposition to breast and ovarian cancer, which led her to have a double mastectomy and to have her ovaries removed. Read transcript or listen online.
• Hereditary Breast and Ovarian Cancer (Cancer.net fact sheet)
• A breast cancer study in mice gets big headlines, setting up potential for patient ‘disaster,’ experts say (Joy Victory, HealthNewsReview.org, 4-16-18) "Researchers theorize that, based on what they studied in mice, post-surgery wound inflammation may trigger cancer growth in cancer patients whose tumors are surgically removed. They also theorized that anti-inflammatory drugs like aspirin might be useful in lowering the tumor growth, based on how the mice responded. Despite her sources making it clear that this mouse study isn’t applicable to people," Dr. Jennifer Ashton put together a segment for a national morning audience, Good Morning America, about the research, waiting till halfway through the segment to say the results were "not ready for primetime."
• Surgery to Reduce the Risk of Breast Cancer (National Cancer Institute fact sheet about breast-cancer-reducing surgery)
• Faces of Breast Cancer (Stories, Well blog, NY Times). Grouped asStories and as Conversations (e.g., How did cancer affect your career? What's it like being a mother with cancer? How did this change your relationship to romance? Did breast cancer change how you felt about your body? Were there any lessons about friendship that emerged?) Full of practical and psychological insights.
Ductal carcinoma in situ (DCIS)
• Doubt Is Raised Over Value of Surgery for Breast Lesion at Earliest Stage (Gina Kolata, Health, NY Times, 8-20-15) Almost all women given a diagnosis of ductal carcinoma in situ (DCIS), considered a possible precursor to breast cancer, have a lumpectomy or mastectomy, but data show they may not benefit. "Dr. Otis W. Brawley, chief medical officer at the American Cancer Society, said he was not ready to abandon treatment until a large clinical trial is done that randomly assigns women to receive mastectomies, lumpectomies or no treatment for D.C.I.S., and that shows treatment is unnecessary for most patients. But Dr. Brawley, who was not involved in the study, also said he had no doubt that treatment had been excessive. 'In medicine, we have a tendency to get too enthusiastic about a technique and overuse it,' Dr. Brawley said. 'This has happened with the treatment of D.C.I.S.' "
• Trends in Treatment Patterns and Outcomes for Ductal Carcinoma in Situ (Mathias Worni et al., Journal of the National Cancer Institute, 8-25-15) Abstract, which shows conclusions.
• The DCIS Dilemma (Charlotte Huff, Cure Today, 9-25-14) Breast surgeon Laura Esserman 'has spoken repeatedly about her overtreatment concerns. “I do think there is a large majority of DCIS [cases] that are detected today that are low or no risk,” she says. “One size does not fit all. And DCIS is not one condition.” Read this to get a sense of the risks of treatment for DCIS. "One difficulty in advising patients, [breast surgeon Shelley] Hwang says, is that relatively little is understood about the natural course of DCIS and how frequently it progresses to invasive cancer if left alone and closely monitored. “As long as we’ve known about DCIS, we’ve never not treated it,” she says, adding it’s still unclear what would happen if it was routinely left untreated."
• Ductal Carcinoma In Situ (Andrea L. Merrill, M.D, et al., NEJM, 1-28-16) Case Vignette: A 54-year-old Woman with Ductal Carcinoma In Situ. Two doctors give opinions about what to do.
• Radiotherapy for DCIS (Macmillan Cancer Support, UK)
• DCIS Predicts Risk of Local Recurrence (Pam Harrison, Medpage Today, 7-16-15) Intermediate risk score may be best predictor
• In Breast Cancer, There Is a Single Agenda: Stay Alive (Aliyah Baruchin, NY Times, 10-31-06) "This is a disease for which there are options. In that situation, information becomes the only game in town."
• Breast Cancer Treatment and D.C.I.S.: Readers React (Lela Moore, NY Times, 8-21-05). An article on the results of a study indicating that aggressive surgical treatment of a possible precursor to breast cancer may be unnecessary prompted a wide range of responses from readers, among them anger, sadness and relief.
• Diana M. Raab's book Healing With Words: A Writer's Cancer Journey. Raab's story of surviving ductal carcinoma in situ (DCIS)--cancer of the mammary glands, detectable only through a mammogram).
• Breast Cancer Treatment and D.C.I.S.: Answers to Questions About New Findings (Gina Kolata, Health, NY Times, 8-20-15)
• Decades of Data Fail to Resolve Debate on Treating Tiny Breast Lesions (Gina Kolata, Health, NY Times, 8-21-15) If treating D.C.I.S. was supposed to fend off invasive breast cancer, the incidence of invasive breast cancer should have plummeted once D.C.I.S. was being found and treated, the experts said." But "though tens of thousands of cases of D.C.I.S. were being diagnosed and aggressively treated each year, there seemed to be no substantial impact on the incidence of invasive breast cancers found annually in the general population." "That has intensified questions about what D.C.I.S. really is — cancer, precancer, a risk factor for cancer?"
• Understanding Your Pathology Report: Ductal Carcinoma In-Situ (American Cancer Society). This is one example; you can find similar pages for various types of cancer, in terms of Understanding Your Pathology Report, Understanding Your Diagnosis,
Treatments and Side Effects,
Finding and Paying for Treatment, and other aspects of managing your type of cancer.
• IDC Type: Mucinous Carcinoma of the Breast (BreastCancer.org) "Mucinous carcinoma of the breast — sometimes called colloid carcinoma — is a rare form of invasive ductal carcinoma (cancer that begins in the milk duct and spreads beyond it into nearby healthy tissue). In this type of cancer, the tumor is made up of abnormal cells that “float” in pools of mucin, a key ingredient in the slimy, slippery substance known as mucus....Even though mucinous carcinoma is an invasive breast cancer, it tends to be a less aggressive type that responds well to treatment. Mucinous carcinoma is less likely to spread to the lymph nodes than other types of breast cancer."
*** The Case Against Early Cancer Detection (Christie Aschwanden, Screenings, FiveThirtyEight, 11-24-24) How effective are mammograms and PSA screening? The idea behind screening is to find and treat early-stage cancers, preventing them from becoming deadly. When it works, the number of advanced cases and deaths go down as early diagnoses rise...that’s not always how it works. "What’s clear is that cancers fall into a few general behavior patterns, which Welch and others have compared to animals that must be kept in the barnyard to prevent a deadly rampage. Papillary tumors are like turtles — they move very slowly and never pose an escape risk. They don’t need screening, because they will never cause trouble. Then there are rabbits, which are eager to hop away to other parts of the body, but can be confined if they’re found and fenced. These are the cancers that can be helped by early detection and treatment. Birds, on the other hand, are so flighty and quick that they can’t be confined. Screening makes no difference for bird cancers, because they’re so aggressive that they can’t be detected before they’ve begun their deadly course." "...the best screening can do is reign in the rabbits." "Right now, there’s no way to distinguish turtles from rabbits, but researchers are working to find genetic markers that doctors can use to determine a cancer’s potential to become invasive, which would let them avoid over-treating less aggressive cancers." Definitely worth reading the entire article.
Mammograms
• American Cancer Society, in a Shift, Recommends Fewer Mammograms (Denise Grady, NY Times, 10-20-15) The group says women should start having mammograms at 45 and continue yearly until 54; it previously recommended mammograms and clinical breast exams every year, starting at 40.
• Mammograms can help--and harm (H.Gilbert Welch, CNN, 11-20-13) Mammograms don't always save lives and can lead to unnecessary surgery, chemotherapy and/or radiation. "To understand why, you need to know how doctors now think about cancer: in terms of turtles, rabbits and birds. The goal is not to let any of the animals escape the barnyard pen to become deadly. But the turtles aren't going anywhere anyway. They are the indolent, nonlethal cancers. The rabbits are ready to hop out at any time. They are the potentially lethal cancers, cancers that might be stopped by early detection and treatment. Then there are the birds. Quite simply, they are already gone. They are the most aggressive cancers, the ones that have already spread by the time they are detectable, the ones that are beyond cure."
• A Million-Dollar Marketing Juggernaut Pushes 3D Mammograms (Liz Szabo, KHN, 10-22-19) A KHN investigation found that manufacturers, hospitals, doctors and some patient advocates have put their marketing muscle ― and millions of dollars ― behind 3D mammograms. The juggernaut has left many women feeling pressured to undergo screenings, which, according to the U.S. Preventive Services Task Force, haven’t been shown to be more effective than traditional mammograms.
• False Alarm Mammograms May Still Signal Higher Breast Cancer Risk (Patti Neighmond, Morning Edition, NPR, 12-4-15) Women who have an abnormal mammogram should stay vigilant for cancer for for the next decade, even when follow-up tests fail to detect cancer, a study released Wednesday finds. A radiographic marker could be a precursor to some subsequent cancer diagnosis. A false positive is a risk factor.
• Mammogram Math (John Allen Paulos, NY Times, 12-10-09) "it’s not easy to weigh the dangers of breast cancer against the cumulative effects of radiation from dozens of mammograms, the invasiveness of biopsies (some of them minor operations) and the aggressive and debilitating treatment of slow-growing tumors that would never prove fatal."...As we now know, the panel of scientists advised that routine screening for asymptomatic women in their 40s was not warranted and that mammograms for women 50 or over should be given biennially rather than annually.
• How a charity oversells mammography (Steven Woloshin and Lisa M. Schwartz, British Medical Journal, 8-2-12), and The false narratives of pink ribbon month, redux (Christie Aschwanden, The Last Word on Nothing, 10-2-12). Susan G. Komen for the Cure "isn’t wrong to encourage women to consider mammography," writes Aschwanden. "But they’re dead wrong to imply that 'the key to surviving breast cancer' is 'you' and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim." Early detection does NOT always save lives. Some cancers are "extremely aggressive from the start" and "by the time they’re detectable by any of our existing methods, they’ve already metastasized. These are the really awful, most deadly cancers, and screening mammograms*** will not stop them." Not all cancers can be screened for early detection, knowing only what we know now.
• Scientists Seek to Rein In Diagnoses of Cancer (Tara Parker-Pope, NY Times, 7-29-13) The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidental findings detected during medical scans that most likely would never cause a problem. The concern is that since doctors do not yet have a clear way to tell the difference between benign or slow-growing tumors and aggressive diseases with many of these conditions, they treat everything as if it might become aggressive. As a result, doctors are finding and "overtreating" scores of seemingly precancerous lesions and early-stage cancers — like ductal carcinoma in situ (DCIS), Barrett’s esophagus, small thyroid tumors, and early prostate.
• Surgeon Seeks to Help Women Navigate Breast Cancer Treatment (Terry Gross, Fresh Air, NPR, 9-22-15). Terry Gross interviews breast surgeon Elisa Port on whether cancer spreads from one breast to another (no), on deciding to remove the healthy breast, genetic testing for the BRCA mutation, and other common concerns. Port is the author of The New Generation Breast Cancer Book
• In Lumpectomy For Breast Cancer, Taking Out A Bit Extra Reduces O.R. Revisits (Elaine Schattner, Forbes, 6-9-15)
• Living well with breast cancer by choosing wisely: A conversation with Amy Berman (Harold Pollock interviews Berman, WashPost, 12-15-14) "Choosing Wisely is an initiative led by the American Board of Internal Medicine. It's brought together different provider organizations. Each of these organizations decides what is most valuable to them. They identify tests or procedures that might be unnecessary, potentially harmful, of lower value; so people can avoid care that isn't great and instead choose things that will give them better health outcomes and lower cost....I went to one provider who wanted to throw everything at the cancer--which sounds fine to most people except it was not going to get me better. They still would have been willing to do chemotherapy, mastectomy, radiation, more chemotherapy, throw everything at it. At the end of the day, they would have been ruining my quality of life. I would have gone through all of that if I would have gotten better later, but I wouldn't have." Here she talks about how she is using recommendations from the Choosing Wisely effort to manage the care of her spreading breast cancer.
• Adventures in Choosing Wisely (Amy Berman, HealthAGEnda 10-23-14) "I am four years into one of the most devastating diagnoses and I haven’t visited a single hospital. This means that my care is much lower cost than others in my situation. How is this possible? One answer is that my health care team and I choose wisely. "It’s astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost."
• Study Reveals How Some Breast Cancers Become Resistant to Targeted Drugs
• Many Breast Cancer Patients Get Unnecessary Radiation (Alice Park, Time, 12-10-14) According to a study reported in JAMA, about two thirds of breast cancer patients may be getting more radiation treatment than they really need.
• What Have We Learned About Partial Breast Radiation Therapy? (Fiona Wilmot, Breast Cancer Action, 1-9-15) Data support shortening the period of radiation after surgery.
• Aromatase inhibitors and breast cancer treatment (Susan G. Komen)
• Medicines to Reduce Breast Cancer Risk (American Cancer Society) Aromatase inhibitors are drugs that lower estrogen levels by stopping an enzyme in fat tissue (called aromatase) from changing other hormones into estrogen. ... Can aromatase inhibitors lower the risk of breast cancer? ... Unlike tamoxifen and raloxifene, aromatase inhibitors tend to speed up bone thinning, which can lead to osteoporosis. People with osteoporosis can break bones with little trauma. Aromatase inhibitors do not seem to increase the risk of serious blood clots or cancer of the uterus, like tamoxifen and raloxifene do. More research is needed.
• A Breast Oncologist, Diagnosed With the Disease (Terry Gross, Fresh Air, 12-14-10). Terry Gross interviews oncologist Marisa Weiss about the breast cancer gene, mammography, MRIs, on estrogen (""When you take pharmaceutical estrogens from the outside environment into your internal environment, inside your body, you're basically marinating your cells in a substance that's going to promote its growth so breast cells are very responsive to hormones as well as medications that can act like hormones and when you're constantly being marinated in a mix that contains hormone replacement therapy, the cells can become overactive and can become cancer cells."), etc. Dr. Weiss is the author of Living Well Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of Your Life Begins
• The Shower Shirt "The ONLY shower garment to protect mastectomy drains and hemodialysis catheters from water while showering. Use it now. Wear it later."
• 'Shower Shirt' Takes Innovation Prize, Enables Women To Shower After Mastectomy (Elaine Schattner, Forbes, 5-10-15)
• Cover-Up (Carol Scott-Conner, Pulse, 4-18-14). Prosthesis, reconstruction, or go with one breast? A doctor/patient talks about the discomfort of dressing in the swimming pool dressing room.
• TheBreastCareSite.com. Full of information and you can use search function to find more.
• Breastcancer.org (breast cancer information and awareness). Here's a good example: the difference between absolute and relative risk
• The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America by Barron H. Lerner. An account of the breast cancer wars: the insistent efforts of physicians to vanquish the "enemy"; the fights waged by feminists to combat a paternalistic legacy that silenced patients; and the struggles of statisticians and researchers to generate definitive data in the face of the great risks and uncertainties raised by the disease; and in newest edition, a postscript on the most recent breast cancer controversy: do mammograms truly lower mortality rates or do they lead to unnecessary mastectomies? A look at the pursuit of dramatic cures with sophisticated technologies, the ethical and legal challenges raised by informed consent, and the limited ability of scientific knowledge to provide quick solutions for serious illnesses.
• No Regrets After Double Mastectomy, but Questions Remain (Roni Caryn Rabin, Well, NY Times, 3-21-16) "There are things Ms. Foldes, a 58-year-old accountant from Woodmere, N.Y., wishes she had known when she chose a double mastectomy, like the fact that the process of reconstruction would drag on for five months and leave her forever unable to sleep on her stomach. Or that it would leave her with no sensation 'from the front all the way to the back in the entire bra area,' she said. 'Nothing. Zero. Zip.' "
• Double mastectomy after breast cancer is pointless for most women, experts find ( Sarah Knapton, The Telegraph, 3-11-16) The majority of women who have double mastectomy would never have developed cancer in the healthy tissue, new research shows. "This surgery offers no significant survival benefit to women with a first diagnosis of breast cancer," says Dr Mehra Golshan, Brigham Women’s Hospital. Although there had been a rise in women opting for contralateral prophylactic mastectomy (CPM) -- the surgical removal of a breast unaffected by cancer –- there had been no change in survival. Unnecessary surgery leaves women open to complications and infections, the researchers warn, as well as the possibility of psychological problems such as depression.
• 6 Things Not to Say to Someone With Cancer (Melanie Haiken, Caring.com)
• Chemo or Lourdes? Welcome to Cancerland (Michael Carbine, Pulse, 5-5-14)
• My 40-day breast cancer (Emma Gilbey Keller, The Guardian, 4-27-12). A handful of atypical cells one week; a double mastectomy and reconstructive surgery the next. It's a cure, but it's brutal.
• Can Good Care Produce Bad Health? (Amy Berman, RN, The Health Care Blog, 8-15-12) "I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited....In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand.
• 9 questions about inflammatory breast cancer, answered (Cynthia DeMarco, MD Anderson Center, 10-23-19)
• Terminal breast cancer leads woman to pick palliative care, not aggressive therapy (Amy Berman | Health Affairs, Washington Post, 4-30-12) "Breast cancer, in general, has a five-year survival rate nearing 90 percent. But inflammatory breast cancer, which I suspected the spot might be, is different." One expert advises aggressive treatment. But, she writes, "The 'treat aggressively' approach can leave patients bruised and battered, wishing they were dead. Yes, perhaps a few months of added life come with it — but at what cost? Furthermore, recent evidence suggests that people with certain cancers might actually live longer — and better — using a palliative approach, such as the one I’m taking." "As you read this piece, I’m heading toward two years into a terminal diagnosis. I have the most deadly form of breast cancer, and it will eventually kill me. So far the disease seems to be held at bay by one small yellow pill each night (an estrogen blocker to slow the cancer’s growth), some extra vitamins and minerals, and a monthly infusion to stave off such problems as spontaneous fractures that can be caused by the cancer eating at my spine."
• A nurse with fatal breast cancer says end-of-life discussions saved her life (Amy Berman, Washington Post, 9-28-15) Metastatic cancer will one day kill her, but the advanced-care planning conversations she has had with her health-care team have been lifesaving since her diagnosis. "I use the word 'lifesaving' advisedly because that is what these conversations are truly about. When done well, they can shape care in ways that give people with serious illness a chance at getting the best life possible....Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a 'Niagara Falls trajectory' — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days." Encouraged by one doctor to undergo aggressive treatment, she knew she didn't want the side effects. "I am pleased to report that the subsequent nearly five years have rewarded my decision to seek palliative rather than more aggressive treatment. The cancer has spread a bit farther from my spine and into a couple of my ribs. But because my treatment focuses on helping me live well and feel well, I haven’t been in the hospital."...I estimate I’ve saved about a million dollars by avoiding care I do not want, which includes the cost of chemotherapy, radiation, surgery to remove the breast, at least one hospitalization for that care, and the follow-up care to the surgery. Chemotherapy alone would have cost upward of $500,000....The benefits of a rule from Medicare covering such conversations are clear: better health, better care and, in many cases, lower costs. Most important, these conversations will be lifesaving, enabling those of us with serious illness to live the way we want to, fully and deeply for as long as possible." Amy Berman died July 14, 2015.
• Why breast cancer survivors should avoid late-night eating (Laurie McGinley, Wash Post, 3-31-16). Parts of this puzzle me, but late-night eating is my downfall, sweets in particular (which feed cancer growth). Need practical advice on how to curb late-night binges.
• My Left Breast (here, "Not So Fast," 2012 findings about 4 types of breast cancer. "When I was first diagnosed—thrown into the deep end of the pool—that was one of the first things that I learned: There are four basic types of breast cancer:
1) Estrogen-reactive (me).
2) Progesterone-reactive (not me).
3) Her-2 positive (me).
4) “None of the above” Formally known as “triple negative” (not me)."
• National Breast Cancer Coalition
• Dr. Susan Love Research Foundation (for a future without breast cancer)
• The Sister Study (NIH, National Institute of Environmental Health Sciences) A Study of the Environmental and Genetic Risk Factors for Breast Cancer.
• Susan B. Komen Breast Cancer Foundation
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Blogs about breast cancer
• Breast Cancer Action
• Breast Cancer? But Doctor....I hate pink (Ann Silverman's blog on living with metastatic cancer. Early detection is not the same as cure, she learned.)
• Cancer Bitch (a feminist blogs about her breast cancer)
• Cancer's Not Pink (Stephanie Theobald, The Guardian, 3-15-12). Women are rebelling against the fluffy imagery surrounding breast cancer
• Get real about breast cancer (a single mother's blog)
• Lisa Bonchek Adams on metastatic breast cancer, grief & loss, life, and family. Read Remembering Lisa Adams (Katherine Rosman, NY Times, 3-13-15). "She wrote at length on her blog and in quick snippets on Twitter about the details of her medical treatment, her long-held but growing frustration with what she and others have called the “pinkwashing” of breast cancer awareness, which painted a pretty picture of early detection while ignoring the ugliness of deadly metastasis, and her unconditional love for the three children she sought to raise in a normal household even as she focused on preparing them for her death."
• My 40-day breast cancer (Emma Gilbey Keller, The Guardian, 4-27-12). A handful of atypical cells one week; a double mastectomy and reconstructive surgery the next. It's a cure, but it's brutal.
• My Left Breast (here, "Not So Fast," 2012 findings about 4 types of breast cancer)
• Pinky Pie (Sue Hessel's blog)
• To Hell & (Hopefully) Back (April Hamilton's blog about what happens when you learn you have a rare breast tumor, and two days later your husband announces he's leaving you)
• The 24 Best Breast Cancer Blogs of 2013 (Robin Madell and Tracy Rosecrans, Healthline, 7-23-13)
• The Best Breast Cancer Blogs of 2014 (Heidi Godman and Tracy Rosecrans, Healthline 5-5-14)
• When the writer becomes the patient (Karen D. Brown, Boston Globe, 1-29-14). A health journalist who has written about changing guidelines for breast cancer screenings finds herself caught between statistics and personal decisions.
• The Price of Beauty: Some Hidden Choices in Breast Reconstruction (Natasha Singer, NYTimes 12-23-08)
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A FEW BOOKS ABOUT BREAST CANCER:
• A Breast Cancer Journey: Your Personal Guidebook by the American Cancer Society
• Breast Cancer Survival Manual: A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer by John Link, 4th edition.
• Dr. Susan Love's Breast Book (valuable if you have early-stage cancer; get the latest edition)
• Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer by Nancy G. Brinker with Joni Rodgers
• The Red Devil: To Hell With Cancer - And Back by Katherine Russell Rich (long-term survivor of stage 4 breast cancer)
• Fox, Jackie. From Zero to Mastectomy: What I Learned and You Need to Know About Stage 0 Breast Cancer, a "mammoir" about being diagnosed with DCIS, or ductal carcinoma in situ, stage 0.
• Lord, Audre. The Cancer Journals (about her breast cancer and mastectomy)
• Raab, Diana M. Healing With Words: A Writer's Cancer Journey. Raab's story of surviving a rare form of breast cancer (DCIS or ductal carcinoma in situ--cancer of the mammary glands, detectable only through a mammogram).
• What We Might Learn from the Early-Stage Breast Cancer Disclosures of Sandra Lee and Rita Wilson (Elaine Schattner, Forbes, 5-12-15)
• Riggs, Nina. The Bright Hour: A Memoir of Living and Dying. A much-loved, three-hankie memoir by a young woman with a loving husband and two children, who discovers she has metastatic breast cancer and has to say goodbye to all that.
• Joyce Wadler. My Breast, One Woman's Cancer Story (Plucky Cancer Girl Strikes Back, Vol. 1) Kindle
• Wittman, Juliet. Breast Cancer Journal: A Century of Petals
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Problems with breast implants
• One Implant, Two Prices. It Depends On Who’s Paying. ( Victoria Knight, KHN, 12-11-18) Breast implants — used for both cancer and cosmetic surgeries — give a glimpse into how hospitals mark up prices of medical devices to increase their bottom lines. Dr. Anupam Jena, a health economist at Harvard Medical School, said it’s precisely because cosmetic patients pay out-of-pocket that their costs for implants are far lower than what hospitals charge reconstructive patients. “Whatever the cost is for the implant, they can’t up-charge too much, or a patient will just go somewhere else.” Breast implants are just one example of how medical devices are significantly marked up by hospitals. A 2017 study published in JAMA found that for knee and hip implants, insurance companies were paying double what the hospitals paid when they purchased the implants from manufacturers. But, said one health policy professor, “you can almost guarantee the list price you see on a hospital bill is not what the hospital is getting paid by insurance companies,” which bargain for discounts.
• Breast Implant Recalled After Link to More Rare Cancer Cases (AP, NY Times, 7-24-19) Breast implant maker Allergan Inc. issued a worldwide recall Wednesday for certain textured models after regulators alerted the company to a heightened cancer risk with the devices. New information showed Allergan's Biocell breast implants with a textured surface were tied to the vast majority of cases of a rare form of lymphoma. The move follows similar action in France, Australia, Canada and other nations. The FDA is not recommending women with the implants have them removed because the cancer is so rare, but say they should check with their doctor if they have symptoms, which include pain and swelling.
• A Shocking Diagnosis: Breast Implants ‘Gave Me Cancer’ (Denise O'Grady, Health, NY Times, 5-14-17) Breast implant-associated anaplastic large-cell lymphoma is a "mysterious cancer that has affected a tiny proportion of the more than 10 million women worldwide who have received implants. Nearly all the cases have been linked to implants with a textured or slightly roughened surface, rather than a smooth covering. Texturing may cause inflammation that leads to cancer. If detected early, the lymphoma is often curable....Until recently, many doctors had never heard of the disease, and little was known about the women who suddenly received the shocking diagnosis of cancer brought on by implants."
• 9 Deaths Are Linked to Rare Cancer From Breast Implants (Denise Grady, NY Times, 3-21-17) "Cases generally come to light when symptoms develop, like lumps, pain, fluid buildup and swelling." FDA "said it was impossible to say how many cases exist, because of limited reporting of problems and a lack of worldwide sales data on implants." The problem is more likely to occur with textured implants, which have a pebbly surface, than with smooth implants.
• Breast Implants Are Linked to Rare but Treatable Cancer, F.D.A. Finds (Denise O'Grady, NY Times, 1-27-11) Breast implants may cause a small but significant increase in the risk of an extremely rare but treatable type of cancer... The risk applies to both saline- and silicone-filled implants, and to all women who have them, whether for reconstruction after cancer surgery or for cosmetic enlargement of the breasts. The cancer, anaplastic large-cell lymphoma, involves the immune system. It is not breast cancer. It is usually a systemic disease, but in the cases linked to implants, the lymphoma grew in the breast, usually in the capsule of scar tissue that formed around the implant."
• ‘Going Flat’ After Breast Cancer (Roni Caryn Rabin, NY Times, 11-1-16) 'The nascent movement to “go flat” after mastectomies challenges long-held assumptions about femininity and what it means to recover after breast cancer....Women’s health advocates fought for and won approval of the Women’s Health and Cancer Rights Act of 1998, which requires health plans to cover prosthetics and reconstructive procedures....In promoting the surgery, doctors cite studies that suggest breast reconstruction improves a woman’s quality of life after cancer. But some women say that doctors focus too much on physical appearance, and not enough on the toll prolonged reconstructive procedures take on their bodies and their psyches. Up to one-third of women who undergo reconstruction experience complications." “That’s the dirty little secret of breast reconstruction: The risk of a major complication is higher than for the average elective surgery,” said Dr. Clara Lee, an associate professor of plastic surgery at Ohio State University who performs the procedure.
• Dispute Over Cancer Tied to Implants (Denise Grady, NY Times, 2-18-11) A plastic surgeon who saw an online seminar available only to members of the American Society of Plastic Surgeons or the American Society for Aesthetic Plastic Surgery "made a transcript of portions of it and sent them to Public Citizen. The New York Times viewed the seminar and verified that Dr. Haeck did advise the audience to call the lymphoma a 'condition' when talking to patients 'rather than disturb them by saying this is a cancer, this is a malignancy.' FDA warns "that women with implants should pay attention to changes in their breasts and see a doctor if swelling, lumps, pain, asymmetry or other symptoms develop. The lymphoma can occur years after the implant surgery."
Colon and colorectal cancer
Colon cancer up.• Colon and Colorectal Cancer (general information from National Cancer Institute)
Screening/testing for colorectal cancer
• Colon Cancer Symptoms (Suzanne Dixon,Verywell Health, 7-24-22) Symptoms can be local or systemic, and some people will not have any symptoms. Research has shown that there is a significant delay between when people first notice signs of colon cancer and when it is actually diagnosed. This lag time could result in colon cancer spreading further, which lowers the chance of successful treatment. A thorough overview of symptoms, risks, etc.
• Colorectal cancer mystery: Rising rates among millennials, Gen X (Associated Press, STAT News, 2-28-17) Colorectal cancer mostly strikes middle-aged and older people, but new research shows a disturbing rise in cases among young adults. Rectal cancer is driving the problem. Few have traditional risk factors, says Dr. John Marshall, saying other suspects include changes in the protective bacteria that line people’s digestive tracts. Symptoms include blood in stool; changes in bowel habits such as diarrhea, constipation or narrowing of stool that lasts more than a few days; unintended weight loss; and cramps or abdominal pain.
• Colon Cancer Is Rising Among Younger Adults. Here’s What to Know. (Trisha Pasricha, NY Times, 3-20-23) With cases projected to continue climbing through 2023, scientists are racing to understand why. Younger people most commonly develop rectal bleeding as a first symptom, which doctors think may be because their cancers are more likely to occur closer to the end of the colon. Binge drinking — typically defined as five or more drinks for men in about two hours, and four or more for women — is a possible driver. Obesity at age 20 or 30 may more than double your risk of early-onset colorectal cancer. And people under 50 tend to wait about two months longer than those over 50 to get medical attention after first noticing their symptoms. And the "cancers that affect younger people are more likely to be inherently aggressive.” Also, "If you have a first-degree relative (like a parent or a sibling) who had colorectal cancer diagnosed before age 60, or if you have two first-degree relatives diagnosed at any age, then you are at higher risk."
• Colorectal Cancer: What Millennials and Gen Zers Need to Know (Kathy Katella, Yale Medicine, 3-2-23) Yale Medicine doctors warn that people as young as age 20 need to be aware of the warning signs.
• For Reasons Unknown, Colon And Rectal Cancer Rates Are Rising In People Under 50 (Elaine Schattner, Forbes, 11-6-14) Screenings recommended at age 45.
• A Cancer Trial’s Unexpected Result: Remission in Every Patient (Gina Kolata, N Times, 6-5-22) It was a small trial, just 18 rectal cancer patients, every one of whom took the same drug. But the results were astonishing. The cancer vanished in every single patient, undetectable by physical exam, endoscopy, PET scans or M.R.I. scans. Dr. Luis A. Diaz Jr. of Memorial Sloan Kettering Cancer Center, an author of a paper published Sunday in the New England Journal of Medicine describing the results, which were sponsored by the drug company GlaxoSmithKline, said he knew of no other study in which a treatment completely obliterated a cancer in every patient. “I believe this is the first time this has happened in the history of cancer,” Dr. Diaz said.
• Chadwick Boseman’s tragedy is America’s tragedy: In colorectal cancer hot spots, young men are dying at higher rates (Nicholas St. Fleur, STAT, 6-22-21) In South Carolina and Mississippi are two of 232 counties in the mainland U.S. where men aged 49 and under are at unusually high risk of dying from colorectal cancer, according to a study published last year in the American Journal of Cancer Research. Compared with white men, Black men in these hot spots who have colorectal cancer are more likely to be diagnosed with advanced stages of the disease and less likely to survive it. A strong link has been found between smoking and early-onset colorectal death in the hot spots, and contributing factors may be obesity and lack of access to healthy foods and possibly consumption of high-fructose corn syrup.
“There’s a whole lot of factors that contribute,” said Professor Charles R. Rogers, “like masculinity, poor patient-provider communication, embarrassment, fear, fatalism.” Many are unaware if their family has a history of colorectal cancer, which raises one’s own risk for the disease. As a result, they often ignore possible symptoms of colorectal cancer and delay getting screened. For many Black men, just talking about preventive measures like colonoscopies, or symptoms like bleeding from the rectum or a change in bowel habits, can be uncomfortable because it deals with such an intimate part of the body.
• A Clinical Trial Helped Me Beat the Odds Against Colorectal Cancer (Jacob (J.J.) Singleton, Cure Today, 8-12-22) The way I saw it was that I could either die from cancer, or from the side effects from the clinical trial. It was a difficult decision to make, but I am glad I chose it.
• Colorectal Cancer Clinical Trials A good place to start researching what's available for you.
• New Guideline Lowers Age to Begin Colorectal Cancer Screening (Diana Swift,MedPage Today, 3-9-21) Data on colorectal cancer (CRC) screening gathered over the past decade have prompted the American College of Gastroenterology (ACG) to update its guidelines. Age for starting CRC screening in average-risk men and women should be lowered to 45 from 50, with routine screening still recommended to age 75.
• Her First Colonoscopy Cost Her $0. Her Second Cost $2,185. Why? (Michelle Andrews, Bill of the Month, KHN and NPR, 3-31-22) Colonoscopies can be classified as for screening or for diagnosis. How they are classified makes all the difference for patients’ out-of-pocket costs. The former generally incurs no cost to patients under the ACA; the latter can generate bills. The Centers for Medicare & Medicaid Services has clarified repeatedly that under the preventive services provisions of the ACA, removal of a polyp during a screening colonoscopy is considered an integral part of the procedure and should not change patients’ cost-sharing obligations.
• Colorectal cancer screening: Science should trump convenience (Naresh Gunaratnam, STAT, 9-24-18) The Multi-Society Task Force on Colorectal Cancer recommends Cologuard as an acceptable second-line screening option. The task force concluded that physicians should recommend colonoscopy first. For patients who decline to have one, the FIT test should be offered next, followed by second-tier tests such as Cologuard and CT colonography for patients who decline both of the first-line options.
• A good alternative to having a colonoscopy? Maybe not (David Lazarus, LA Times, 8-21-14) There are few medical tests with as high a squirm factor as colonoscopies. Some of the alternative tests coming up have a high rate of false positives, so you end up getting the colonoscopy anyway, but they're being marketed directly to consumers, so they're getting customers.
• “The Golden Age of Older Rectums” (for investors) (listen to An Arm and a Leg documentary or read the transcript. "Private equity investors have made their way into many areas of our lives. Now, they’re at the gastroenterologist’s —and lots of other medical specialists, too. We learned why these doctors are selling their practices to private equity, and what it could mean for your health care and your bills....Surprise billing is not an accident. It is a business model for private equity companies. When you go to the hospital, there are staffing companies figuring out how to make sure the hospital has the number of doctors it needs every day there are private equity firms that have been purchasing up those staffing companies and those private equity companies have figured out that, you know, lo and behold, a surprise out of network bill is. Bigger than an in-network bill." The biggest add-on will be a "facility fee," which is "like a cover charge, usually from a hospital, basically just for walking in. They can be wildly-expensive -- hundreds or even thousands of dollars -- and they take a lot of folks by surprise."
• Dr. Mel Ona gets a colonoscopy live and awake with no sedation (YouTube video, 22 minutes) While most people undergo this procedure with sedation, Dr. Ona shows that the procedure is safe. He gets his colonoscopy live and awake with no sedation--and, like you, gets to watch the interesting trip through his colon on video. Says Dr. Ona: 'As you can tell from my video, the procedure was painless. I opted for no sedation for a couple of reasons. First and foremost, to share or rather emphasize the importance of getting screened for a cancer that's preventable.
'Unsedated (or sedated) colonoscopy is simply one option to consider. Other screening tests can be stool testing (for detecting blood or cancer DNA in the stool), imaging ("virtual" colonoscopy or colonography), or flexible sigmoidoscopy (scope inserted up to the left side of the colon). The best screening test is the one that gets done. The other reason was to demystify the procedure and to show people that not only is it painless (with the caveat that the operator/endoscopist is expert in maneuvering the scope...not every gastroenterologist is as "gentle" with scope insertion!) but it is also safe and, in my opinion, quite interesting to watch. That was the first time I've ever seen my own colon/bowel and I was relieved to know it was ok.... Over 50,000 people DIE every year of colorectal cancer - a preventable cancer at that.' The comments are interesting.
• Are Antibiotics Linked to Early-Onset Colorectal Cancer? (Mike Bassett, MedPage Today, 7-3-21) Over-use of antibiotics may lead to an increased risk of colon cancer at all ages, suggests a Scottish study. The study, discussed at the World Congress on Gastrointestinal Cancer, "provides further reasons to reduce, where possible, frequent and unnecessary antibiotic prescribing."
• I never wanted to be a cancer expert, but then my wife got sick. A caregiver’s tale. (Saul Schwartz, WaPo, 2-17-14) A seasonal diary of his wife's care from diagnosis of colon cancer through her death.
• How to Halve the Death Rate From Colon Cancer (Denise Grady, NY Times, 5-1-07) "The reason this cancer is so easily prevented or cured is that most of the time it begins as a polyp in the lining of the intestine, progressing slowly and possibly turning malignant. Tests that examine the colon can find polyps, and doctors can snip them out before they become cancers. Or the tests can reveal early tumors that can also be removed. But tests for colorectal cancer are not popular."
• Colorectal Cancer Rises Among Younger Adults (Knvul Sheikh, NY Times, 7-31-19) 'These cancers are much more common in older patients. But new data from Canada and the U.S. show a sharp increase among adults in their 20s and 30s....Persistent constipation, cramps, bloating, blood in stool, unexplained weight loss and fatigue can all be symptoms. Younger people and their doctors often overlook the warning signs because “cancer is not on their radar,” Ms. Siegel said.'
• Is a Colonoscopy Your Only Testing Option? (Nancy Monson, AARP, Feb/March 2015) Though less accurate, other screenings exist for those who can't stomach a colonoscopy. The pros and cons of virtual colonoscopy, Cologuard, take-home fecal tests, and sigmoidoscopy.
• Tests to Detect Colorectal Cancer and Polyps (National Cancer Institute)
• Too Many Colonoscopies in the Elderly (Paula Span, NY Times, 3-12-13) In 2008 :the United States Preventive Services Task Force reviewed years of research and recommended against routine screening for colorectal cancer in adults over age 75 and against any screening in those over 85....Screening those over age 50, the group most at risk, makes complete sense. Removing the polyps that may become cancerous years later (but also may not) can prevent the disease. But while colonoscopy is underused by the poor and uninsured, it’s overused by the elderly."
• Screening: Early alert (Cassandra Willyard, Nature Medicine, 5-14-15) Scientists are developing an array of choices for screening colorectal cancer, but patients often choose to go without.
• To foster screening, new colon cancer tests emphasize convenience (Cassandra Willyard, Nature Medicine, 5-14-15) "Although colonoscopy is by far the most common screening option in the United States, researchers have yet to demonstrate its effectiveness in a randomized controlled trial. Other countries have embraced cheaper, less-invasive tests that have proved to be effective....The US Preventive Services Task Force, an independent panel that issues evidence-based screening recommendations, lists three acceptable methods: he faecal occult blood test (FOBT) alone, FOBT in combination with sigmoidoscopy, and colonoscopy....A variant of FOBT called a faecal immunochemical test (FIT), which uses an antibody to detect globin in the stool, can pick up between 55% and 100% of cancers detected with colonoscopy. But stool tests do not involve peering inside the colon and so are less effective at detecting precancerous polyps...The American Cancer Society recommends that people between the ages of 50 and 75 at average risk of the disease have either a colonoscopy every 10 years, a sigmoidoscopy every 5 years, or a stool test every year." Willyard also talks about relative costs.
• I never wanted to be a cancer expert, but then my wife got sick. A caregiver’s tale. (Saul Schwartz, WaPo, 2-17-14)
• A good alternative to having a colonoscopy? Maybe not (David Lazarus, LA Times, 8-21-14) "Although stool tests have been around for a while, Cologuard is the first to use a person's DNA, rather than blood, to spot tumors....Here's the thing, though: Exact Sciences says Cologuard isn't an exact science. (HealthNewsReview.org, 8-22-14) See also Mayo spins rosy tale on Cologuard cancer screen — ignoring costs, false-positives and other crucial context (Kathlyn Stone, HealthNewsReview.org, 11-4-15)
• The IARC Perspective on Colorectal Cancer Screening (Béatrice Lauby-Secretan et al., New Enland Journal of Medicine, 5-3-18) The International Agency for Research on Cancer concluded that screening for colorectal cancer with stool-based tests and with lower endoscopy (either colonoscopy or sigmoidoscopy) saves lives. (Subscribers only.)
• Colorectal Cancer Control Program (CRCCP) (CDC)
• After Polyps Are Detected, Patients May No Longer Qualify For Free Colonoscopies (Michelle Andrews, KHN, 1-30-18) “Insurers will cover the test, but whether the patient is held harmless for the copay and deductible depends on the insurer,” said Dr. J. Leonard Lichtenfeld, deputy chief medical officer at the American Cancer Society.
• Colon Cancer Treatment–Health Professional Version (PDQ)
• Fight Colorectal Cancer. (Get behind a cure for colon and rectal cancer) See The Currently Incurable Scientist on experimental immunotherapies.
• Why Is This Bacterium Hiding in Human Tumors? (Gina Kolata, NY Times, 11-23-17) Whether Fusobacterium nucleatum causes colon tumors is unknown. But a new study hints that it may be “an integral part of the cancer.”
• Drug Combination Reduces Number of Colorectal Polyps in Patients with Hereditary Cancer Syndrome (National Cancer Institute, 3-14-18) "In a new analysis of a prevention clinical trial, a two-drug combination substantially decreased the number of precancerous colorectal polyps in people with a very high hereditary risk of developing colorectal cancer" -- with familial adenomatous polyposis (FAP).
• How One Tiny Facebook Group Became A Life-Saving Hotbed Of Cutting Edge Colon Cancer Clinical Trials (Brent Lambert, FEELGuide, 12-30-16) "How a Facebook group of cancer patients and their loved ones, called COLONTOWN, is allowing patients to share their fears and the latest medical advances that could have a life or death impact. The group has become a global leader in providing the most cutting edge information on the latest research and clinical trials that even most doctors don’t know about.
• Blue Hope Nation (a private Facebook group with more than 5,000 members). Also supported by the Colon Cancer Alliance.
• Colontown, an online community of more than 40 “secret” groups on Facebook for colorectal patients, survivors, and caregivers. There are separate neighborhoods focused on patients with different stages of disease, the differing types of treatment, and special interests – such as CRC clinical trials, young-onset CRC patients, and local support groups. Sponsored by the Colon Cancer Alliance. To join, sign up here. You can also call the helpline at 877.422.2030.
• Colon Cancer Alliance Inform. Prevent. Support
• 'Scoring System' May Spot Those in Greatest Need of Colonoscopy (Robert Preidt, HealthDay News, 8-11-15), But one expert cautions that even 'low risk' patients can still develop suspicious polyps. Read important points made in review of article on HealthNewsReport .
• Vitamin D May Boost Colon Cancer Survival, Study Finds (Dennis Thompson, Health Day, 1-12-15)
• An aspirin a day – for years – may keep colon cancer away (Will Boggs, MD, Reuters Health, 8-24-15) Taking one or two baby aspirins a day for at least five years was tied to a lower risk of colorectal cancer in a study from Denmark. "Unless low-dose aspirin is taken continuously, there is little protection against colorectal cancer.” See HealthNewsReview summary and evaluation of story.
• Dave Barry on finally getting his colonoscopy (informative humor)
• Last Writes (Hilton Koppe, Pulse, 4-17-15) "The truth is, you didn't get that colonoscopy in time. I wonder if I could have done more to get it for you earlier--before your inflammatory bowel disease, well controlled for so many years, turned into bowel cancer. I made the referral at the appropriate time; I didn't know that the public system's waiting list would be so long." Dr. Koppe practices in rural New South Wales
• Cowgirl Attitude (a Nashville girl gets colon cancer and lives to blog about it--if you don't like reading about poop, this is not the blog for you)
• The Human Salivary Microbiome Is Shaped by Shared Environment Rather than Genetics: Evidence from a Large Family of Closely Related Individuals (Liam Shawa, Andre L. R. Ribeiroc, et al., mBio, 9-12-17) by studying the salivary microbiomes in 800 members of a large extended Ashkenazi Jewish family living in different locations, researchers found that host genetics plays no significant role and that the dominant factor is the shared environment at the household level. This effect appears to persist in individuals who have moved out of the parental household, suggesting that aspects of salivary microbiome composition established during upbringing can persist over a time scale of years. On the same study: Swapping Spit: You Likely Share Your Roommate’s Microbiome, Even Without Kissing (Jen Viegas, Seeker, 9-10-17) It "appears that the mix of microorganisms inhabiting each human’s mouth is largely determined by the person’s household environment...roommates of any kind — be they relatives or former strangers — can likely affect what’s living in each other’s mouths....Residences turn out to be surprisingly full of spit residue, even if people in the homes are frequent hand washers....“Setting up a healthy oral microbiome in early life could provide the most benefit."
• Unsuspected Symphony ( Jeremiah Horrigan, Pulse). After surgery to remove two feet of his colon, ordinary things Horrigan had paid little or no attention to all his life sparkled with meaning.
• Joel Siegel's advice for (colon) cancer patients (written for an American Cancer Society newsletter, reprinted by Roger Ebert 6-29-07) "I know why Tony Snow, George W's press secretary, called his bout with colon cancer, 'the best thing that ever happened to me.' And why my friend, Gilda Radner said about cancer, 'If it wasn't for the downside, everyone would want it.'
• Lung and colorectal cancer treatment and outcomes in the Veterans Affairs health care system (Leah l.Zullig and others, PubMed, 1-14-15 abstract from Cancer Manag Res. 2015; 7: 19–35.
• Support Groups, United Ostomy Associations of America (UOAA)
• Osto Group. Ostomy Products to the Uninsured. All you pay is shipping and handling. Call 877-678-6690
• Chris4Life Colon Cancer Foundation
• American Society of Colon & Rectal Surgeons
"The best side-effect of fighting a life-threatening disease is learning how to live.
"When you're made frighteningly aware of how little time you may have left, learn what is important: family, friends and helping others."
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• Back to Information about specific cancers
Gastrointestinal Stromal Tumors
• GIST Support International
• Gastrointestinal Stromal Tumors Treatment–Patient Version PDQ (National Cancer Institute)
• Gastrointestinal Stromal Tumors Already Proving to Be Treatable With Targeted Therapies (Heather Millar, Cure, 3-23-16) Identified only a decade and a half ago, GIST is already treatable with several targeted therapies, and scientists are researching more.
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• Back to Information about specific cancers
Leukemia, lymphoma, myeloma, and other blood cancers
• Types of blood cancer: leukemia, lymphoma, myeloma, Myelodysplastic syndromes (MDS), Myeloproliferative neoplasms (MPNs). (Leukemia & Lymphoma Society, "fighting blood cancers")
• Leukemia & Lymphoma Society (Dana-Farber Cancer Institute. 7-6-15)
• Information booklets (download free or order online, practical information in booklets on many aspects of the various types of leukemia and lymphoma (Leukemia & Lymphoma Society)
• Types of Leukemia (AML, ALL, CML, CLL, and HCL) (Cancer Tutor). "Leukemia is a cancer of early blood-forming cells, most frequently of the white blood cells although some leukemias begin on other blood cell types. Leukemia can be described as fast-growing (acute) or slow growing (chronic). Whether leukemia is myeloid or lymphocytic depends on which bone marrow cells the cancer starts in.
The different types of leukemia have varied outlooks and treatment options.
---Acute myeloid (or myelogenous) leukemia (AML)
---Acute lymphocytic (or lymphoblastic) leukemia (ALL)
---Chronic myeloid (or myelogenous) leukemia (CML)
---Chronic lymphocytic leukemia (CLL)
---Hairy cell leukemia (HCL), a very rare type of chronic leukemia
"Chronic leukemias are generally slow-developing, long-term conditions. The most commonly diagnosed leukemia in adults are CLL and AML."
• Be the Match The cure for blood cancer is in the hands of ordinary people. Donate bone marrow. Find out if you are eligible to donate cord blood, if it’s available in your area and what donating cord blood means for patients. Save more lives through cellular therapy by improving donor availability and removing barriers to transplant for patients of Latino descent.
• Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad. "It started with an itch—first on her feet, then up her legs, like a thousand invisible mosquito bites. Next came the exhaustion, and the six-hour naps that only deepened her fatigue. Then a trip to the doctor and, a few weeks shy of her twenty-third birthday, a diagnosis: leukemia, with a 35 percent chance of survival....When Jaouad finally walked out of the cancer ward—after three and a half years of chemo, a clinical trial, and a bone marrow transplant—she was, according to the doctors, cured. But as she would soon learn, a cure is not where the work of healing ends; it’s where it begins."
• Roundup NHL Cancer Lawsuit Update (Miller & Zois, attorneys) Bayer/Monsanto reached an approximately $11 billion settlement with most plaintiffs. Approximately 80% of filed Roundup lawsuits by patients with non-Hodgkins lymphoma have been settled. Some NHL victims received settlement checks in 2021 and 2022. Many others will receive their Roundup settlement money later this year. Good history of stages of the Roundup litigation.
• A Fortunate Turn of Events in Chronic Lymphocytic Leukemia (Amy Paturel, Cure Today, 9-17-19) "Many people experience recurrent disease for years and require multiple treatment courses. Fortunately, with novel treatment options and combination therapies, CLL is increasingly shifting from an incurable chronic disease to a once-and-be-done cancer....'With the development of targeted therapies, including single-agent and combination regimens, patients are achieving more durable remissions and better quality of life.'”
• Saving Deddi's Life: What Donating Stem Cells To My Father Taught Me (Paris Alston, WBUR CommonHealth, 4-5-19) "I was the match. My father had been diagnosed a few months ago with a potentially fatal leukemia [AML], and it turned out my biology made me the best potential donor of the cells that could give him a better chance at survival." A daughter gets a rare chance to help give her father life - and learns that African-American stem-cell donors are especially needed. (An informative article.)
• Facts and Statistics (Leukemia & Lymphoma Society)
• LLS Blood Cancer discussion boards ("talk" with other patients and survivors online)
• Ephron’s Leukemia Was Uncommon and Complicated (Pam Belluck, NY Times, 6-28-12) Acute myeloid leukemia accounts for only about 1 percent of deaths from cancer in this country. It is often preceded by myelodysplastic syndrome, a condition in which stem cells in the bone marrow are unable to produce enough red or white blood cells or platelets or produce blood cells that are too immature to function properly, said Dr. Paul Hendrie. In the last six months of her life, her condition turned into acute myeloid leukemia, and she succumbed to pneumonia. Between 12,000 and 15,000 cases of myelodysplastic syndrome are diagnosed each year and the average age at onset is 71.
• NIH is pressed to ensure affordable pricing before awarding a license for a CAR-T therapy (Ed Silverman @Pharmalot, STAT Plus, 12-6-18) At issue are patent rights for an acute myeloid leukemia treatment the agency recently indicated would be awarded to a company called ElevateBio.
• Pediatric chronic myeloid leukemia is a unique disease that requires a different approach (Nobuko Hijiya et al., Blood, 1-28-16) Chronic myelogenous leukemia (CML) in children is relatively rare and treatment for children differs from that for adults.
• The drug was meant to save children’s lives. Instead, they’re dying (Rosa Furneaux and Laura Margottini, TBIJ, STAT, 1-25-23) Substandard asparaginase, a childhood leukemia drug, has been shipped to more than 90 countries, overwhelmingly from companies in India.
• Drug shortages jeopardize the lives of children with cancer (Yoram Unguru, STAT, 3-19-19) A recent clinical trial showed that adding the drug nelarabine to standard chemotherapy led to a significant improvement in survival for children with Alice’s form of leukemia. Recognizing that some medications are more important than others, many countries throughout the world have adopted the World Health Organization’s essential medicines list (known as EMLc). Over the past 30 months, nearly two-thirds of these essential medicines have been or are currently in short supply in the U.S. (today, four of the 18 are in short supply). During the same period, another nine chemotherapy agents not included on the EMLc have been or are currently in short supply in the U.S., which should create an essential medicines list for pediatric oncology drugs.
• What Is the Difference Between Hodgkin Lymphoma and Non-Hodgkin Lymphoma? Both Hodgkin and non-Hodgkin lymphoma are malignancies of a family of white blood cells known as lymphocytes, which help the body fight off infections and other diseases. Hodgkin lymphoma is considered one of the most treatable cancers, with more than 90 percent of patients surviving more than five years. Survival rates for patients with non-Hodgkin lymphoma tend to be lower, but for certain types of the disease, the survival rates are similar to those of patients with Hodgkin lymphoma.
• "52 Conversations with Brian Moore" Heather Bucalos went in for testing on a suspected ovarian cyst, which turned out to be Hodgkins lymphoma. Here she's interviewed about her diagnosis and treatment -- and surviving the treatment. Useful also for practitioners, learning what parts of the medical system are frustrating and not helpful enough to a frightened patient.
• The Science of PD-1 and Immunotherapy (Dana Farber Cancer Institute
• Cascade Of Costs Could Push New Gene Therapy Above $1 Million Per Patient (Liz Szabo, Kaiser Health News, 10-17-17) "Outrage over the high cost of cancer care has focused on skyrocketing drug prices, including the $475,000 price tag for the country’s first gene therapy, Novartis’ Kymriah, a leukemia treatment approved in August. But the total costs of Kymriah and the 21 similar drugs in development — known as CAR T-cell therapies — will be far higher than many have imagined, reaching $1 million or more per patient, according to leading cancer experts. The next CAR T-cell drug could be approved as soon as November."
• Drugmaker raises the price of an old chemo medicine tenfold amid persistent shortages (Ed Silverman, STAT News, 10-27-22) Areva Pharmaceuticals has begun marketing vials of fludarabine at a wholesale price of $2,736, a much steeper cost than the $272 charged for the same dosage by Fresenius Kabi and the $109 price tag from Teva Pharmaceuticals. Fludarabine is mainly used to treat chronic lymphocytic leukaemia (CLL). It may also be used in trials for low grade non-Hodgkin lymphoma (NHL), hairy cell leukaemia, acute myeloid leukaemia and a type of lymphoma that affects the skin called mycosis fungoides.
• Cured From Cancer, Almost (Mikkael A. Sekeres, Well, NY Times blog, 5-11-15) "For people approaching their eighth decade, the decision of whether or not to take chemotherapy for leukemia is anything but straightforward. The treatment can be brutal, confining a person to his or her hospital room for a month, and it can accelerate a death that might have taken months if the leukemia were left to its own devices. People go through with it to try to win the golden ticket — the chance to be cured of leukemia. In someone my patient’s age, that occurs only 5 percent of the time."
• NCI study revises molecular classification for most common type of lymphoma (National Cancer Institute,4-11-18) In a new study, researchers identified genetic subtypes of diffuse large B-cell lymphoma (DLBCL) that could help explain why some patients with the disease respond to treatment and others don’t
• Follicular Lymphoma: (Usually) Slow to Grow, Responsive to Treatment—But Difficult to Cure (infographic, Lymphoma Resource Center, Medpage Today, 3-31-16).
• Considerations in the initial management of follicular lymphoma (Loretta Nastoupil, Rajni Sinha, and Christopher R. Flowers, Community Oncology, 2012) A full discussion.
• Risk Stratification in Follicular Lymphoma: Sorting Through the Options (Richard Robinson, Medpage Today). This and other stories appear in Lymphoma Resource Center (Medpage Today)
• As the Tumor Turns (a lymphoma patient's blog, not for the faint of heart)
• Living With Cancer in America (Jonathan Alter, Newsweek, 4-8-07) His experience being treated for mantle cell lymphoma.
• Five Years to a Cure (Ellen Diamond, Pulse, 8-24-12). Ignoring doctors' overoptimistic promises of finding a cure, this CLL patient is learning to live with her slow-growing form of leukemia, to make careful choices among treatments, and to make the most of her new reality. A positive but realistic view of life as a cancer patient.
• Time on Fire: My Comedy of Terrors (by Evan Handler, recounting with grim humor his battle with leukemia at age 24 and his hellish journey through the land of the sick)
• ‘Breakthrough’ Leukemia Drug Also Portends ‘Quantum Leap’ In Cost (Liz Szabo, Kaiser Health News, 8-23-17) When doctors talk about a new leukemia drug from Novartis, they ooze enthusiasm, using words like “breakthrough,” “revolutionary” and “a watershed moment.” But when they think about how much the therapy is likely to cost, their tone turns alarmed. The treatment, CTL019, belongs to a new class of medications called CAR T-cell therapies, which involve harvesting patients’ immune cells and genetically altering them to kill cancer. It’s been tested in patients whose leukemia has relapsed in spite of the best chemotherapy or a bone-marrow transplant. The prognosis for these patients is normally bleak. But in a clinical trial, 83 percent of those treated with CAR T-cell therapy — described as a “living drug” because it derives from a patient’s own cells — have gone into remission. Switzerland-based Novartis hasn’t announced a price for the medicine, but British health authorities have said a price of $649,000 for a one-time treatment would be justified given the significant benefits.
• This drug is defying a rare form of leukemia, chronic myeloid leukemia — and it keeps getting pricier (Carolyn Y. Johnson, WaPo, 3-9-16) When the drug company Novartis launched its breakthrough cancer medicine, Gleevec, in 2001, the list price was $26,400 a year....But Gleevec’s arc shows that even for a medicine that is the fruit of years of research — a prime example of what drug companies aspire to do — the market can fail. Instead of rising in sudden surges, Gleevec’s price crept inexplicably upward each year. When powerful second-generation drugs began to give physicians choices, Novartis raised the price even faster. This price inflation helped turn Gleevec, a drug that was not supposed to make much money, into the biggest drug by revenue at one of the world’s largest drug companies." A tale of market failure and what happens when there are no price controls on drugs (although the article doesn't specifically say that).See other articles on this site about unfair pricing of drugs.
• Class action lawsuit against Roundup Weedkiller (Monsanto) The World Health Organization’s International Agency for Research on Cancer (IARC) found that glyphosate in Roundup is likely a cancer-causing agent. The IARC report linked the side effects of Roundup to an increased risk of non-Hodgkins lymphoma (NHL). Anyone who has used Monsanto’s Roundup and later been diagnosed with non-Hodgkin lymphoma or another form of cancer (mostly leukemias and lymphomas) may be eligible to file a lawsuit. Surviving family members may also be eligible to file a wrongful death lawsuit against Monsanto, should their loved one have passed away as a result of their cancer. Several personal injury law firms are accepting applications to join the suit. Anyone who has been exposed to Monsanto’s Roundup Weed Killer and has developed lymphatic cancer, like non-Hodgkin’s lymphoma, within the last decade may be eligible to receive compensation for their suffering.
• Leukemia for Chickens by Roger Madoff.
• It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia by Jay Shotel
• Time on Fire: My Comedy of Terrors a memoir by Evan Handler. "Based on Evan Handler's off-Broadway play, this is the most engaging-yet-harrowing memoir you’ll read of one person’s brutal, even torturous, experiences at the hands of one of New York's most famous cancer hospitals. Handler, one of today’s distinctive character actors (if you didn't love him in Californication, you'll recognize him as the bald guy who married Charlotte on Sex and the City), pulls no punches in describing what he was put through as a 24-year-old with a rare and hard to treat cancer: acute myeloid leukemia."~ Micah Solomon, Forbes. Read the reader reviews on Amazon, as it might not be the right book for everyone.
• Surviving the Cure: Cancer Was Easy, Living Is Hard by Andrew Bundy. After barely surviving treatments for leukemia, a teenager discovers the after-effects of the cure make returning to a normal life all but impossible. "Not long after I returned home, my lungs started failing. The cure was killing me." "For many children diagnosed with cancer, not only can the therapy carry significant and life-threatening side effects during treatment, the effects can extend years beyond completion of cancer therapy into survivorship. For some patients with leukemia who must undergo a stem cell transplant, the long-term effects can be especially severe. Among many messages contained in Andrew's story, one is the clear need to develop more effective and less toxic treatment; patients deserve no less."--Dr. Peter C. Adamson, Children's Hospital of Philadelphia.
• Is blood cancer curable at an early stage? (David Chan, Quora, informal comments)
• Choosing to Die at Home (Karen Raymaakers, Leukemia & Lymphoma Expert, About Health, 5-11-13)
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• Back to Information about specific cancers
Lung cancer
Lung cancer is NOT written about in most magazines and other venues that carry heavy cigarette advertising, so you may not have seen these articles.
• Key Findings About Lung Cancer (American Lung Association, State of Lung Cancer, 2023--a page rich in information) More Americans than ever are surviving lung cancer. While the disease remains the leading cause of cancer deaths among both women and men, over the past five years, the survival rate has increased by 22% nationally to 26.6%. Also, it has increased at a faster pace among communities of color so that it is no longer significantly lower for black Americans than it is for white Americans.
Lung cancer screening can now detect the disease at an earlier stage when it’s more curable and treatment options hold more promise because of advances in lung cancer research. The United States Preventive Services Task Force expanded its recommended age range for screening and to include more current and former smokers. This dramatically increased the number of women and Black Americans who are considered at high risk for lung cancer but only 4.5% of all those eligible were screened in 2022.
People of color who are diagnosed with lung cancer face worse outcomes than white Americans: they are less likely to be diagnosed early, less likely to receive surgical treatment, and more likely not to receive any treatment.
• Lung cancer rates have decreased for the Marlboro Man, but have risen steeply for nonsmokers and young women – an oncologist explains why (Estelamari Rodriguez, The Conversation, 2-1-23) Most people diagnosed today with lung cancer are not active smokers. About 20% of women with lung cancer have never smoked – higher than for men with lung cancer who’ve never smoked. Women also started smoking in the years when filtered cigarettes were most commonly used. This led to an increased risk of a type of cancer called adenocarcinoma due to the way cigarette filters distribute tobacco smoke to the outer parts of the lungs. Some studies suggest that women are more susceptible to the carcinogenic effects of exposure to tobacco and cigarette smoke, including second-hand smoke, and may develop lung cancer after fewer years of smoking compared to men. Other lung cancer risk factors include a family history of cancer and exposure to asbestos, radon and air pollution.
• Walmart to end cigarette sales in some stores (Anne D'Innocenzio, AP News via Wall Street Journal, 3-28-22) Walmart will no longer sell cigarettes in some of its stores (including California, Florida, Arkansas and New Mexico) though tobacco sales can be a significant revenue generator. Target ended cigarette sales in 1996; the CVS drugstore chain, 2014.
• Lung Cancer Choices (3rd edition, free download or read online, Caring Ambassadors) Includes chapters on surgery for lung cancer, systemic therapy for non-small cell cancer (chemotherapy, targeted therapy, and immunotherapy), radiation therapy for non-small cell lung cancer, treatment for small cell cancer, emerging therapies, nutrition, and so on). Excellent illustrations
• Advanced lung cancer is no longer an automatic death sentence (Anita Slomski, UChicago Medicine, 7-31-19) Twenty years ago, getting diagnosed with lung cancer was essentially a death sentence. Today, 80 percent of people with stage 1 lung cancer will be cured, and survival has increased dramatically for those with advanced lung cancer, thanks to better insights into the disease, new therapies, advanced technology and less invasive surgery.
• Stage 3 lung cancer: All that you need to know (Scientific animations) A splendid, beautifully illustrated, plentiful explanation (part of a series). See also
• Stage 3 Lung Cancer Life Expectancy (VeryWellHealth) A clear explanation of stages within Stage 3.
• A Breath of Fresh Air for Advanced Lung Cancer (Deborah Abrams Kaplan, CURE, Lung Cancer edition, 11-16-18) Immunotherapy and stereotactic radiation are making a difference for some patients with advanced lung cancer. A stage 3 diagnosis usually means the lung tumor has spread to the lymph nodes, often the mediastinal lymph nodes in the middle of the chest or the supraclavicular nodes at the base of the neck. most stage 3 NSCLCs are unresectable — they can’t be surgically removed — due to extensive lymph node involvement or because the tumor location is not amenable to surgery at this spot.... New on the block: Although chemotherapy is used, radiation is the most effective treatment for lung cancer, says Ronald McGarry, a clinical professor in the department of radiation medicine at the University of Kentucky in Lexington. “Chemotherapy has two roles in stage 3,” he says. “It makes the cancer cells more sensitive to the killing effect of radiation, and, in theory, it decreases the risk of metastatic disease.” Immunotherapy — the use of substances to stimulate the immune system to help the body fight cancer — is the latest option to be added to stage 3 NSCLC treatment. "Although there haven’t been many changes in treatment during the last 25 years, clinicians are excited to see some positive momentum with immunotherapy. “For the first time, we’re seeing changes in treatment that are significant, and so the hope is that treatments continue to evolve at a more rapid pace."
• ‘But I never smoked’: A growing share of lung cancer cases is turning up in an unexpected population (Sharon Begley, STAT, 1-26-21) Scientists disagree on whether the absolute number of such patients is increasing, but the proportion who are never-smokers clearly is. Now there is growing pressure to understand how never-smokers’ disease differs from that of smokers, and to review whether screening guidelines need revision.
• Lung cancer deaths are declining faster than new cases. Advances in treatment are making the difference (Norman E. Sharpless, STAT, 8-13-20) Improvement in lung cancer — which accounts for more deaths than breast, prostate, and colorectal cancers combined — was credited with driving the decline in cancer deaths.
• Lung Cancer Patients Live Longer With Immune Therapy (Denise Grady, NY Times, 4-16-18) Odds of survival can greatly improve for people with the most common type of lung cancer (an advanced stage of non-squamous non-small-cell lung cancer) if they are given a new drug that activates the immune system along with chemotherapy, a major new study has shown. The findings, medical experts say, should change the way doctors treat lung cancer: Patients with this form of the disease should receive immunotherapy as early as possible. "What it suggests is that chemotherapy alone is no longer a standard of care,” said Dr. Leena Gandhi, a leader of the study....The immune-activating drug was a checkpoint inhibitor called pembrolizumab, or Keytruda, made by Merck, which paid for the study. The chemotherapy was a drug called pemetrexed, plus either carboplatin or cisplatin."
• Why a New Immunotherapy for Lung Cancer Works for Only Some People (Eva Kiesler, Memorial Sloan-Kettering Cancer Center, 4-16-15) "Immunotherapy with a new drug called a PD-1 inhibitor can be a powerful treatment option for people with non-small cell lung cancer (NSCLC), but thus far doctors haven’t been able to predict which patients it will work for. Now a Memorial Sloan Kettering study shows the drug is more likely to be effective in people whose tumor DNA contains a lot of mutations caused by exposure to tobacco smoke."
• Non-Small Cell Lung Cancer Treatment (PDQ®)–Patient Version (National Cancer Institute's excellent full overview with good illustrations)
• Small Cell Lung Cancer Treatment (PDQ®)–Patient Version (National Cancer Institute's excellent full overview with good illustrations)
• Targeted Therapy for Non-Small Cell Lung Cancer (American Cancer Society) Included here as an example for a specific type of cancer. Targeted drugs work differently from standard chemotherapy (chemo) drugs. They sometimes work when chemo drugs don't, and they often have different side effects. At this time, targeted drugs are most often used for advanced lung cancers, either along with chemo or by themselves.
• Targeted Drug Therapy for Non-Small Cell Lung CancerAs researchers have learned more about the changes in non-small cell lung cancer (NSCLC) cells that help them grow, they have developed drugs to specifically target these changes. Targeted drugs work differently from standard chemotherapy (chemo) drugs. They sometimes work when chemo drugs don’t, and they often have different side effects. At this time, targeted drugs are most often used for advanced lung cancers, either along with chemo or by themselves.
• Know Your Genes: Testing for Genomic Mutations in Lung Cancer (Arlene Weintraub, Cure, 5-6-19) Testing for genomic mutations in lung cancer helps pinpoint targeted therapies. This article is part of a special issue on lung cancer.
• #LCSM tweetchat On Twitter, the hashtag #LCSM stands for Lung Cancer Social Media. People use that hashtag in tweets every day to flag tweets that talk about lung cancer treatment, research, funding, or patient issues. You will need a Twitter account to view or participate in the tweetchat.
• Medical Writers Circle (Caring Ambassadors) Links to practical and informative articles on various aspects of lung cancer, including lung cancer and Social Security disability benefits, lung cancer in never smokers, targeting the immune system, Practical Implications of the New Lung Cancer Staging System the role of the patient navigator, and so on.
• To Screen or Not to Screen? That Is the (Eternal) Question ( Shalmali Pal, ASCO Reading Room, MedPage Today) The latest research on the pros and cons of low-dose CT-based screening for lung cancer. See also Lung Cancer Screening: Are the Gatekeepers Not Fully Engaged? (MedPage Today) Lack of knowledge seems to keep referring docs from discussing screening with eligible patients (Update 11 of 'To Screen or Not to Screen' series--scroll down that page for links to other articles in series)
• Is Lung Cancer Screening Right for Me? (Lung Cancer Screening Tools, Patient Decision Aids, Agency for Healthcare Research and Quality, or AHRQ) A decision aid for people considering lung cancer screening with low-dose computed tomography, or CT scans. (AHRQ also has pages on lung cancer screening tools for clinicians, including A Clinician's Checklist.
• Lung Cancer Screening Registries (The Centers for Medicare & Medicaid Services (CMS) issued a national coverage determination (NCD) for Medicare coverage of screening for lung cancer with low dose computed tomography (LDCT) if certain eligibility requirements are met. Here is the list of CMS-approved lung cancer screening registries.
• Types of Lung Cancer (Lung Cancer Alliance)
• Lung Cancer Alliance Saving lives, advancing research, empowering people.
• Lung Cancer 101 (Lung Cancer.org)
• The Different Stages of Lung Cancer (HealthiNation, video and text). See also How Immunotherapy Can Treat Lung Cancer
• Lung disease lookup (American Lung Association). Lung diseases include asthma, COPD, influenza, lung cancer, pneumonia, tuberculosis
• What to know about stage 3 lung cancer (Medical News Today, 2-10-21) Categories, survival rate, prognosis, treatments, symptoms) When lung cancer reaches stage 3, it has begun to spread beyond the lung where it started. Doctors may call this stage “locally advanced.” Cancer has not yet spread to more distant parts of the body. Around 15% of lung cancers are small cell lung cancer (SCLC). The others are non-small cell lung cancer (NSCLC), which spreads more slowly and has a better outlook. About a third of people will receive a diagnosis at stage 3.
• Lung Cancer (a full, excellent, illustrated Wikipedia entry, with links to other resources)
• Quitting Smoking, Guide to (American Cancer Society)
• No Good Alternatives to Cigarettes (podcast, Centers for Disease Control and Prevention)
• Marijuana and Your Risk of Lung Cancer (WebMD) Marijuana smoke has many of the same harmful substances as tobacco, and often more of them. Among the hazards are: benzo(a)pyrene, benz(a)anthracene, phenols, vinyl chlorides, nitrosamines, and reactive oxygen species.... You usually inhale marijuana smoke deeply and hold it in, which gives the toxins more contact with your lung tissue and more chance to stick there. You also generally a smoke a joint all the way to the end. Tar, the sticky stuff left after burning, has high levels of harmful substances, and it’s concentrated at the end of a joint. A discussion of these and other factors.
• Free to Breathe (raising funds for lung cancer research and helping patients with free resources)
• Bonnie J. Addario Lung Cancer Foundation (Transforming lung cancer into a chronically managed disease)
• Lung Cancer 101 (CancerCare, a highly rated nonprofit organization)
• When Breath Becomes Air Paul Kalanithi's best-selling memoir (a young neurosurgeon faced with a terminal lung cancer diagnosis attempts to answer the question What makes a life worth living?) His main point: we need more doctors who assimilate the humanities and more artists who assimilate the science of medicine.
• Lung Cancer: Myths, Facts, Choices -- and Hope by Claudia I. Henschke, Peggy McCarthy, and Sarah Wernick
• We must tell sad medical stories too (Richard Young, Kevin MD, 1-11-17) There is evidence that patients with severe forms of cancer and other terminal diseases who choose comfort care early-on live longer and better than those who choose aggressive care. What happened when a man with lung cancer went through hell because his family insisted he keep "fighting" to survive. Accepting hospice and palliative care makes sense at a certain point.
• Do Not Go Gentle: The Search for Miracles in a Cynical Time by Ann Hood. Her search for a miraculous cure for her father's inoperable lung cancer.
• What happens when you breathe (Brooke Jarvis, New Yorker, 1-25-21) Our lungs sustain a delicate equilibrium in our bodies, while exposing us to a world that seems increasingly out of balance. More than just simple pumps, the lungs are portals to our environment.
• Breath Taking: The Power, Fragility, and Future of Our Extraordinary Lungs by Michael J. Stephen.“In a time when we had our most powerful antibiotics, New York was doing worse than Dr. Biggs had done ninety years before, with education and no antibiotics at all.” The story is a reflection of the remarkable fact that, in the twentieth century, an era of astounding medical breakthroughs, simple—and relatively inexpensive—public-health interventions saved more lives than clinical medicine did.~Brooke Jarvis
• A cancer 'you live with until the next discovery' (Lenny Bernstein, WaPo via Sydney Morning Herald, 12-7-15) As science begins to link many lung cancers to genetic mutations, a group of researchers is trying to identify more abnormalities among younger patients. The researchers are finding disease types that are treatable with existing medications, giving people hope they did not have before. The Genomics of Young Lung Cancer Study was organized and funded by a former oil company executive who survived lung cancer in her 50s. "Bonnie Addario, who also has lost four family members to the disease, embraced unorthodox approaches to the study, recruiting subjects via social media and establishing a central clearinghouse for information from participating institutions. Typically, researchers don't share data."
• FDA Expands Approval of Pembrolizumab for First-Line Treatment of Non-Small Cell Lung Cancer (National Cancer Institute, 6-6-17)
• We’re spending $107 billion on cancer drugs, but is it worth it? (Carolyn Y. Johnson, Wonkblog, WaPo, 6-2-16) report from IMS Institute for Healthcare Informatics highlights 70 new cancer treatments, treating more than 20 types of tumors, all approved in the past five years....One drug that is profiled in the report is a lung cancer medication called necitumumab, which costs $11,000 to $12,000 a month. It has been shown to lengthen life by 1.6 months. If its price were linked to its effectiveness, a three-week cycle would cost less than $1,500, according to a JAMA Oncology study published last year....As $10,000-a-month cancer drugs have become a norm, doctors have begun to push back, insisting that many drugs aren't worth the price.
• She shattered Big Oil’s glass ceiling. Now, her energy is focused on lung cancer. (Ariana Cha, Washington Post, 3-18-16) "There are 31 diseases associated with smoking, but lung cancer just got stuck as the one everyone knows about so there are people who feel, ‘Well, you smoked and you brought this upon yourself and therefore you deserve that you get.’ That is why funding for lung cancer is so low."...Through her private foundation in Silicon Valley, Bonnie J. Addario is trying to do for lung cancer what the Susan G. Komen foundation’s pink-ribbon campaign did for breast cancer. Her doctor failed to detect her serious lung cancer.
• Letting Go (Atul Gawande, New Yorker, 8-2-10). What should medicine do when it can't save your life? Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left. Story features a patient with lung cancer.
• Lung and colorectal cancer treatment and outcomes in the Veterans Affairs health care system (Leah l.Zullig and others, PubMed, 1-14-15 abstract from Cancer Manag Res. 2015; 7: 19–35.
• How Two Studies on Cancer Screening Led to Two Results (H. Gilbert Welch, Steven Woloshin, and Lisa M. Schwartz, NY Times, 3-13-07). A crystal-clear explanation of how two studies — in the country’s two most prestigious medical journals — arrive at diametrically opposite conclusions. A screening that increases survival rates does not necessarily reduce mortality -- it could have started measuring at an early age. And because all lung cancer patients get treated, overdiagnosis means some people receive treatment that can’t help them (because they do not need it) and can only cause harm. Dr. Welch is the author of Should I Be Tested for Cancer?: Maybe Not and Here's Why As one reader writes, "Even when a treatment can cut the deaths from a particular cancer in half, most current treatments create non-cancer deaths, many of which will be improperly reported."
• A welcome side effect: Novartis anti-inflammatory may cut risk of lung cancer, study finds (Meghana Keshavan, STAT, 8-27-17) The "biologic drug canakinumab from Novartis (NVS) — which has thus far only been approved to treat a rare disease — lowered the incidence of cardiovascular complications by 15 percent" -- in line with the hypothesis that "by targeting an inflammatory pathway seen in heart disease, one could lower the risk for heart attack, stroke, and cardiovascular death." "Now, the researchers have found that the drug had a surprising (and welcome) side effect: It also sharply cut the rates of lung cancer... Among patients who were given the lowest dose of canakinumab, lung cancer rates dropped 26 percent. A medium dose led to a 39 percent decline in lung cancer. And the highest dose decreased incidence by a startling 67 percent. Patients who received this highest dose also had about half the rate of overall cancer death, compared to those who received a placebo....We set this trial up in patients with prior heart attack, but no prior history of cancer. Patients who have prior heart attack are very likely to have smoked cigarettes — and I knew, because I’m an inflammation researcher, that they’re also at a high risk for lung cancer. So this particular study — though set up for atherosclerosis — turns the way people look at oncology upside down...The reason we have to be careful about this: It’s very exploratory, and needs to be confirmed. And while the biology is obviously very exciting and makes a lot of sense, it’s not yet clear how one would translate that into treatment algorithms for someone who already has lung cancer."
• The Health Consequences of Involuntary Exposure to Tobacco Smoke. The Surgeon General’s report (2006) updates the evidence of the harmful effects of involuntary exposure to tobacco smoke.
• Why a New Immunotherapy for Lung Cancer Works for Only Some People (Eva Kiesler, Memorial Sloan-Kettering Cancer Center, 4-16-15) Immunotherapy with a new drug called a PD-1 inhibitor can be a powerful treatment option for people with non-small cell lung cancer (NSCLC), but thus far doctors haven’t been able to predict which patients it will work for. Now a Memorial Sloan Kettering study shows the drug is more likely to be effective in people whose tumor DNA contains a lot of mutations caused by exposure to tobacco smoke.
• Lung Cancer Health Center (WebMD links to news and features about lung cancer)
• Lung Cancer Top Cancer Killer of Women in Wealthy Nations (Steven Reinberg, HealthDay News, 2-4-15) Lung cancer has overtaken breast cancer as the leading cancer killer of women in developed countries, reflecting changing smoking patterns among females worldwide. "The disease is almost always caused by smoking, said lead researcher Lindsey Torre, an epidemiologist at the American Cancer Society. "But it takes about two to three decades to see lung cancer deaths due to smoking, because lung cancer does take a long time to develop," she said."
• U.S. Expands Approval of Merck Lung Cancer Drug (AP, NY Times, 10-2-15) "The Food and Drug Administration approved the drug, Keytruda, for advanced nonsmall cell lung cancer patients whose tumors have spread after taking other therapies. The disease accounts for roughly seven out of eight cases of lung cancer. Regulators approved Keytruda in 2014 to treat melanoma, the deadliest form of skin cancer. Keytruda is part of a promising new class of drugs called immunotherapies, which harness the body’s immune system to help fight cancer."' See also Immonotherapy.
• Under One Roof: Pulling Specialists Together to Improve Lung Cancer Care (PCORI -- Patient-Centered Outcomes Research Institute) Treatment of lung cancer requires the services of several specialists. A Memphis project is examining whether patient outcomes improve when care providers come together in a coordinated program.
• Asbestos-Related Lung Disease (Katherine M.A. O'Reilly, MD, and others, American Family Physician, 3-1-07) "Asbestosis generally progresses slowly, whereas malignant mesothelioma has an extremely poor prognosis. The treatment of patients with asbestos exposure and lung cancer is identical to that of any patient with lung cancer.... Smoking cessation is essential."
• LUNGevity Foundation. Find it. Treat it. Live The LUNGevity LifeLine Support Program matches a lung cancer patient or caregiver with a LifeLine Support Partner.
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• Back to Information about specific cancers
Carcinoma, melanoma and other skin cancers
There are three major types of skin cancers: basal cell carcinoma (BCC), squamous cell carcinoma (SCC), and melanoma. The first two skin cancers are grouped together as non-melanoma skin cancers. Actinic keratoses (AK, dry, scaly patches or spots) are precancerous growths.
• Types of skin cancer (American Academy of Dermatology, AAD)
• Skin Cancer (Medline Plus, National Library of Medicine, NIH)
• Types of carcinoma (Cancer-Symptoms.com)
• What’s the Difference Between Melanoma and Skin Cancer? (Dana Farber, 5-14-14) Discusses melanoma, squamous cell carcinoma and basal cell carcinoma)
• Slide show: Melanoma pictures to help identify skin cancer (Mayo Clinic)
• Moles Versus Melanoma Skin Cancer: Learn to Tell the Difference with Pictures (About Health). The ABCDE
• Topical skin creams effective to treat superficial basal cell carcinoma: New study (EurekAlert, 6-2-16) Investigators report on three-year follow-up of superficial BCC patients treated topically with non-surgical, noninvasive therapies in the Journal of Investigative Dermatology. HealthNewsReview evaluates and reports: Release offers thorough comparison of treatments for superficial skin cancers
• Squamous cell skin cancer (Medline Plus, National Library of Medicine, NIH)\
• These two drugs can eliminate one in five skin cancer tumours (David Nield, Science Alert, 4-24-16) "You might not have heard of ipilimumab and nivolumab before, and that's okay, but these two immunotherapy drugs could be the future of skin cancer treatment. Studies have shown that a new treatment using both of these drugs together can clear melanoma skin cancer tumours in 22 percent of cases.... In a recent trial involving 142 patients, where both drugs were used as treatment, 69 percent of patients were still alive after two years, compared with 53 percent who were using ipilimumab alone."
• Melanoma: Two Drug Combo Halves Death Risk (Charles Bankhead, Medpage Today, 6-3-15) Progression, tumor growth slowed, side effects considerable but manageable. An immunotherapy combination for untreated melanoma reduced the risk of death or progression by more than half as compared with a drug currently used as a standard of care, a large randomized trial showed. ""The most important thing this study shows is that we are beginning to define which patients may benefit from one drug and those that may benefit from both drugs. That will only inform conversations about toxicity for patients and physicians as they decide the treatment course."
• This oncologist says the USPSTF gets it wrong on skin cancer screening (Morganna Freeman, Kevin MD, 8-9-16) " In sum, it is a public disservice to say to patients (and physicians) that skin cancer screening is not an effective means of prevention." "Melanoma is the leading cause of cancer death in women aged 25 to 30; not surprisingly, these same women have likely been indoor tanners (the highest rate of use is among Caucasian females age 16 to 29). The National Health Interview Survey estimates 7.8 million women and 1.9 million men in the United States tan indoors each year, and more than 400,000 cases of skin cancer may be related...."
• Lawn, amusing but thought-provoking public service ad. You check your lawn for bad spots; why not your skin?
• Melanoma: ocular You Need to Know (Dana Farber, 5-5-14)
• Mohs micrographic surgery (allows skin cancer to be removed with less damage to the healthy skin around it).
• Skin lesion biopsy (Medline Plus, National Library of Medicine, NIH)
• MPIP: Melanoma Patients Information Page. The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends.
• Melanoma Resources (links to melanoma information on the internet, provided by two participants in MPIP, above). For example, here are links to articles about melanoma.
• Skin Cancer Foundation
• Vitamin B3 Is Found to Help People Prone to Some Types of Skin Cancer(Andrew Pollack, Business Day, NY Times, 5-13-15) In a clinical trial, people who took two pills a day of nicotinamide, a form of vitamin B3 available as a nutritional supplement, had a 23 percent lower risk of developing non-melanoma skin cancer than those who took placebo pills.
• After Long Fight, Drug Gives Sudden Reprieve (Amy Harmon, NY Times, 2-22-10) The trial of a melanoma drug offers a glimpse at a new kind of therapy tailored to the genetic profile of a cancer. For the melanoma patients who signed on to try a drug known as PLX4032, the clinical trial was a last resort. Their bodies were riddled with tumors, leaving them almost certainly just months to live. But a few weeks after taking their first dose, nearly all of them began to recover. Part of a series: Target Cancer.
• Mother who used sunbeds and never wore cream shares shocking picture of her skin cancer scar to warn others of the dangers (photo, Daily Mail, UK)
• Survival at 1 Year With MK-3475 in Melanoma (Nick Mulcahy, Medscape Specialty, 11-21-13)
• news for late-stage melanoma patients (T.J. Sharpe, Philly.com, 3-11-14). "Merck announced this week that it is expanding access for MK-3475 – the anti-PD-1 drug I have been taking for nearly a year. The drug, also known by its generic name of lambrolizumab, has already been granted Breakthrough Therapy status with the FDA, allowing the pharmaceutical company to work with the FDA to expedite approval of the drug. Now, a significantly greater population will be able to receive this treatment well before full approval is given."
• Rare skin cancers (AboutHealth). Cutaneous T-cell Lymphoma, Merkel Cell Carcinoma, Kaposi Sarcoma, Sebaceous Gland Carcinoma, Dermatofibrosarcoma Protuberans.
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer "I am now face to face with dying. But I am not finished with living." He is living sign ocular melanoma, for which about 50 percent of cases metastasize.
• When the System Fails (Sondra S. Crosby, The End, NY Times, 2-25-15) "The pathology report was a punch in the gut: malignant melanoma. The surgeon had not called me about the diagnosis. My patient did not understand it; he had never heard of melanoma."
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer "I am now face to face with dying. But I am not finished with living." He has ocular melanoma, for which about 50 percent of cases metastasize.
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Mesothelioma
(cancer of the lining of the lungs or abdomen, caused by exposure to asbestos)
I get a lot of suggestions for links for mesothelioma, many of them from law firms (which I find only in the tiny print at bottom of page). I assume many of them are seeking clients. I've tried to link only to those providing solid medical and social support information for mesothelioma patients, as I am not qualified to recommend the best law firm for mesothelioma patients.
• Mesothelioma The Mayo Clinic on symptoms and causes, diagnosis and treatment. A good overview.
• Asbestos Disease Awareness Organization (ADAO) "Hear Asbestos. Think Prevention." Blogs, videos, action alerts.
• Mesothelioma Information Resource Group (excellent illustrations, hard-to-read type!)
• 10 Things to Know About Asbestos in Drywall (JSE Labs, 8-2-21) Drywall ( “wallboard” or “gypsum board”) can be found in just about every building constructed after the 1930s. It was a popular alternative to traditional lath and plaster construction during World War II and the “building boom” that followed. Unfortunately, many building materials that were manufactured prior to the 1980s, including gypsum boards and the joint compounds that were used to join them together, contain asbestos. Because of its affordability and efficient installation process, drywall has remained one of the most popular materials used in both residential and commercial construction to this day. Drywall that contains asbestos isn’t hazardous to humans unless it’s disturbed, which often occurs during a home remodel or DIY project.
• Malignant mesothelioma (National Cancer Institute) "The major cause of malignant mesothelioma is being exposed to asbestos over a period of time. This includes people who were exposed to asbestos in the workplace and their family members. After a person is exposed to asbestos, it usually takes at least 20 years for malignant mesothelioma to form."
• Mesothelioma Trust Fund Get a free mesothelioma & compensation guide. See Mesothelioma & Asbestos Trust Funds Questions about your eligibility? Call 1-800-215-9896.
• Types of Mesothelioma (Mesothelioma Cancer Alliance) The four primary types of malignant mesothelioma based on where the tumors initially develop after asbestos exposure: in the lining of the lungs (pleural), abdomen (peritoneal), heart (pericardial) or testicles (testicular). The most common cell types for mesothelioma are sarcomatoid and epithelioid.
• Mesothelioma Cell Types (Mesothelioma Veterans Center) The three cell types of mesothelioma are Epithelioid, Sarcomatoid, and Biphasic. Most veterans with mesothelioma are diagnosed with the epithelioid cell type, which comes with the best prognosis.
• Mesothelioma (National Cancer Institute -- also called Malignant Mesothelioma)
• Pleural Mesothelioma Center. The most common of the four types of malignant mesothelioma cancer. Go online or call (1-855-995-1454)
• Mesothelioma (MedlinePlus)
• Mesothelioma Guide Useful resources, or call or chat with staff.
• Mesothelioma Applied Research Foundation
• Mesothelioma Veterans Center (resources and support for U.S. military veterans, who make up over 30% of all patients with malignant mesothelioma, especially among veterans from the Navy and Marines -- because Navy ships were once loaded with asbestos, because of its outstanding fire proofing properties). Since 2004 over 5,000 veterans have died from mesothelioma. Learn more about benefit options through VA-accredited claims agents, all free of charge. See also Veteran Asbestos Exposure During Service (MelotheliomaHelp.org)
• Mesothelioma Treatment Options (MelotheliomaHelp.org)
• Mesothelioma.net (an informative website and you can call online for information)
• Mesothelioma Community Network provides support for asbestos cancer patients and caregivers
• List of Mesothelioma Clinical Trials (Karst Von Oiste Law Firm, 4-11-2020)
• Case Sheds Light on the Murky World of Asbestos Litigation (Michale Tomsic, All Things Considered, NPR, 2-4-14) "This is a case about a bankrupt company, legal shenanigans, and a rare type of cancer. You may have seen TV commercials about mesothelioma, mainly caused by inhaling asbestos — minerals many companies once used in insulation and other products. According to a 2011 report from the U.S. Government Accountability Office, companies have set aside more than $30 billion for mesothelioma victims since the 1980s. Asbestos lawsuits have played a role in about 100 companies' going bankrupt." One particular bankruptcy case "laid bare the massive fraud that is routinely practiced in mesothelioma litigation." Read the comments, too.
• Bogus Asbestos Claims Cheat Companies, Lawyer Testifies (Tiffany Kary, BloombergBusiness, 3-13-13). "A wave of asbestos bankruptcies from 2000 to 2004 included companies such as Owens Corning, Fibreboard Corp., Babcock & Wilcox Co., Pfizer Inc.’s non-operating Quigley Co., Armstrong World Industries and United States Gypsum Co. All followed the example of Johns-Manville Corp., which pioneered the concept of an asbestos trust in its 1982 bankruptcy. By settling on an amount to be set aside for all current and future asbestos claims, companies could reorganize and exit bankruptcy free of lawsuits, leaving a trust and a trustee to manage distributions to alleged victims." But there have been legal shenanigans....by whom, it was not clear to me! From the many requests I get from law firms to be listed here, and the many Google entries warning victims they may lose their right to claim $$, I wonder how victims know who to trust.
• Types of Compensation for Mesothelioma Patients (MesotheliomaHelp.org. Sponsored by a law firm.)
• Court Order Disrupts Asbestos World, but What of the 'Perjury Pawns'? (Sara Warner, HuffPost, 2-28-14)
I have no way of knowing if the following firms are legitimate. Their websites seemed to be trying to be helpful:
• Mesothelioma Group (a helpful page on prognosis--you can also call 888-708-5660)
• Mesothelioma Network (provides mesothelioma patients with free resources, support, education, and referrals to experienced mesothelioma doctors
• Mesothelioma.net
• Mesothelioma support group (Meso Foundation)
• Asbestos.com (Mesothelioma Center, a law-firm advertisement with some useful info) "Our organization also provides free informational books, packets and a patient advocacy program that works one-on-one with individuals to help them find local doctors, treatment centers and support groups."
• Causes of Mesothelioma (Mesothelioma HelpNow, associated with a law firm, as most mesothelioma support groups seem to be). Exposure to asbestos is the only known cause of mesothelioma.
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Multiple myeloma
• Multiple Myeloma Research Foundation (MMRF) Powerful thinking advances the cure. Sign up for their newsletter.
• International Myeloma Foundation (IMF). Read about the IMF's Black Swan Research Initiative
• Bluebird Bio's "Impressive" Killer T-Cells Battle Myeloma, But Are Not A Cure Yet (Matthew Herper, Forbes, 6-1-18) A treatment that genetically modifies a patient's own white blood cells to attack the cancer multiple myeloma had "impressive" results in an early clinical trial, experts say. But it is not a cure and could still face tough competition from other therapies.
• A Mouse that Roared: Lori Alf's Fight Against Cancer and the Miracle Cure that Saved Her (Frank Lalli, Parade, 5-6-16) University of Pennsylvania researchers were organizing clinical trials to reprogram the immune systems of seriously ill myeloma patients like her. Instead of using chemotherapy drugs to attack the cancer, immunotherapy assaults cancer cells from within with a patient’s own re-engineered immune system. Alf had long believed immunotherapy—which avoids graft-versus-host complications by using the patient’s own cells—held the key to curing her cancer. She was determined to get into the trial funded by drug manufacturer Novartis. Alf was exactly the type of patient the researchers wanted—seriously ill with the abnormality they were targeting, yet hopefully strong enough to survive the rigors of the trial itself. The stakes were high: The immunotherapy (CAR T cell treatment) hadn’t even been tested on animals. Alf was “the mouse model.” In a process similar to kidney dialysis, she was hooked up to a machine that collected a type of white blood cells called T cells. “Then the lab made my T cells very angry,” she explains. Actually, the lab transformed the T cells with a protein called chimeric antigen receptor (CAR) into what they hoped would be an army of hunters that would recognize her enemy myeloma cells and kill them. Nearly two years later, Alf’s blood is totally normal, and she’s finding joy in the smallest moments of life, “like the smell of my dog, Versace,” she says.
• My Right to Die: Assisted suicide, my family, and me. (Kevin Drum, Mother Jones, Jan.Feb.2016 issue) "Sometime in the next few years the cancer will start to progress rapidly and there will be no more treatments to try. My bones will become more brittle and may break or accumulate microfractures. My immune system will deteriorate, making me vulnerable to opportunistic outside infections. I may suffer from hemorrhages or renal failure. My bones will stop retaining calcium, which will build up instead in my bloodstream. I may be in great pain—or I may not. Multiple myeloma can end in a lot of different ways. But one thing is sure: Once any of these symptoms start up, I'll be dead within a few weeks or months." A powerful piece about assisted dying.
• The Myeloma Beacon (independent, up-to-date news and information for the multiple myeloma community)
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• The Oral Cancer Foundation
• Support for People with Oral and Head and Neck Cancer (SPOHNC)
• Miracles Happen (this link goes to a page of personal essays worth reading, including How Cancer Gave Me My Voice Back about author and playwright Peter Tinniswood, who lost the power of speech to oral cancer, but, as he tells Toby O'Connor Morse, found a whole new lease of creative life.
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Ovarian, cervical, and other
gynecological/reproductive cancers
"More than 21,000 women in the U.S. will be diagnosed with ovarian cancer this year, the cancer society estimates. More than 14,000 will die from it, making it the fifth most deadly cancer among women. Recurrence rates are high and there have been few advances made beyond standard chemotherapy in some 30 years." Research has suggested that stress may similarly affect ovarian, colon, lung and prostate cancers.~Wall Street Journal (8-24-15)
• Foundation for Women's Cancer. Toll-free number: 1-800-444-4441. Types of gynecological cancers include cervical cancer, gestational trophoblastic disease (GTD), ovarian cancer, primary peritoneal cancer, uterin/endometrial cancer, vaginal cancer, vulvar cancer.'
• FORCE: Facing Our Risk of Cancer Empowered (Fighting Hereditary Breast and Ovarian Cancers)
• Male doctors said my ‘female’ cancer was incurable. Then a woman took command and gave me hope (Doreen Carvajal, STAT, 10-4-18) “Peritoneal cancer is furtive because the early, vague symptoms are often overlooked or mistreated and there is no screening test for it. Diagnosis usually comes late, after the cancer has spread. It is cared for in the same way as ovarian cancer, because the surface of the ovaries is made up of the same kind of cells that compose the peritoneum.” A team of male physicians pushed her to seek out alternative care when she was told her only option was to enter palliative care. “Every hospital, the surgeon assured me, follows the same standard treatment.” Shepherded by her brother-in-law, a doctor in Sweden, she got transferred to a top European cancer research center, where a female oncologist proposed, after treatment with chemotherapy, enrolling her in a clinical trial in immunotherapy, which harnesses the patient’s own immune system to attack cancer. Ten months later she was cancer-free.
"A 2013 survey of 13,000 women with ovarian cancer in my native state of California showed that nearly two-thirds did not receive standard care because they were patients at hospitals that didn’t treat many women with ovarian cancer. African-American women were even more likely to receive inferior care. The lesson was clear: Low-volume hospitals may not have access to gynecologic oncologists who are aware of the latest treatments with better success rates."
CERVICAL CANCER
• Cervical Cancer (general information about, National Cancer Institute)
• Cervical Cancer Treatments PDG (NCI, excellent overview, with illustrations)
• National Cervical Cancer Coalition (NCCC)
• Cervivor (informed, empowered, alive cervical cancer survivors). Read their stories.
• The Cancer Detectives (video, 54 minutes, American Experience, PBS, 3-26-24) The story of how the life-saving cervical cancer test became an ordinary part of women’s lives is as unusual and remarkable as the coalition of people who ultimately made it possible: a Greek immigrant, Dr. George Papanicolaou; his intrepid wife, Mary; Japanese-born artist Hashime Murayama; Dr. Helen Dickens, an African American OBGYN in Philadelphia; and an entirely new class of female scientists known as cyto-screeners.
• HPV Vaccine’s Impressive Success Story (Lila Abassi, American Council on Science and Health, 2-23-16) "Human Papillomavirus, the pathogen that causes 99.7 percent of cervical cancers, is also the most commonly sexually transmitted infection in both females and males. And it’s the third most common cause of gynecological cancer in the United States....Writing in the journal Pediatrics, Dr. Lauri E. Markowitz and colleagues reported that the HPV vaccine has helped bring down the prevalence of cervical cancer by 64 percent in females aged 14 to 19 years, and by 34 among those aged 20 to 24 years. This study, provides evidence for the first time of the impact of the vaccine among young women in the U.S."
• Cancer doctors leading campaign to boost use of HPV vaccine (Laurie McGinley, WaPo, 6-19-16) We have a vaccine for certain cancers. Why don't more people get it? The 64,000-member American Academy of Pediatrics has urged members to use the vaccine. But Cleveland pediatrician Margaret Stager, who works on adolescent health issues for the organization, said it remains “brand-new territory” for many doctors, especially older physicians. “They have seen whooping cough, meningitis, measles and mumps and have real-life evidence of the power of vaccines to save lives,” she said. “Now we have a whole new fundamental concept, because this vaccine is trying to prevent cancer several decades from now.”
• Has Laparoscopy Sung Its Final Song in Cervical Cancer? (Medpage Today, Meeting Coverage, ASCO, 8-2-19) Pedro T. Ramirez, MD, says his study 'defies all of the results that we knew' from previous data. In the recent LACC trial of more than 600 patients undergoing surgery for cervical cancer, the number of disease recurrences after laparoscopic or robotic-assisted procedures was nearly 4 times higher than that of recurrences after open abdominal surgery -- 27 vs 7 -- and significantly more patients who had minimally invasive surgery (both in laparoscopy and in robotic surgery) died during a median follow-up of 2.5 years -- 19 vs 3 with open surgery. Minimally invasive surgery was associated with worse disease-free survival and worse overall survival.
• WHO’s aggressive, three-part strategy aims to make cervical cancer a thing of the past (Erin Blakemore, Washington Post, 2-8-2020) The United Nations’ health agency's three-part strategy to wipe out cervical cancer is known as “90-70-90”: vaccinating 90 percent of women against multiple strains of HPV, screening 70 percent of women for cervical cancer at ages 35 and 45, and giving care to 90 percent of women diagnosed with cervical cancer. Taken together, those three steps could eliminate more than 74 million cases and save more than 62 million lives, researchers write.
• A Preventable Cancer Is on the Rise in Alabama (Eyal Press, New Yorker, 3-30-2020) The state’s refusal to expand Medicaid is causing poor women to miss out on lifesaving screenings. 'Jeff Sessions, who is running for his former Alabama Senate seat, aired a campaign ad accusing Democrats of plotting to provide “free health care for illegal immigrants.” In fact, undocumented immigrants are ineligible for Medicaid, but it’s not hard to imagine how such a claim might arouse indignation among poor voters in Alabama, where the income requirements for Medicaid are more stringent than in any state except Texas....Cervical cancer is now viewed by most physicians as preventable, and in more affluent parts of the country it is correspondingly rare. But in the poorer pockets of less wealthy states it remains disturbingly common.'
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OVARIAN CANCER
• National Ovarian Cancer Coalition (NOCC)
• Ovarian Cancer National Alliance
• Ovarian Cancer Research Fund Alliance
• Ovarian Cancer (Medline Plus's excellent overview and links to further information) Cancer of the ovary is not common, but it causes more deaths than other female reproductive cancers. There may be no early symptoms and it is hard to treat.
• Quality care boosts ovarian cancer survival (Ovarian Cancer Center, UC Irvine Health, California) Poor and African American women are less likely to survive ovarian cancer because of inferior care. Bristow and colleagues found that five-year survival rates varied significantly. (Improvement in ovarian cancer care is measured in length of survival after diagnosis rather than a "cure" rate.) Those on Medicaid or without insurance faced a 30 percent increased risk of death. Poor women—defined as having an annual household income of less than $35,000—had worse survival rates regardless of race"
• Johnson & Johnson and a New War on Consumer Protection (Casey Cep, New Yorker, 9-12-22) Weak and immunocompromised, Deane Berg left her job at the hospital, which meant she had more time to study the handouts about ovarian cancer that nurses had given her when she was diagnosed. A pamphlet distributed by Gilda’s Club included a list of risk factors, which Berg went through one by one, noting she had none of them. Then she came to a section about talcum powder and went to look at the big container of Johnson & Johnson body powder she kept in her bathroom to use after daily showers and the little bottle of Johnson & Johnson baby powder she took with her whenever she travelled. Both listed talc as an ingredient. J&J's slogan: “A sprinkle a day helps keep odor away.”
"Two years later, she had her ovarian tissue tested, and the pathologist found talc in one ovary. Shortly afterward, with her cancer in remission, she decided to sue, in what became the first baby-powder lawsuit against Johnson & Johnson to ever make it to trial. The company has spent billions on cases about one of its most popular products, talcum powder. As its executives try a brazen new legal strategy to stop the litigation, corporate America takes note."
• Does talcum powder cause cancer? A legal and scientific battle rages (Jen Christensen, CNN, 4-11-18) Deborah Giannecchini "and thousands of others claim that they got their ovarian cancer after using a common toiletry as a part of their daily feminine hygiene routine. They used talc-based powder, commonly referred to as talcum powder or baby powder, though some baby powder products are cornstarch-based. Cornstarch products are not believed to cause any health problems. Some 4,800 women and their families have now sued pharmaceutical giant Johnson & Johnson, which has sold the talc-based product Johnson's Baby Powder for more than 100 years....Some studies have found that women face an increased risk of ovarian cancer with use of talc in the genital area, but others do not."
• Ovarian Cancer (cancer of the ovaries, MedicineNet.com)
• Ovarian cancer stories (SHARE, for women facing breast and ovarian cancers)
• BRCA1 and BRCA2: Cancer Risk and Genetic Testing (National Cancer Institute BRCA fact sheet)
• Hereditary Breast and Ovarian Cancer (Cancer.net fact sheet)
• Symptoms of Ovarian Cancer (Mayo Clinic) Early-stage ovarian cancer rarely causes any symptoms. Advanced-stage ovarian cancer may cause few and nonspecific symptoms (listed) that are often mistaken for more common benign conditions, such as constipation or irritable bowel.
• Patient stories (Mercy Hospital)
• Heart Drug Linked to Extra Years for Cancer Patients (Ron Winslow, Wall Street Journal, 8-24-15). "A common heart drug called a beta blocker was associated with a striking increase in survival for women with ovarian cancer in a study that suggests a possible new strategy for treating a variety of tumors." See HealthNewsReview's review of the article, summarizing it and adding information a patient might need.
• Details from a new report on ovarian cancer (Laurie McGinley, Wash Post, 3-2-16) Partly because it sneaks up on women without announcing itself, ovarian cancer has a five-year survival rate of just under 46 percent (only a little more than one-third of black women survive that long), compared to nearly 90 percent for breast cancer, more than 80 percent for endometrial cancer and nearly 70 percent for cervical cancer. Ovarian cancer is a misnomer; it is a "constellation of distinct types of cancer" that spread to the ovaries. Get genetic testing to help map treatment decisions. Chances of getting good care improve if you get treated by gynecologic oncologists, and get treatment at a high-volume hospital or cancer center.
• 'Outstanding' Ovarian Cancer PFS With Olaparib Maintenance (Liam Davenport, Medscape, 10-21-18) Munich. "A first-of-its kind phase 3 study found that patients with advanced ovarian cancer who carry a BRCA mutation have a marked increase in progression-free survival (PFS) if they are given maintenance therapy with the poly(ADP)-ribose polymerase (PARP) inhibitor olaparib (Lynparza, AstraZeneca) following successful first-line chemotherapy." See also Maintenance Olaparib in Patients with Newly Diagnosed Advanced Ovarian Cancer (New England Journal of Medicine, 10-21-18).
• Missing a Cancer Diagnosis (Susan Gubar, Well, NY Times, 1-2-14) "Like many women, I misinterpreted the muted symptoms of ovarian cancer. Bloating, satiety, fatigue and constipation are often attributed to menopause, aging, indigestion, irritable bowel syndrome, depression, laziness or whining. My general practitioner prescribed half a cup of wheat bran, applesauce and prune juice every day. By the time a CT was ordered a year later, the cancer had progressed to an advanced stage that is treatable but not curable." As many as 28% of patients may be misdiagnosed.
• Don’t Miss These Signs of Ovarian Cancer (Sheryl Kraft, Next Avenue, 9-1-16) Abdominal bloating and a persistent 'full' feeling are common symptoms. Ovarian cancer can be missed “until the woman who is fearful says to her gynecologist ‘prove to me that I don’t have ovarian cancer.’”
• Ovarian Cancers: Evolving Paradigms in Research and Care (Institute of Medicine, download PDF of report for free)
• What's new in ovarian cancer research (American Cancer Society)
• New treatment option to reduce metastasis in ovarian cancer (Science Daily, 1-27-11) A new study could provide the foundation for a new ovarian cancer treatment option -- one that would use an outside-the-body filtration device to remove a large portion of the free-floating cancer cells that often create secondary tumors.
• News and feature stories about ovarian cancer (WebMD)
• Ovarian cancer (Medicine.net)
• Heart Drug Linked to Extra Years for Cancer Patients (Ron Winslow, WSJ, 8-24-15) A type of beta blocker is tied to more than four-year increase in survival for women with ovarian cancer, a retrospective (not randomized) study finds. Data from of 1,425 women with the tough-to-treat cancer found those who had taken a certain type of beta blocker lived more than four years longer on average than those who hadn’t been prescribed the drug. The women were taking the medicine to treat high blood pressure or another heart problem, not as part of their cancer treatment...."[B]eta blockers have side effects and more research is needed to see if the drugs’ benefits outweigh risks for cancer patients. In recent years, studies have shown that chronic stress promotes the growth and spread of ovarian and other cancers." ... "But difference between those taking a nonselective beta blocker—propranolol in essentially all cases—and those taking a selective version was much more dramatic: 94.9 months versus 38 months."
• Conversations: The International Ovarian Cancer Connection
• The risky surgery to remove a woman’s 132-pound tumor that grew by 10 pounds every week (Cleve R. Wootson Jr., WaPo, 5-4-18) The tumor (shown) had ballooned and stretched the patient's abdomen into a 3-foot-wide orb. It was the largest ovarian mucinous tumor Andikyan had ever encountered, benign only in the medical sense of the word. It didn't take the gynecologic oncologist long to recognize the growth for what it really was: A death sentence. The doctors at Danbury had only read about a handful of such extreme cases in medical journals. On surgery day, 25 different medical professionals were ready to proceed.
• Berardi, Luci. Chasing Rainbows, My Triumph Over Ovarian Cancer
• Gallelli, Antoinette. Ovarian Cancer: My Walk With It
• Gubar, Susan. Memoir of a Debulked Woman: Enduring Ovarian Cancer . After agreeing to undergo a radical, surgically difficult, potentially fatal treatment for ovarian cancer--removing as much tumor-ridden tissue as possible, reducing the load so chemotherapy could work on the rest--the famed feminist writes about her experience surviving the surgery and writing frankly about the female body. See her story in short in the Chronicle of Higher Education, also: A Feminist Professor's Closing Chapters , a misleading title, in that she does survive to write about it.
• Ingalls, Karen. Outshine - An Ovarian Cancer Memoir
• Joyce Wadler. Cured, My Ovarian Cancer Story (Plucky Cancer Girl Strikes Back, Vol. 2) Kindle
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ENDOMETRIAL AND UTERINE CANCER
• Living as an endometrial (uterine) cancer survivor
• Second cancers after endometrial cancer (American Cancer Society)
• What`s new in endometrial cancer research and treatment? (American Cancer Society)
• Hair Straighteners May Pose a Small Risk for Uterine Cancer, Study Finds (Roni Caryn Rabin, NY Times, 10-17-22) A national study suggests a link to this particular cancer among women who reported frequent use of the chemical products. The study did not establish a cause-and-effect relationship between hair straighteners and cancer of the uterus, a form of reproductive cancer that has been increasing in incidence among women in recent years, especially among Black women.
• Uterine Cancer Is on the Rise, Especially Among Black Women (Roni Caryn Rabin, NY Times, 6-17-22) Cancer of the uterus, also called endometrial cancer, is increasing so rapidly that it is expected to displace colorectal cancer by 2040 as the third most common cancer among women, and the fourth-leading cause of women’s cancer deaths. The mortality rate is highest among Black Americans. Women who have abnormal cycles and unusual bleeding throughout their lives are at highest risk: “It is the abnormality of the cycle that increases the risk of endometrial cancer, because of the dysregulation of hormones.”
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PANCREATIC CANCER
Signs and symptoms of pancreatic cancer may include: Back or belly pain; jaundice; unexplained weight loss; loss of appetite, indigestion, nausea, and vomiting; trouble digesting food; changes in bowel habits; swollen belly; abdominal discomfort and breathlessness.
• 7 Pancreatic Cancer Symptoms and Signs You Should Know (Tiffany Medina, Pancreatic Cancer Action Network)
• My Early Signs of Pancreatic Cancer (YouTube video, video, 28 minutes) Matthew's account of "How I Found Out I Had Pancreatic Cancer" is as good a personal description as I've seen.
• Pancreatic Cancer Doesn't Have to Be a Death Sentence (Suresh T. Chari, Opinion, MedPage Today, 11-13-23) Early detection is the key to increasing survival rates. It is critical that clinicians focus on identifying pancreatic cancer risk factors in their patients and recognize the often-subtle symptoms of disease earlier.
• Pancreatic Cancer Vaccine Shows Promise in Small Trial (Benjamin Mueller, NY Times, 5-10-23) Using mRNA tailored to each patient’s tumor, the vaccine may have staved off the return of one of the deadliest forms of cancer in half of those who received it.
• Looking for Early Warning Signs of Pancreatic Cancer (Jane E. Brody, Personal Health, NY Times, 2-7-22) Scientists are exploring whether the onset of diabetes may in some cases herald the existence of one of the most deadly of all cancers.
• Author Judy Blume: “There Is Hope” After Husband’s Diagnosis (Judy Blume, PanCAN. 6-1-21) Judy Blume vividly brings to life what happened to her husband, George Cooper, from the evening she saw that he was yellow with jaundice through diagnosis and treatment, highly recommending that people who develop this cancer immediately get in touch with PanCAN, which provides free services and support for patients with pancreatic cancer.
• Alex Trebek’s ‘near remission’ story serves as a reminder: Beware celebrity health news (Mary Chris Jaklevic, Health News Review, 6-5-19) In People magazine’s latest cover story, Alex Trebek said his advanced pancreatic cancer is in “near remission.” People portrayed this as a dramatic turnaround. Instead of fact-checking, there was cheerleading. Largely missing in the coverage were cautions that even complete remission does not equal cure, and tumor shrinkage does not always correlate with longer life. Read about the frequent flaws in covering celebrity cancer news. "It’s a mistake to view emotional anecdotes as evidence of a benefit." See also What to Know About Alex Trebek’s Incurable, Stage 4 Pancreatic Cancer (Julie Mazziotta, People, 3-7-19)
• Signs and symptoms of pancreatic cancer (American Cancer Society)
• Surgical robot can reduce pain from pancreatic cancer surgery (University of Chicago Medicine) All forms of pancreatic cancer call for aggressive treatment. The standard operation is legendary, famously complex: pancreaticoduodenectomy (the Whipple procedure).
• Mission Possible: How She Overcame Pancreatic Cancer (Health News, George Washington University Hospital, Spring 2020) Several months of testing revealed that she had a pancreatic neuroendocrine tumor--a less-common and slower-growing type of pancreatic cancer, though it has the potential to spread. She was a candidate for the “Whipple procedure” – a complex, highly specialized surgery and the only known possible cure for her condition.
• The Whipple Procedure (University of Chicago Medicine) Transcript, frequently asked questions, and illustration. The procedure "includes removal of about half of the pancreas, part of the small intestine, the gallbladder, part of the bile duct, in some cases part of the stomach, plus careful and complete removal of all nearby lymph nodes. After taking out the cancerous tissues with a wide margin, the surgeon reconnects the remaining pancreas and digestive organs so that pancreatic digestive enzymes, bile, and stomach contents flow into the small intestine, enabling digestion."
• New treatment improves pancreatic cancer survival rate for the first time in a decade (Bec Crew, Science Alert, 6-10-16) At the world’s biggest cancer drug conference over the weekend, it was announced that a new combination of chemotherapy drugs has pushed the five-year survival rate from 16 percent to 29 percent of patients.
• Pancreatic Cancer Action Network Advance Research, Support Patients, Create Hope
• The Lustgarten Foundation for Pancreatic Cancer Research Funding research on pancreatic cancer.
• Pancreatic Cancer (Mayo Clinic)
• Pancreatic Cancer (American Cancer Society)
• In the fog of loss: A reflection on love, life and death (Joyce Maynard, Stanford Medicine, Summer 2017) An excerpt from her book The Best of Us: A Memoir. Married a second time in her late fifties, Maynard and her husband get the diagnosis that he has pancreatic cancer. This pieces describes what their decision to fight the cancer aggressively entails, and what she would do differently, in retrospect. "If, tomorrow, or next week, or anytime in the next 30 years, I receive a diagnosis of pancreatic cancer, with the option existing for surgery, I would never elect to undergo the Whipple procedure. Whatever slim prospect of survival it might offer does not offset, for me, the countless complications, indignities and virtually nonstop pain I witnessed in my husband."
• The Day I Found Out My Life Was Hanging by a Thread (Matt Bencke, Wired, 8-24-17). He was thin and fit when he started feeling first back pain and then, just "off." His doctor said nothing was wrong. He ultimately checked himself into an emergency room, knowing his doctor was wrong. Learning his life hangs by a thread made him take a leave from AI, the artificial intelligence tech firm he founded, to enjoy his wife and children while he could.
• Small Advances Against Pancreatic Cancer (Jane E. Brody, NY Times, 6-7-10)
• Pancreatic Cancer (Wikipedia entry--always check for accuracy, as users change often, but you'll find lots of links to articles)
• PANCREAS-ONC An unmoderated discussion list for patients, friends, researchers, and physicians, to discuss clinical and nonclinical issues and advances pertaining to Pancreatic cancer. (The Pancreatic Cancer Support & Information eCommunity)
• Pancreas Chat (unmoderated forum to discuss pancreatic cancer)
• Hirshberg Foundation for Pancreatic Cancer Research
• National Pancreatic Cancer Foundation
• National Pancreas Foundation
• Pancreatic Cancer Action Network. See also Clinical Trial Finder.
• Pancreatic Cancer Alliance
• Pancreatica: Confronting Pancreatic Cancer. Read stories of patients at Stories of Inspiration
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Prostate cancer
Warning: There are articles here for and against broader screening tests for prostate cancer. Do your homework: read both sides of the issue and decide what your own risk profile probably is.
• Lloyd Austin isn’t talking about his prostate cancer. But it could make a difference for other men if he did. (Renée Graham, Boston Globe, 1-25-24) Whether benign or malignant, prostate issues are common in men especially as they get older. (Austin is 70, Charles is 75.) According to the Centers for Disease Control and Prevention, it is the second most common cancer among men nationwide. And when detected and treated early, the five-year survival rate is nearly 100 percent, according to the American Cancer Society.
• Francis Collins: Why I’m going public with my prostate cancer diagnosis (WashPost, 4-12-24--a condensed summary of the article)
"About 40 percent of men over age 65 — I’m 73 — have low-grade prostate cancer. Many of them never know it, and very few of them develop advanced disease. When I heard the diagnosis was now a 9 on a cancer-grading scale that goes only to 10, I knew that everything had changed. If that cancer had already spread to my lymph nodes, bones, lungs or brain, it could still be treated — but it would no longer be curable.
"Later this month, I will undergo a radical prostatectomy — a procedure that will remove my entire prostate gland. While there are no guarantees, my doctors believe I have a high likelihood of being cured by the surgery."
Four decades ago, his father was treated with "a hormonal therapy that might not have been necessary and had a significant negative impact on his quality of life. Because of research supported by NIH, along with highly effective collaborations with the private sector, prostate cancer can now be treated with individualized precision and improved outcomes.
"As in my case, high-resolution MRI scans can now be used to delineate the precise location of a tumor. When combined with real-time ultrasound, this allows pinpoint targeting of the prostate biopsies. My surgeon will be assisted by a sophisticated robot named for Leonardo da Vinci that employs a less invasive surgical approach than previous techniques, requiring just a few small incisions....If my cancer recurs, the DNA analysis that has been carried out on my tumor will guide the precise choice of therapies....advances in genomics have transformed the diagnosis and treatment of cancer."
"The five-year relative survival rate for prostate cancer is 97 percent, according to the American Cancer Society, but it’s only 34 percent if the cancer has spread to distant areas of the body."
• See also Francis Collins Discloses His 'Aggressive' Prostate Cancer Diagnosis (Mike Bassett, MedPage Today, 4-12-24) The 5-year survival rate for prostate cancer that has metastasized to other parts of the body is just 34%. Collins' scan showed the cancer had not spread outside the primary tumor, and he is scheduled to undergo a radical prostatectomy, which his doctors said has a high likelihood of being curative.
"Early detection really matters, he added, and when combined with active surveillance, can identity those high-risk cancers like his, while leaving others alone. However, he also observed that current screening guidelines can leave men and their physicians confused. The American Urological Association and Society for Urologic Oncology suggest that screening should begin earlier than age 55--especially for men like Collins with a family history of prostate cancer, and African-American men who have a higher prostate cancer risk.
• 10 important questions to ask if you’re diagnosed with prostate cancer (Naeem Rahman, Washington Post, 1-5-18) Among them (with explanations):
1. What is my Gleason score?
2. Is there a nodule expressing my cancer?
3. What is my PSA density?
6. Is there perineural invasion?
7. Should any imaging tests be performed?
8. What are my options if my cancer is extraprostatic?
10. What are the side effects of treatment?
• Prostate Cancer Is Not Just an 'Old Man's Disease' (Howard Wolinsky, MedPage Today, 9-2-23) Gabe Canales, author of Unexpected Diagnosis: Prostate Cancer and the Wake-Up Call to Live Healthier and Happier (2022) was diagnosed incidentally while investigating a problem with low testosterone. Instead, he found out he had what most consider "an old man's disease." He found that active surveillance, close monitoring of cancer, was an option to help men avoid the potential side effects of aggressive treatment, including erectile dysfunction and urinary incontinence.
In the U.S., the average 5-year survival rate for prostate cancer is between 95% and 100% for men ages 40-80. For younger men, the 5-year survival rate is lower. For men ages 25-34, it's 80%. For men ages 20-29, it's 50%. For men ages 15-25, it's 30%.
Stacy Loeb, MD, a urologist at New York University Langone, reported that her study suggests: "Greater consumption of healthful plant-based foods is associated with modest improvements in [quality-of-life] domains among patients with prostate cancer."
In 2010, Canales decided to spread the word by forming a charity called Blue Cure aimed at increasing awareness of prostate cancer in younger men. Read this article for additional practical information.
• Prostate cancer (National Cancer Institute) Gateway to many useful links about prostate cancer.
• Aggressive Prostate Cancer Linked to Five Types of Bacteria in Study (Nina Massey, Bloomberg, 4-19-22) Researchers have identified five types of bacteria that are linked to aggressive prostate cancer. The bacteria was common in urine and tissue samples from men with the condition, a new study found. It is hoped the findings could help pave the way for treatments that could target this bacteria and slow or prevent the development of aggressive disease. Scientists do not yet know how people pick up the bacteria, or whether they are causing the disease. Project lead Professor Colin Cooper from the University of East Anglia's (UEA) Norwich Medical School, said: "We already know of some strong associations between infections and cancer."
• For older black men, a lifesaving push for more prostate cancer tests (Justin Wm. Moyer, WaPo, 1-5-18) African American men are more likely than white men to develop and die of prostate cancer, and there is an ongoing debate about when tests should be given to them. Sixty percent of Prince George's County doctors' patients are African American, and they recommend that every black man older than 50 be screened, while the federal government recommends only that screening be discussed with patients. High-risk men "need to be screened. Primary-care doctors shouldn’t be confused by the current recommendations.” Read the whole article before you decide what's best for you!
• A Dozen Eggs (Yvonne H. Sada, Journal of Clinical Oncology, 8-24-21) For Evelyn, a transgender patient, taking estrogen might help her prostate cancer but will definitely damage her gender dysphoria.
• Is prostate cancer screening right for you? Let’s do the numbers (Marie McCullough, Philly.com, 5-8-18) Prostate cancer screening has risks that may outweigh the benefits. To help men and their doctors find a balance, the influential U.S. Preventive Services Task Force on Tuesday released its latest recommendations with a graphic depicting the trade-offs.
• Lumpers vs Splitters: Categorizing Prostate Cancer (Howard Wolinsky, MedPageToday, 3-19-23) Should very low-risk and low-risk be combined into one? All patients with LR and VLR are candidates for active surveillance (AS). But the VLR group can qualify for less intense monitoring, meaning fewer tests spread apart at longer intervals.
• A win for readers: coverage of new prostate cancer screening guidelines focuses on shared decision making (Richard Hoffman, HealthNewsReview, 5-11-18) The Task Force’s qualified support for screening disarmed some of its most vehement critics, including the American Urological Association (AUA). "The AUA commended the Task Force for now being aligned with practice guidelines issued by the AUA and other major physician groups. The Task Force emphasized that men could understandably have markedly different perspectives about the same data on benefits and harms, which is why the group supports individualized decision making. The ideal scenario is shared decision making, a collaborative process between patients and clinicians based upon the best available clinical evidence and the values and preferences of an informed patient."
• Prostate Cancer Screening Final Recommendation (U.S. Preventive Services Task Force, May 2018)
• Recommended for Primary Care Practice (U.S. Preventive Services Task Force, May 2018)
• US panel leaves prostate screening up to men, their doctors (Lindsey Tanner, AP, 5-8-18) Whether to get screened for prostate cancer is a question that men aged 55 to 69 should decide themselves in consultation with their doctors, according to finalized guidance issued Tuesday by an influential panel of health care experts. New evidence suggests that PSA blood tests can slightly reduce the chances of dying from the disease for some men, so those decisions may be a little easier. Though screening can sometimes lead to drastic, needless treatment, the panel says that can sometimes be avoided with close monitoring when cancer is detected.
• A Light at the End of the Tunnel for Low-Risk Prostate Cancer? ( Howard Wolinsky, MedPage Today, 9-2-22) The MUSIC model might improve quality of life and prevent overtreatment
• Knowing Your Options: A Decision Aid for Men With Clinically Localized Prostate (Agency for Healthcare Research and Quality, or AHRQ) Excellent video explanation (on p. 2).of the prostate's position and function in the male anatomy, and good explanations of screening tests, what their results mean, and what your options are.
• On My Way to Hospice Care, Immunotherapy Saved My Life (David Kensler, as told to Jo Cavallo, The ASCO Post, 8-25-17) "Two years ago, I was on my way to hospice care after numerous treatments, including surgery, chemotherapy, and radiation therapy failed to stop the progression of my stage IV castration-resistant prostate cancer. A last-minute call from my oncologist about a phase I trial of combination immunotherapy led to treatment that literally saved my life."
• Prostate Cancer Foundation. See Understanding prostate cancer
• Prostate Cancer Diagnosis and Staging (Medscape)
• From Acupuncture to Zinc: The Role of Complementary Therapies in Prostate Cancer (listen to speech by Dr. Lynda Balneaves, Prostate Cancer Canada) Along the side are links to speeches on many aspects of prostate cancer and its care.
• First Major Trial of Keytruda for Prostate Cancer Shows It Works, But Only for a Minority Of Men (Victoria Forster, Forbes, 6-3-18) The first major clinical trial to test immunotherapy in men with advanced prostate cancer has shown promising results, albeit in a small percentage of patients. “As with many other cancer types, many people don't benefit. We have evidence that people with DNA repair mutations do respond to the treatment, but more work is needed to confirm this," said de Bono.
• Facing Prostate Cancer (Prostate Cancer Canada). Special pages for Young Men & Prostate Cancer, Gay & Bisexual Men and Prostate Cancer, Prostate Cancer in the Aboriginal Community, Black Men and Prostate Cancer, Prostate Cancer in the Transgender Community. You can subscribe to their newsletter.
• The new recommendations for prostate cancer screenings are a bad deal (Vinay Prasad, STAT News, 4-11-17) "There is no proof that PSA screening extends your life, improves the years you have, or reduces your risk of dying."
"PSA testing reduces the risk of dying of prostate cancer, but there is no evidence it reduces the risk of dying."
"PSA screening, then, is like a dentist applying a sealant to one of your 32 teeth, and that sealant reduces the risk of losing the treated tooth by 20 percent. What about the other teeth? Many experts believe the sealant has no effect — not positive or negative — on the other teeth. Others, including me, believe that the sealant slightly increases the risk of losing one of the untreated teeth, which would offset the small 20 percent benefit for the treated tooth."
Rating increases from D to C. For a different view, see New Official Prostate Cancer Screening Guidelines Announced: Too Little, Too Late? (Benjamin Davies, Forbes, 4-11-17) Says the author, "I read it as the following: get a PSA test if you understand the benefits and risks of screening for prostate cancer. There is a modest benefit for some and a modest risk for some--proceed with eyes wide open." After you read page 1, click to read page 2.
• In Congress, a doctor becomes a cancer patient — and preaches candor (Erin Mershon, STAT News, 9-20-17) Phil Roe, a Republican Congressman from Tennessee, heads the GOP Doctors Caucus in Congress. After his diagnosis of prostate cancer, he was quick to sit down with his physicians in Kentucky and D.C. and was vocal about the diagnosis with his constituents about both his diagnosis and treatment--hoping to encourage others to seek help. "Prostate cancer is one of the most common types of cancer in men, and most who are diagnosed with it do not die from it. The five-year survival rate is about 99 percent, according to the American Cancer Society. They estimate there are some 2.9 million men living in the U.S. who have at some point been diagnosed with the disease."
• A Conversation About Prostate Cancer (Leonard Lopate's public radio interview with Dana Wells, author of the Times column, Prostate Cancer Journal
• Prostate Cancer Treatment Can Raise Dementia Risk (Nicholas Bakalar, NY Times, 10-13-16) "Reducing testosterone levels with androgen deprivation therapy, or A.D.T., is a common treatment for prostate cancer. But a new study has found that it more than doubles the risk of dementia....This was a retrospective study and therefore cannot prove cause and effect. Still, low testosterone levels have been shown to increase the chance of cardiovascular disease, a known risk factor for dementia."
• Vasectomy May Not Raise Prostate Cancer Risk After All (Don Rauf, HealthDay, 9-19-16) "A large, new study challenges previous research that suggested vasectomies might increase the risk of prostate cancer or dying from it. In the latest finding, researchers found no connection between vasectomies and overall risk of prostate cancer, or of dying from the disease.
• Ben Stiller’s misguided prostate cancer recommendations aren’t based on evidence (Kevin Lomangino, HealthNewsReview, 10-5-16). This review of what Ben Stiller wrote about prostate cancer also happens to cover what men should know when considering screening options.
• Single Mid-Life PSA Predicts Lethal Prostate Cancer (Wayne Kuznar, Medpage Today, 6-17-16) A single measurement of serum prostate-specific antigen (PSA) performed in midlife is a strong predictor for the subsequent development of lethal prostate cancer, researchers said. The finding could be used to tailor screening intervals to the magnitude of risk determined by the baseline PSA level, the researchers concluded.
• Affected by prostate cancer? US TOO International Prostate Cancer Education & Support Network ("To know the road ahead ask those coming back")
• Prostate Cancer: Informed Decisions or Information Overload? (Howard Wolinsky, Medpage Today, 6-17-16) To biopsy, or not to biopsy -- a Shakespearean dilemma.
• Zero, the project to end prostate cancer. Learn about co-pay assistance for patients with metastatic disease
• Best Practices (National Alliance of State Prostate Cancer Coalitions). See your state coalition.
• Taking on prostate cancer (Andy Grove, Fortune Magazine, 5-13-96). A personal story that clearly explains the many options when your PSA is higher than 4.
• To Test or Not to Test? To Treat or Wait and See? (Aliyah Baruchin, Columbia Medicine, Spring 2013) In prostate cancer, seeking two holy grails: better risk assessment and improved treatment. Urologist Mitchell Benson: "... before PSA screening, the most common presentation was a patient with metastatic disease....metastatic disease is now rare and the death rate has been reduced by 40 percent. What we have to do is find ways of continuing to have a death rate reduced by 40 percent while not treating people who don’t need treatment. That has to be the goal.”
• New Data on Harms of Prostate Cancer Screening (Tara Parker-Pope, Well, NY Times, 5-21-11) ",,,at best, one man in every 1,000 given the P.S.A. test may avoid death as a result of the screening, while another man for every 3,000 tested will die prematurely as a result of complications from prostate cancer treatment and dozens more will be seriously harmed."
• Fall in PSA Screening Resulting in More Advanced Disease (Kate Johnson, Medscape, 3-24-16) "By recommending uniformly against PSA screening, we may be throwing out the baby with the bathwater."
• Too Few Men With Low-Risk Prostate Cancers Get 'Watch and Wait' Approach (Randy Dotinga, Health Day, 6-30-15)
• Advantages and Disadvantages of Various Treatments for Prostate Cancer (HealthCommunities.com) Options covered: Active surveillance, radical prostatectomy, external beam radiation therapy (EBRT), brachytherapy (internal radiation therapy--implanting tiny pellets). Not covered: biologic/immunotherapy, chemotherapy, cryosurgery/cryotherapy, cyberknife (form of stereotactic body radiation therapy (SBRT) that robotically delivers high doses of radiation directly to the cancerous prostate), precision-focused ultrasound, etc. (See ProstateCancer911, a doctor's site, if only to learn what to research and ask about.
• Quality of life meets cure for prostate cancer treatment (University of Michigan Health System, EurekAlert, 5-11-16) Vessel-sparing radiation combined with a better understanding of prostate anatomy can decrease sexual dysfunction
• Living With Cancer: Collateral Damage (Susan Gubar, Well, NY Times, 8-27-15) "Sexual dysfunction and incontinence in prostate cancer survivors underscore a quandary that shadows oncology....procedures that prolong lives also impair them. Yet cancer patients who must forfeit quality of life to gain quantity of life rarely receive adequate warning before treatment or guidance afterward."
• Why Doctors Shouldn’t Be Punished for Giving Prostate Tests (H. Gilbert Welch and Peter C. Albertsen, NY Times, 1-7-16) Because doctors can’t reliably identify which cancers will become lethal, PSA screening has led a lot of men — our 2009 estimate was over one million since the test was introduced in 1987 — to be treated for a cancer destined to never bother them. And treatment frequently leads to impotence and can cause incontinence and bowel problems. Lots of people are hurt; few are helped. This is why the United States Preventive Services Task Force recommends against PSA screening. "Medicare should not penalize doctors for ordering PSA tests, but it should make sure it is not giving the test away free. Requiring men to bear the small cost of the test is not a punishment, it’s a motivation for them to consider the screening decision more carefully."
• One Man's Story, on Jennings' experience with prostate cancer
• Comparative effectiveness of therapies for clinically localized prostate cancer (AHRQ report)
• Possible link found between radiotherapy for prostate cancer and risk of secondary cancers (BMJ press release, 3-2-16) But the absolute rates of these secondary cancers remain low. Concern about second malignancies "should not, however, stand in the way of an effective and well studied treatment being given to men with higher grade, lethal prostate cancer for whom the potential benefit simply dwarfs the risk."
• Phoenix 5 (extremely useful website written by men with prostate cancer and the women in their lives)
• Getting Angry About Prostate Cancer Dana Jennings, NY Times Health section, 12-8-06).
• A Rush to Operating Rooms That Alters Men’s Lives (Dana Jennings, NY Time, 8-30-10)
• Scientists Seek to Rein In Diagnoses of Cancer (Tara Parker-Pope, NY Times, 7-29-13) But even after years of aggressively treating conditions like seemingly precancerous lesions and early-stage cancers — like ductal carcinoma in situ, small thyroid tumors and early prostate cancer-- there has not been a commensurate reduction in invasive cancer, suggesting that overdiagnosis and overtreatment are occurring on a large scale.
• High-Fat Diet May Fuel Spread of Prostate Cancer (Gina Kolata, NY Times, 1-16-18) "When prostate cancers lose a particular gene, they become tiny fat factories, a team at Beth Israel Deaconess Medical Center in Boston reported in a paper published in Nature Genetics. Then the cancers spread from the prostate, often with deadly effect. Prostate cancers that have not lost that gene also can spread, or metastasize — in mice, at least — but only if they have a ready source of fat from the diet."
• A Return to Normalcy, for All to Admire (Dana Jennings, NY Times, 5-24-10)
• Post prostate cancer surgery: Lessons learned in prostate situation (Bill Arnold and others)
• Sex After Prostate Surgery (Tara Parker Pope, NY Times, 1-14-08)
• A Conversation About Prostate Cancer (Leonard Lopate's public radio interview with Dana Wells, author of the Times column, Prostate Cancer Journal.
• Should Older Men Pass on Getting Prostate Cancer Treatment? (Alexandra Sifferlin Health & Family, Time magazine, 5-23-13). "Older men with multiple underlying health problems should carefully consider whether they should treat these tumors aggressively, because that treatment comes with a price,” said lead study author Dr. Timothy Daskivich, a UCLA Robert Wood Johnson fellow.
• Scientists Seek to Rein In Diagnoses of Cancer (Tara Parker-Pope, NY Times, 7-29-13) The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidental findings detected during medical scans that most likely would never cause a problem. The concern is that since doctors do not yet have a clear way to tell the difference between benign or slow-growing tumors and aggressive diseases with many of these conditions, they treat everything as if it might become aggressive. As a result, doctors are finding and "overtreating" scores of seemingly precancerous lesions and early-stage cancers — like ductal carcinoma in situ (DCIS), Barrett’s esophagus, small thyroid tumors, and early prostate.
• Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, by Patrick C. Walsh and Janet Farrar Worthington
• Prostate and Cancer: A Family Guide To Diagnosis, Treatment and Survival, by Sheldon Marks
• Prostate Cancer and the Veteran by Tom Benjey
• Proton beam therapy – radiation oncology group weighs in on the evidence (and lack thereof) (Gary Schwitzer, HealthNewsReview). For certain cancers, this technology is valuable. "But for the granddaddy of applications – the one that pays the bills when the uncommon conditions don’t – prostate cancer – ASTRO states that “the comparative efficacy evidence is still being developed."
• Is the extra cost for proton beam therapy worth it? Massachusetts General Hospital conducting a large, long-awaited test of whether a controversial cutting-edge proton beam therapy is more effective than standard radiation treatment for prostate cancer. The expensive therapy is being used across the country and in some cases advertised directly to the general public before it has been deemed superior to standard radiation treatment, which costs about half as much. Discusses pros and cons of this approach to treatment.
• Proton-Beam Therapy for Cancer Gets Renewed Attention (Denise Roland, WSJ, 5-16-16) Less costly, compact machines are rekindling demand from hospitals. 'Justin Bekelman, a radiation oncologist at the Hospital of the University of Pennsylvania, which has been using proton-beam therapy since 2010, said the treatment had “tremendous potential, but we haven’t finished our work to demonstrate what it can do.” He added: “I can never imagine a world without proton therapy at this point, but I’m not convinced it’s better for everything we do.”'
• Is proton therapy the ‘magic bullet’ for cancer? HealthNewsReview gives one star (out of five) to a CNN story on this topic, and the summary of its reasons for that low rating is informative.
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Rarer types of cancer
Dealing with a rare cancer (whatever body part it starts in) is a subject unto itself, because not everyone will recognize it or know how to deal with it.
• What One Person’s Love Can Do (Debbie Brodsky's DMB Pictures video). Amy Wood noticed that her otherwise healthy young son’s left eye was drifting inward and took him to their pediatrician, who told them that they needed to get an MRI right away. He thought it was a brain tumor. Amy’s son Alex was diagnosed with a brain tumor called a craniopharyngioma. Though operable and “benign,” the amount of daily and life-altering procedures just to survive made day-to-day living an immense challenge. She started the Raymond A. Wood Foundation, a parent-led, rare disease patient advocacy organization.
• Adrenocortical Carcinoma Outcomes Are Improving (Scott Harris, MedPage Today, 4-18-22) Survival rates for ACC have improved since 2007. Immunotherapy and other new treatments are presumed to play a role in the trend. Genetic counseling and multidisciplinary care are recommended.
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer (NY Times, 2-19-15). The neurologist who wrote “The Man Who Mistook His Wife for a Hat" and other books learns that his ocular melanoma has metastasized in the liver and, at 81, he learns that he may not see 82.
• Breast Implant Recalled After Link to More Rare Cancer Cases (AP, NY Times, 7-24-19) Breast implant maker Allergan Inc. issued a worldwide recall Wednesday for certain textured models after regulators alerted the company to a heightened cancer risk with the devices. New information showed Allergan's Biocell breast implants with a textured surface were tied to the vast majority of cases of a rare form of lymphoma. The move follows similar action in France, Australia, Canada and other nations. The FDA is not recommending women with the implants have them removed because the cancer is so rare, but say they should check with their doctor if they have symptoms, which include pain and swelling.
• Mind Over Manners (Kindle). Biographer Laura Claridge's brief (50-page) account of her ten-year struggle with a rare brain cancer, Primary Central Nervous System Lymphoma.
• Gastrointestinal Carcinoid Tumors (American Cancer Society fact sheet)
• Rare skin cancers (AboutHealth). Cutaneous T-cell Lymphoma, Merkel Cell Carcinoma, Kaposi Sarcoma, Sebaceous Gland Carcinoma, Dermatofibrosarcoma Protuberans.
• Every Day I Fight, a memoir by sports broadcaster Stuart Scott, who died of a rare appendiceal cancer
• PMP Research Foundation to find a cure for Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM). See also Turned away from five clinical trials, a cancer patient waits for one that will take him (Rebecca Robbins, Damian Garde, and Adam Feuerstein, STAT, 2-28-2020) Only when a tumor caused his appendix to erupt, did Todd Mercer learn that he had stage 4 cancer of the appendix. A lot of clinical trials are designed to enroll only people whose cancer originated in a particular organ. It won’t do most of them any good to collect data on someone with an 'orphan disease" or a disease whose progression is difficult to measure.
• Oropharyngeal cancer, a form of throat cancer that targets the tonsils and the back of the tongue. HPV Cancer on the Rise (Peter Jaret, AARP the Magazine, Oct./Nov. 2016) More and more men — often healthy, in their 40s to 60s — are showing up with a form of throat cancer that targets the oropharynx. Oncologist Maura Gillison was one of the first researchers to suspect that the cancers were being caused by an unexpected culprit: human papillomavirus, or HPV, the same virus that causes cervical cancer in women. Researchers are now convinced that HPV causes most oropharyngeal cancers; the latest findings show that 3 out of 4 cases of the disease are HPV-positive. HPV can be transmitted through all forms of sex — oral, vaginal and anal — and may also be transmitted through deep kissing, according to the Centers for Disease Control and Prevention (CDC). HPV is also linked to anal and penile cancer, as well as genital warts.
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Sarcomas, including Ewing Sarcoma
• Sarcoma Alliance
• Sarcoma support groups
• Ewing Sarcoma Treatment (PDQ) (National Cancer Institute) Ewing sarcoma is a rare type of tumor that forms in bone or soft tissue. Signs and symptoms include swelling and pain near the tumor.
• The Sarcoma Alliance
• After Years of Tumors, Growing a Baby Instead (Julia Michie Bruckner, Narratively, 6-18-18) Doctors said I probably wouldn't live to see my child grow up, but I still wanted to be a mom.
• I Was All Set to Become the Most Popular Guy in the Cancer Ward. Then I Met My Nemesis: Ben. (Luke Millins, Washingtonian, 12-11-16) Ewing sarcoma "often migrates to the lungs, where it can become fatal. The good news: We’d caught the cancer before it spread." "But my diagnosis came with bad news, too: Ewing sarcoma has a nasty history of returning even after its tumors have been excised. I was looking at a year of chemo."
• We Needed More Significant Others (Logan Ury, Modern Love, NY Times, 1-8-2021) Scott had ankle pain that wouldn’t go away. It was finally diagnosed as osteosarcoma, a rare form of bone cancer that afflicts some 800 Americans a year. A cancer diagnosis in the midst of the pandemic led to their improvising a wedding and joining a commune, where their family of two became 14.
• Ewing Sarcoma Treatment (PDQ) (National Cancer Institute) Ewing sarcoma is a rare type of tumor that forms in bone or soft tissue. Signs and symptoms include swelling and pain near the tumor.
• This man was teased for his ‘beer belly.’ It turned out to be a 77-pound cancerous tumor. ( Lindsey Bever, WaPo, 11-27-18) (Warning: This story contains a graphic image of a 77-pound tumor.) When he first mentioned the issue to a physician, he said, the doctor brushed him off, telling him some people just carry weight differently than others.
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Kidney cancer
• Kidney cancer (NCI)
• Kidney Cancer (National Cancer Institute)
• Kidney Cancer (American Cancer Society)
• Kidney Cancer (Steve Dunn's Kidney Cancer page)
• KIDNEY-ONC (an e-mail discussion group for patients with kidney cancer, their family and friends)
• Lessons of a $618,616 Death (Amanda Bennett, with Charles Babcock, for Bloomberg Businessweek 3-4-10). Early discovery of kidney (collecting duct) cancer gave Bennett's husband extended years of life. "The first tool for fighting kidney cancer is usually the one used since medieval times: the knife, or its technological equivalent. If a tumor is removed early enough, before it flings microscopic cells into the bloodstream that can implant in other organs, surgery is close to a cure."
• TED video of e-Patient Dave. Hear what he says about patient empowerment: "Well, my doctor prescribed a patient community, ACOR.org, a network of cancer patients, of all amazing things. Very quickly they told me, "Kidney cancer is an uncommon disease. Get yourself to a specialist center. There is no cure, but there's something that sometimes works -- it usually doesn't -- called high-dosage interleukin. Most hospitals don't offer it, so they won't even tell you it exists. Don't let them give you anything else first." Read the transcript. The power of patient networks!
• IL-2 for Kidney Cancer Offers Cure, but Needs to Be Given by Experts (Pam Harrison, Medscape, 5-12-14) "Although high-dose interleukin-2 (HDIL-2) is currently not used often in the treatment of metastatic renal cell carcinoma (mRCC), the toxicity can be managed by expert centers, and it offers the only potentially curative treatment for patients with advanced disease." A search will turn up several entries on this topic.
• New drug improves outcome in treatment resistant kidney cancer (Dana-Farber Cancer Institute, as reported on Science Daily, 9-28-15)
• Is the Cure for Cancer Inside You? (Daniel Engber, NY Times Magazine, 12-21-12) “The immune system’s job is to recognize the signs of danger and then with very exquisite precision to mobilize antibodies” and T-cells “that very, very precisely bind to individual targets.” Once that system locks on to its target, it can make adjustments, too, shaping the response to match the contortions and mutations of a tumor in real time. “It’s a therapy that lives,” Wolchok says, “rather than a medicine that passes in and out of the system.”
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Head and neck and oral and throat cancers
"Head and Neck Cancer is the term given to a variety of malignant tumors that may occur in the head and neck region, namely the oral cavity, the pharynx (throat) paranasal sinuses and nasal cavity, the larynx, thyroid, and salivary glands as well as lesions of the skin of the face and neck and the cervical lymph nodes." (SPOHNC)
• Slideshow guide to head and neck cancers (Web MD) Click on right to move through 18 slides showing what each type of cancer looks like, starting with a schematic illustration showing where the various types occur.
• Support for People with Oral and Head and Neck Cancer (SPOHNC, pronounced SPAWNK, a self-help nonprofit organization) an important support group, with many local chapters. See literature on the website, an information page (or call 1-800-377-0928) and blog posts. They have a newsletter, support groups, recommended products, etc.There are often swallowing challenges, so ask about the two cookbooks for patients and survivors.
• What is throat cancer? (HealthLine) Throat cancer refers to cancer of the voice box, the vocal cords, and other parts of the throat, such as the tonsils and oropharynx. Throat cancer is often grouped into two categories: pharyngeal cancer and laryngeal cancer. The pharynx is the hollow tube that runs from behind your nose to the top of your windpipe. Pharyngeal cancers that develop in the neck and throat include: nasopharynx cancer (upper part of the throat), oropharynx cancer (middle part of the throat), and hypopharynx cancer (bottom part of the throat). Laryngeal cancer develops in the larynx. (As a friend has learned, recovery from treatment for throat cancer can take a year. So plan accordingly!)
• What Causes Head and Neck Cancers? (Terese Winslow, CDC) And what can you do to reduce your risk. If you are 26 years old or younger, talk to your doctor about HPV vaccines. Don't smoke or use smokeless products. Use lip balm that contains sunscreen, wear a wide-brimmed hat when outdoors, and avoid indoor tanning.Visit the dentist regularly. Checkups often can find head and neck cancers early, when they are easier to treat.
• Head and Neck Cancer (Patient Version) (National Cancer Institute) Information provided at several levels, often illustrated schematically.
---Q&A fact sheet of various cancers of the head and neck
---PDQ treatment summaries for hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, metastatic squamous neck cancer with occult primary treatment, nasopharyngeal cancer, oropharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer.
• Oropharyngeal cancer, a form of throat cancer that targets the tonsils and the back of the tongue. HPV Cancer on the Rise (Peter Jaret, AARP the Magazine, Oct./Nov. 2016) More and more men — often healthy, in their 40s to 60s — are showing up with a form of throat cancer that targets the oropharynx. Oncologist Maura Gillison was one of the first researchers to suspect that the cancers were being caused by an unexpected culprit: human papillomavirus, or HPV, the same virus that causes cervical cancer in women. Researchers are now convinced that HPV causes most oropharyngeal cancers; the latest findings show that 3 out of 4 cases of the disease are HPV-positive. HPV can be transmitted through all forms of sex — oral, vaginal and anal — and may also be transmitted through deep kissing, according to the Centers for Disease Control and Prevention (CDC). HPV is also linked to anal and penile cancer, as well as genital warts.
• How Is Immunotherapy Changing the Outlook for Patients with Head and Neck Cancer? (Andrew Sikora, Cancer Research Institute) "Head and neck cancer is highly curable—often with single-modality therapy (surgery or radiation)—if detected early. More advanced head and neck cancers are generally treated with various combinations of surgery, radiation, and chemotherapy. With any treatment plan, the goal is not only to remove the cancer, but also to preserve the functions of the structures involved in speaking, swallowing, and expression. There are currently three approved immunotherapy options for head and neck cancer. Head and neck cancer patients with advanced disease should consider participating in an immunotherapy clinical trial if eligible.
• Why is a dental visit needed before radiotherapy for head and neck cancer (Hillel Ephros, ShareCare) In head and neck cancer, the jawbone and the glands that produce saliva are often damaged by radiation. ... There may be ways to manage dental problems that come up after radiation therapy, but nothing is as safe and predictable as prevention, even if it means the removal of teeth before radiation therapy.
• Pharmacological and Other Interventions for Head and Neck Cancer Pain: a Systematic Review (Patrick B. Trotter, Lindsey A. Norton, et al., Journal of Oral and Maxillofacial Research, Oct.-Dec. 2012, on PMC) Pain is a common complication in head and neck cancer
• Twelve Patients: Life and Death at Bellevue Hospital by Eric Manheimer (inspiration for the NBC drama "New Amsterdam"). A memoir from Bellevue's former medical director, which looks poignantly at patients' lives and reveals the author's own battle with throat cancer, for which he was treated with an aggressive course of radiation and surgery.
Thyroid cancer
• New research casts doubt on a cornerstone of thyroid cancer treatment (Angus Chen, STAT, 3-9-22) For decades, radiation has been a cornerstone of thyroid cancer care. “Recently, people have been wondering whether it really does what it’s supposed to, whether its potential harms are worth the potential benefits.” Now a study in the New England Journal of Medicine suggests that surgery alone might be sufficient to cure the lowest-risk thyroid cancers, and that follow-up treatment with radioactive iodine offers no additional benefit for these patients. Radioactive iodine still helps for high-risk thyroid cancer, where the malignancy has already spread throughout the body. Whether follow-up radiation is beneficial for more intermediate-risk thyroid cancers is still an open question.
•Thyroid Cancer Treatment (PDQ Patient version, National Cancer Institute) "According to the National Cancer Institute, there are about 56,000 new cases of thyroid cancer in the US each year, and the majority of those diagnoses are papillary thyroid cancer—the most common type of thyroid cancer. Females are more likely to have thyroid cancer at a ratio of 3:1. Thyroid cancer can occur in any age group, although it is most common after age 30, and its aggressiveness increases significantly in older patients. Thyroid cancer does not always cause symptoms; often, the first sign of thyroid cancer is a thyroid nodule." The four main types of thyroid cancer are papillary thyroid cancer, follicular thyroid cancer, medullary thyroid cancer, and anaplastic thyroid cancer. There is also a childhood thyroid cancer.
• ThyCa: Thyroid Cancer Survivors' Association, Inc.
• Thyroid cancer (National Organization for Rare Disorders) Thyroid cancer is the most common form of cancer affecting the endocrine system. ... The four main types of thyroid cancer are papillary, follicular, medullary and anaplastic. Rare forms of thyroid cancer include thyroid teratoma, lymphoma, and squamous cell carcinoma, all of which are described here.
• Incidence and Types of Thyroid Cancer (Bridget Brady, EndocrineWeb) Papillary, follicular, medullary, and anaplastic thyroid cancers, explained briefly.
• What is thyroid cancer? (Basic information in some detail, American Cancer Society)
• Thyroid Cancer Symptoms, Diagnosis, and Treatments (James Norman, MD, EndocrineWeb)
• Key Statistics for Thyroid Cancer (American Cancer Society)
• Thyroid Cancer Treatment: Less Is Often More, But Surgeons Are Slow To Shift (Carey Goldberg, CommonHealth, WBUR, 11-9-08) 'In 2015, the American Thyroid Association put out new recommendations for scaling back treatment of low-risk tumors, says association president Dr. Elizabeth Pearce, a professor at the Boston University School of Medicine. Death rates differ little, but total thyroidectomies have risen far more than lobectomies. "One would expect, then, since that publication, that lobectomies should be increasing and total thyroidectomies should be decreasing in this country, and we're not seeing that," she says. In fact, total thyroid removals have risen far more than lobectomies. "We should have seen smaller operations, more observation instead of operations," says Dr. Jerry Doherty, chief of surgery at Brigham and Women's Hospital....Doherty very roughly estimates that more than half of thyroid cancer patients are being overtreated, and he sees "low-volume surgeons" — surgeons who rarely operate on thyroids and may not be up to date on the recommendations to scale back — as a major cause...even though more and more of the cancers detected are nonthreatening, the vast majority of patients with small cancers are still getting full thyroid removal.'
• The Rising Incidence of Thyroid Cancer (Carolyn Sayre, Reporters File, NY Times) "The question is whether or not it is related to detection and radiological studies, or if it is related to an authentic rise in thyroid cancer.” "Regardless of the reported increase in small tumors, the standard of care for thyroid cancer remains the same as it was two decades ago. Patients must undergo a thryoidectomy, a surgical procedure that removes all or half of the thyroid gland. Afterward, many patients also require a radioactive iodine treatment, which kills any remaining cancer cells." "Since thyroid cancer has long been thought of as a disease that requires surgery, experts are starting to rethink how they approach the rapidly increasing number of small tumors."
• Got a Thyroid Tumor? Most Should Be Left Alone. (Gina Kolata, Health, NY Times, 8-23-16) "Ultrasound and other scans may reveal small thyroid tumors, many of which would never progress if left alone. Aggressive treatment to remove the thyroid has lifelong consequences and has not reduced the death rate, a sign that thyroid cancer is being overdiagnosed." (Source: New England Journal of Medicine) "Some thyroid cancers, of course, really are dangerous, but they tend to be larger than the tiny ones found with scans. And symptoms like a lump in the neck or hoarseness should not be ignored."
• It’s Not Cancer: Doctors Reclassify a Thyroid Tumor (Gina Kolata, NY Times, 4-14-16) An international panel of doctors has decided that a type of tumor that was classified as a cancer is not a cancer at all. Instead of calling it “encapsulated follicular variant of papillary thyroid carcinoma,” they now call it “noninvasive follicular thyroid neoplasm with papillary-like nuclear features,” or NIFTP. The word “carcinoma” is gone. Calling lesions cancer when they are not leads to unnecessary and harmful treatment.
• Some Thyroid Cancer Patients Can Safely Delay Surgery (Liz Szabo, Kaiser Health News, 8-31-17)
• Roger Ebert: The Essential Man (Chris Jones, Esquire, 2-16-10). Roger Ebert lost his lower jaw and his ability to speak to cancer of the thyroid and salivary glands. The doctors told him they were going to give him back his ability to eat, drink, and talk, but they were wrong.
• 2015 American Thyroid Association Management Guidelines for Adult Patients with Thyroid Nodules and Differentiated Thyroid Cancer (Thyroid, Volume 26, Number 1, 2016, American Thyroid Association)
• ThyCa: Thyroid Cancer Survivors' Association, Inc. (many resources)
• Professional guidelines for various forms of thyroid cancer and thyroid diseases (American Thyroid Association)
• An evidence-based review of poorly differentiated thyroid cancer (Enoch M. Sanders Jr, et al., World Journal of Surgery, May 2007). To find articles like this, do a search on "evidence-based medicine" and the type of cancer you're seeking info on.
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• Back to Information about specific cancers
Rarer types of cancer
Dealing with a rare cancer (whatever body part it starts in) is a subject unto itself, because not everyone will recognize it or know how to deal with it.
• My Own Life: Oliver Sacks on Learning He Has Terminal Cancer (NY Times, 2-19-15). The neurologist who wrote “The Man Who Mistook His Wife for a Hat" and other books learns that his ocular melanoma has metastasized in the liver and, at 81, he learns that he may not see 82.
• Ewing Sarcoma Treatment (PDQ) (National Cancer Institute) Ewing sarcoma is a rare type of tumor that forms in bone or soft tissue. Signs and symptoms include swelling and pain near the tumor.
• I Was All Set to Become the Most Popular Guy in the Cancer Ward. Then I Met My Nemesis: Ben. (Luke Mullins, Washingtonian, 12-11-16) Ewing sarcoma "often migrates to the lungs, where it can become fatal. The good news: We’d caught the cancer before it spread." "But my diagnosis came with bad news, too: Ewing sarcoma has a nasty history of returning even after its tumors have been excised. I was looking at a year of chemo."
• Sarcoma Foundation of America (finding the cure in our time)
• Mind Over Manners (Kindle). Biographer Laura Claridge's brief (50-page) account of her ten-year struggle with a rare brain cancer, Primary Central Nervous System Lymphoma
• Gastrointestinal Carcinoid Tumors (American Cancer Society fact sheet)
• Every Day I Fight, a memoir by sports broadcaster Stuart Scott, who died of a rare appendiceal cancer
• Rare skin cancers (AboutHealth). Cutaneous T-cell Lymphoma, Merkel Cell Carcinoma, Kaposi Sarcoma, Sebaceous Gland Carcinoma, Dermatofibrosarcoma Protuberans.
• PMP Research Foundation to find a cure for Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM)
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• Back to Information about specific cancers
Cancer Syndromes
Ataxia-telangiectasia (A-T)
Birt-Hogg-Dubé syndrome (BHD)
Carney Complex (CNC)
Cowden Syndrome
Familial GIST Syndrome
Hereditary Breast and Ovarian Cancer Syndrome (HBOC)
Li-Fraumeni Syndrome (LFS)
Lynch Syndrome
https://www.cancer.org/cancer/risk-prevention/genetics/family-cancer-syndromes/ataxia.html \
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State Cancer Profiles
Understanding Cancer (National Cancer Institute)
Understanding Cancer Pain (includes Caregiver's Guide, Cancer Pain Treatments)
Useful Medical Links
War against cancer has more than one target (David Brown, Washington Post 4-27-10)
What is cancer? (National Cancer Institute, Defining cancer)
Women's Cancer Network. Comprehensive information about reproductive cancers, gynecologic oncologists, survivors’ courses, clinical trials and Foundation for Women's Cancer publications. (Reproductive cancers include breast, cervical, endometrial, germ and stromal cell, GTD, ovarian, primary peritoneal, uterine, vaginal, and vulvar cancer).
• Finding and Understanding Cancer Statistics (National Cancer Institute)
• Forty Years' War (Gina Kolata, Gardiner Harris, Andrew Pollack, Lawrence K. Altman, Natasha Singer) A New York Times series of articles that examine the struggle to defeat cancer
• Gaps in insurance policies make oral drugs too pricey for some cancer patients (Sandra G. Boodman, Washington Post, 4-27-10)
From Cancer Patient to Cancer Survivor: Lost in Transition. The Institute of Medicine's first confirmed reports on the long-term effects of different types of cancer treatment. (Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board, edited by Maria Hewitt, Sheldon Greenfield, and Ellen Stovall), 2005. A National Academies Press book, available online.
MD Anderson Cancer Center. Excellent site for cancer information, publications, and news
Fighting cancer by eating the right food
and avoiding the bad food
• What to Eat During Cancer Treatment: 100 Great-Tasting, Family-Friendly Recipes to Help You Cope by Jeanne Besser
• Foods that fight cancer (foods to include in your diet, American Institute of Cancer Research)
• Anticancer: A New Way of Life by David Servan-Schreiber
• The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life (recipes from the test kitchen of the American Institute of Cancer Research, which publishes this wonderful cookbook--one of my favorites)
• Beating Cancer with Nutrition by Patrick Quillian (book with CD)
• The Great Organic-Food Fraud (Ian Parker, New Yorker, 11-15-21) There’s no way to confirm that a crop was grown organically. Randy Constant exploited our trust in the labels—and made a fortune.
• Nutrition After 50- (AICR, Healthy Living for Cancer Prevention)
• Fiber: The Rx for Disease-Free Aging (Alan Mozes, HealthDay, 6-23-16) "People can achieve the recommended intake of fiber consumption -- around 30 grams per day -- by eating a wide range of foods such as whole-grain breads and cereals, fruits, vegetables and legumes," reports new study. "Successful aging" was defined in the study as the continued absence of physical disability, depression, breathing problems, or chronic health issues such as cancer, high blood pressure, diabetes or heart disease.
• The Weight-Cancer Link (AICR)
• The Cancer Diet Cookbook: Comforting Recipes for Treatment and Recovery by Dionne Detraz
• The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz and Mat Edelson
• If We Are What We Eat, Read These Books and Articles!
• One Bite at a Time: Nourishing Recipes for Cancer Survivors and Their Friends by Rebecca Katz and Mat Edelson
• Wellness Wisdom: 31 Ways to Nourish Your Mind, Body, & Spirit by Susan Tate
• The Cancer Survivor's Guide: Foods That Help You Fight Back by Neal Barnard and Jennifer K. Reilly
• Six Surprising Cancer Risk Factors (Cancer Care magazine and Upstate Medical University, 7-1-19)
Besides cigarettes and radon and ultraviolet radiation: avoid alcohol, bacon, oral sex, body fat, immunosuppression, and working nights.
Foods to avoid or minimize intake on:
See books like 6 Foods That May Increase Your Risk of Cancer (Healthline) and What foods to avoid if you have estrogen-positive breast cancer? (Medicine.net)
Processed meats (hot dogs, salami, sausage, ham, corned beef, beef jerky)
Fried foods and saturated fats (including deep-fried foods, margarine, nondairy creamers, packaged cookies and crackers, cake mixes, pies, pastries, and processed snacks)
Foods with sugar, added sugar, and refined carbs (including sugar-sweetened beverages and sugary cereals, white pasta, white bread, and white rice)
Starchy foods cooked at high temperatures, such as french fries and donuts.
Foods high in fat, sugar or calories can make it harder to keep a healthy weight.
• AICR's Foods that Fight Cancer (American Institute for Cancer Research) An excellent illustrated chart.
Cancer fighting foods include
Whole grains (like quinoa and brown rice)
Fruits, including citrus fruits (such as oranges, limes, grapefruit) grapes, and berries
Vegetables and herbs, such as broccoli, cabbage, lettuce, celery, parsley, bell pepper, turmeric)
You should also aim for adequate fiber intake (25-30 g daily).
Lean proteins (such as lentils and beans)
Good fats (especially those that contain omega-3 fatty acids, such as walnuts, olive oil, chia seeds, pumpkin seeds, flax seeds, pine nuts) Fish (salmon, sardines, tuna)
• Choosing and Using Cooking Oils: What To Use and When (Cleveland Clinic, 1-17-23) The best cooking oils contain healthier fats, and extra virgin olive oi is the healthiest.
Other approaches to preventing cancer
Sometimes you need to read a finding as the key to a prevention tip -- if X tends to cause cancer, avoid X.
• Cancer Prevention (National Cancer Institute, NCI) Fact sheets on antioxidants, calcium, cancer vaccines, cruciferous vegetables, garlic, human papillomavirus (HPV) vaccines, Pap test and HPV testing, physical activity, statins, prophylactic surgery (mastectomy and salpingo-oophorectomy), tea, vitamin D.
• Obesity Is Linked to at Least 13 Types of Cancer (Nicholas Bakalar, Well, NY Times, 8-24-16) A review in The New England Journal of Medicinelinks an additional eight cancers to excess fat: gastric cardia, a cancer of the part of the stomach closest to the esophagus; liver cancer; gallbladder cancer; pancreatic cancer; thyroid cancer; ovarian cancer; meningioma, a usually benign type of brain cancer; and multiple myeloma, a blood cancer.
• Vitamin B3 Is Found to Help People Prone to Some Types of Skin Cancer (Andrew Pollack, Business Day, NY Times, 5-13-15) In a clinical trial, people who took two pills a day of nicotinamide, a form of vitamin B3 available as a nutritional supplement, had a 23 percent lower risk of developing non-melanoma skin cancer than those who took placebo pills.
• Six-Step Screening: Best Practice in Oral Care (Eva Grayzel) Early-stage oral cancer is often painless and goes undetected. Every dental checkup should include a six-step screening." She asks (here): “Do you get an oral cancer screening at your dental checkups?” Yes, you can get cancer in the mouth! If I had known it was a remote possibility, I’d have been more proactive when the sore in my mouth didn’t heal. I wish I knew that a non-healing lesion in the mouth of a someone who has never smoked and is a social drinker has a higher risk of being cancer. Your dentist or dental hygienist should evaluate your tongue, cheeks, lips, and the floor, roof, and back of your mouth at every visit. Your tongue should be pressed down during this exam to see if the back of your mouth is the same size all around. Also, a thorough screening includes palpation of your neck to check for any hard lumps.'
• What we can learn from Marcia Cross about HPV vaccination (Brian Kim, KevinMD, 6-14-19) Recently, Desperate Housewives star Marcia Cross made headlines by discussing her diagnosis of anal cancer and her husband’s diagnosis of throat cancer, revealing that both had been related to the human papillomavirus, or HPV. HPV doesn’t get nearly the publicity it warrants. The sexually transmitted virus is associated with 34,000 cancers annually, with numbers rising every year, yet it is completely preventable through a vaccine. You can protect your child against a majority of head/neck, cervical and anal cancers with a vaccine. This is where pediatricians can come in, guiding parents and giving them a chance to explore the topic and get educated – rather than just springing it on them during a well-child visit. Marcia Cross realized that stigma and misconceptions are standing in the way of cancer prevention for an entire generation of young people, and she took the brave step of talking about it.
• Death of cancer ( Vincent DeVita and Elizabeth DeVita-Raeburn, Aeon). By the authors of The Death of Cancer "The truth is, the war on cancer has been one of the most successful government programmes ever. But we have outgrown the original act, and we need a new one, with a new organization, to finish the job....The paper showed that all kinds of cancers share six important traits: go after those traits, and we can have effects on many kinds of cancers ....Normally, when we test a new treatment, we establish a protocol and hold that constant during the trial to isolate the effect of the treatment. But in these new multi-hallmark trials, we will need to monitor the effects and adjust the approach on the fly – during the trial – to fully use all the information at our disposal. Current regulations make it difficult to get that kind of study approved." In a review of the book, Sandeep Jauhar writes "Despite my uneasiness with DeVita’s take-no-prisoners strategy, I thoroughly enjoyed his book....But in the end I would have liked to see more about palliative care: when to give up the good fight."
• How to Prevent Cancer or Find It Early (Centers for Disease Control and Prevention, CDC) Among other things, reduce indoor tanning among minors and reduce radon in homes.
• To Take or Not to Take (Lena Huang, Cure, 9-8-08) Role of antioxidant supplements called into question -- again. Some commonly known natural antioxidants are vitamin C, which is found in citrus fruits and blueberries, and beta-carotene, which is found in carrots and other orange foods. These antioxidants and others have been studied in large-scale clinical trials since the 1980s with some showing promise and others revealing increases in cancer rates.
“There are numerous reports that chemopreventive agents derived from natural sources—fruits, vegetables, spices—have antioxidant activity and are beneficial,” says Bharat B. Aggarwal, PhD, professor of experimental therapeutics at M.D. Anderson Cancer Center in Houston. Aggarwal has studied numerous agents in fruits and vegetables, such as curcumin (a spice), lycopene (found in tomatoes), and resveratrol (found in grapes), that target specific molecular actions that can have preventive effects on cancer and other diseases. Until further studies on specific antioxidants and cancer outcomes are done, Lawenda recommends patients get a natural mix of antioxidants through food sources as specified through the federal government’s dietary guidelines (health.gov/dietaryguidelines/).
“We recommend that patients continue to meet the established dietary requirements [set by the government] for the essential vitamins C and E and the intake of carotenoids, flavonoids, and related antioxidant phytochemicals,” says Brian D. Lawenda, lead investigator of a new study reported in the Journal of the National Cancer Institute, which concludes that cancer patients undergoing radiation or chemotherapy should avoid routine use of antioxidant supplements.
• The insider's guide to cancer prevention (The Guardian, 4-6-12). These experts spend their lives fighting cancer. They have heard every tip, sensible or not, for how to avoid it. They tell Oliver Laughland how their lifestyles have changed as a result. What do they do? A breast specialist gets a mammogram every year. A tumor specialist never goes in the sun without sunblock. Other specialists: Take a daily low-dose aspirin. Take Vitamin D (because we get too little sun). Eat a Mediterranean-style diet ("lots of processed tomato products and olive oil"). Greatly limit intake of red meat and cured meat (cancel the bacon). Exercise. Great limit intake of alcohol and never, never smoke.
• Cancer Risk Factors and Possible Causes (NCI) Fact sheets on "light" cigarettes, accidents at nuclear power plants, acrylamide in food (potato chips, French fries, and other foods produced by high-temperature cooking), agriculture, alcohol, antiperspirants, artificial sweeteners, asbestos, ataxia telangiectasia (A-T), BRCA1 and BRCA2 genes, cell phones, meat cooked at high temperatures, cigars, DES (a synthetic form of estrogen), electromagnetic fields, fluoridated water, formaldehyde, hair dyes, cigarette smoking, H. pylori infection, HIV infection, HPV, menopausal hormone therapy, nasopharyngeal radium irradiation (to treat ear dysfunctions from 1940 through 1970), obesity, oral contraceptives, psychological stress, radon, reproductive history, secondhand smoke, smokeless tobacco).
• Recommendations for Cancer Prevention (American Institute for Cancer Research)
Do not smoke or chew tobacco.
Tend toward lean but not too lean.
Be physically active at least 30 minutes a day.
Avoid sugary drinks and energy-dense food.
Eat a variety of vegetables, fruits, whole grains and legumes such as beans.
Limit consumption of red meats and avoid processed meats (such as bacon).
Limit alcoholic drinks and consumption of salty foods or sodium-processed foods. Etc.
• Cancer doctors leading campaign to boost use of HPV vaccine (Laurie McGinley, WaPo, 6-19-16) We have a vaccine for certain cancers. Why don't more people get it? The 64,000-member American Academy of Pediatrics has urged members to use the vaccine. But Cleveland pediatrician Margaret Stager, who works on adolescent health issues for the organization, said it remains “brand-new territory” for many doctors, especially older physicians. “They have seen whooping cough, meningitis, measles and mumps and have real-life evidence of the power of vaccines to save lives,” she said. “Now we have a whole new fundamental concept, because this vaccine is trying to prevent cancer several decades from now.”
• HPV Cancer on the Rise (Peter Jaret, AARP the Magazine, Oct./Nov. 2016) More and more men — often healthy, in their 40s to 60s — are showing up with a form of throat cancer that targets the tonsils and the back of the tongue, an area called the oropharynx. Public health experts warn that the number of cases in men over age 50 will rise dramatically in the coming years. Oncologist Maura Gillison was one of the first researchers to suspect that the cancers were being caused by an unexpected culprit: human papillomavirus, or HPV, the same virus that causes cervical cancer in women. Researchers are now convinced that HPV causes most oropharyngeal cancers; the latest findings show that 3 out of 4 cases of the disease are HPV-positive. HPV can be transmitted through all forms of sex — oral, vaginal and anal — and may also be transmitted through deep kissing, according to the Centers for Disease Control and Prevention (CDC). HPV is also linked to anal and penile cancer, as well as genital warts.
• Piping Hot Drinks May Lead to Cancer of the Esophagus (Sondra Forsyth, Cancer Center, Third Age). You'll find more stories on Third Age about cancer here.
• Breast-Cancer Risk Can Be Reduced via Lifestyle Choices (Jane Farrell, Cancer Center, Third Age) Eat right, exercise, and don't smoke, to begin with. Drink less alcohol, lose weight, and do not use hormone replacement therapy. Oh--and do not get old. The chances of breast cancer increase with age.
• BRCA1 and BRCA2: Cancer Risk and Genetic Testing (National Cancer Institute BRCA fact sheet)
• Hereditary Breast and Ovarian Cancer (Cancer.net fact sheet)
• How to Halve the Death Rate From Colon Cancer (Denise Grady, NY Times, 5-1-07) "The reason this cancer is so easily prevented or cured is that most of the time it begins as a polyp in the lining of the intestine, progressing slowly and possibly turning malignant. Tests that examine the colon can find polyps, and doctors can snip them out before they become cancers. Or the tests can reveal early tumors that can also be removed. But tests for colorectal cancer are not popular."
• Avoiding a colonoscopy? Read these personal stories about screening for colorectal cancer (CDC) "The prep for the colonoscopy was honestly not that bad. The colonoscopy was accompanied by sedation that made me wonder, 'Is that all there is to it?'”
• A Teachable Moment on the Need for Colon Cancer Screening (Jane E. Brody, NY Times, 4-4-16)
• An aspirin a day – for years – may keep colon cancer away (Will Boggs, MD, Reuters Health, 8-24-15) Taking one or two baby aspirins a day for at least five years was tied to a lower risk of colorectal cancer in a study from Denmark. "Unless low-dose aspirin is taken continuously, there is little protection against colorectal cancer.” See HealthNewsReview summary and evaluation of story.
• No Good Alternatives to Cigarettes (podcast, Centers for Disease Control and Prevention)
• Asbestos Disease Awareness Organization (ADAO) "Hear Asbestos. Think Prevention."
NCCN Guidelines for Patents. For unfamiliar terms, see the NCCN glossary.
BOOKS ABOUT CANCER AND SERIOUS ILLNESS
(including memoirs of coping with cancer below)
• Another Morning: Voices of Truth and Hope from Mothers with Cancer by Linda Blachman
• The Death of Cancer by Vincent T. DeVita and his daughter, Elizabeth DeVita-Raeburn. "DeVita, as befits someone who spent a career at the helm of various medical bureaucracies, has written an institutional history of the war on cancer. His interest is in how the various factions and constituencies involved in that effort work together—and his conclusions are deeply unsettling." ~ From Malcolm Gladwell's story about DeVita's book and approaches to cancer research, Tough Medicine (New Yorker, 12-14-15) A disturbing report (and a fascinating story) from the front lines of the war on cancer.
• The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman
• Anticancer, A New Way of Life by David Servan-Schreiber (psychiatrist and 15-year brain cancer survivor on environmental, dietary, and emotional adjustments one can make in one’s life to mitigate suspected carcinogenic influences)
• Before I Say Goodbye: Recollections and Observations from One Woman's Final Year by Ruth Picardie
• Beating Cancer with Nutrition by Patrick Quillin (book and CD). See also We are what we eat.
• A Breast Cancer Journey: Your Personal Guidebook by the American Cancer Society
• Breast Cancer Survival Manual: A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer by John Link, 4th edition.
• Cancer: 50 Essential Things to Do by Greg Anderson
• Cancer for Christmas: Making the Most of a Daunting Gift by Casey Quinlan. "“I boil it down to this: when you take your car to a car wash, do you want to go through inside the car, or strapped to the hood? Not being informed, not taking a proactive approach to your medical care, is like going through the car wash strapped to the hood. You’ll wind up beaten to smithereens by the whirly-towel things, and get buckets of soap and wax up your nose, if you choose to go through the medical car-wash as an uninformed participant." Listen to Quinlan, interviewed by Liz Humes on the WordyBirds radio program.
• Cancer Made Me a Shallower Person: A Memoir in Comics by Miriam Engelberg. "If you're a breast cancer survivor who appreciates off-beat humor and stark honesty, give this book a chance," says one cancer survivor. Warning: an abrupt, unhappy ending.
• Close to the Bone: Life-Threatening Illness As a Soul Journey by Jean Shinoda Bolen(how living with the threat of death can take us to a deeper level--with a new section about forming circles in the time of crises)
• The Cheating Cell: How Evolution Helps Us Understand and Treat Cancer by Athena Aktipis. "Brilliantly illuminating how cancer is a form of evolution gone awry within our bodies, Athena Aktipis shows that we need an evolutionary approach to not only fight the disease but also live with it."―Daniel E. Lieberman
• The Complete Cancer Organizer: Your Answers to Questions About Living with Cancer (spiralbound) by advance practice nurses by Jamie Schwachter and Josette Snyder
• DeVita, Hellman, and Rosenberg's Cancer: Principles & Practice of Oncology (Cancer: Principles & Practice), latest version of oncologists' chief reference, originally by Vincent DeVita (also, see other cancer textbooks by DeVita and see cancer textbooks by Martin D. Abeloff on MD Consult)
• A Cancer Survivor's Almanac, by Barbara Hoffman
• Crazy Sexy Cancer Tips by Kris Carr (advice, warnings, and resources for the young cancer patient)
• Crazy Sexy Cancer Survivor: More Rebellion and Fire for Your Healing Journey by Kris Carr
• Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, by Patrick C. Walsh and Janet Farrar Worthington
• Dr. Susan Love's Breast Book (valuable if you have early-stage cancer; get the latest edition)
• The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee (a wonderful, highly readable book). You can listen to the author's once-over-lightly lecture on the same material at NIH: Constructing a History of Cancer, introduced by Harold Varmus.
• Everyone's Guide to Cancer Therapy, by Malin Dollinger
• Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's by Kairol Rosenthal (read it EARLY for info on how to navigate the health care system)
• The Goldfish Went on Vacation: A Memoir of Loss (and Learning to Tell the Truth about It) by Patti Dann. The moment when Patty Dann’s husband was diagnosed with terminal brain cancer, she felt as though the ground had dropped out beneath her. Her grief, however, was immediately interrupted by the realization that she would have to tell their three-year-old son, Jake, that his father was dying. The prognosis gave her husband just a year to live. In that short time, the three of them—Patty, Willem, and Jake—would have to find a way to live with the illness and prepare for his death.
• Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope
• Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan
• Living with a Brain Tumor: Dr. Peter Black's Guide to Taking Control of Your Treatment, by Peter Black with Sharon Cloud Hogan
• Lung Cancer: Myths, Facts, Choices -- and Hope, by Claudia I. Henschke, Peggy McCarthy, and Sarah Wernick
• Off Our Chests: A Candid Tour Through the World of Cancer by John and Liza Marshall. "“For those who face their own difficult diagnoses, this is a sort of What to Expect When You’re Expecting, an invaluable guide for cancer patients and their families who may be struggling with what comes next. A powerful and deeply personal story of one couple’s battle against breast cancer – a couple that happens to include a leading oncologist – told with honesty, candor and humor."~ Susan Page, USA Today
• Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer by Nancy G. Brinker with Joni Rodgers
• Prostate and Cancer: A Family Guide To Diagnosis, Treatment and Survival, by Sheldon Marks
• Prostate Cancer and the Veteran by Tom Benjey
• The Red Devil: To Hell With Cancer - And Back by Katherine Russell Rich (long-term survivor of stage 4 breast cancer)
• Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities by Elizabeth Edwards
• Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, , by Cappy Capossela and Sheila Warnock
• There's No Place Like Hope: A Guide to Beating Cancer in Mind-Sized Bites by Vickie Girard
• What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope, edited by Julie K. Silver
• When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses by Elise Babcock
• Berardi, Luci. Chasing Rainbows, My Triumph Over Ovarian Cancer
• Bishop, Bryan. Shrinkage: Manhood, Marriage, and the Tumor That Tried to Kill Me (his brain stem glioma was inoperable, but radiation could shrink it--brain tumor humor!)
• Brant, Mary Jane Hurley. When Every Day Matters: A Mother's Memoir on Love, Loss and Life
• Broyard, Anatole. Intoxicated by My Illness (critical illness, in his case from cancer, as a spiritual journey)
• Bundy, Andrew. Surviving the Cure: Cancer was Easy,* Living is Hard After barely surviving treatments for leukemia, a teenager discovers the after-effects of the cure make returning to a normal life all but impossible. "Not long after I returned home, my lungs started failing. The cure was killing me."
"For many children diagnosed with cancer, not only can the therapy carry significant and life-threatening side effects during treatment, the effects can extend years beyond completion of cancer therapy into survivorship. For some patients with leukemia who must undergo a stem cell transplant, the long-term effects can be especially severe. Among many messages contained in Andrew's story, one is the clear need to develop more effective and less toxic treatment; patients deserve no less."--Dr. Peter C. Adamson, Children's Hospital of Philadelphia.
• Bye, Ronald. Memoirs of a 30-Year Cancer Survivor (diagnosed with testicular cancer at 20)
• Claridge, Laura. Mind Over Manners (Kindle). A biographer's brief (50-page) account of her ten-year struggle with a rare brain cancer, Primary Central Nervous System Lymphoma)
• Engelberg, Miriam. Cancer Made Me a Shallower Person: A Memoir in Comics
• Ensler, Eve. In the Body of the World: A Memoir of Cancer and Connection. This impassioned memoir by the author of The Vagina Monologues "uses her personal story of enduring treatment for a huge, Stage IV uterine tumor, as a metaphor for our destruction of our planet and for our toleration of the atrocity of gang rape as a weapon of war," especially in the Congo.
• Fox, Jackie. From Zero to Mastectomy: What I Learned and You Need to Know About Stage 0 Breast Cancer, a "mammoir" about being diagnosed with DCIS, or ductal carcinoma in situ, stage 0.
• Gallelli, Antoinette. OVARIAN CANCER: My Walk With It
• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
• Gubar, Susan. Memoir of a Debulked Woman: Enduring Ovarian Cancer . After agreeing to undergo a radical, surgically difficult, potentially fatal treatment for ovarian cancer--removing as much tumor-ridden tissue as possible, reducing the load so chemotherapy could work on the rest--the famed feminist writes about her experience surviving the surgery and writing frankly about the female body. See her story in short in the Chronicle of Higher Education, also: A Feminist Professor's Closing Chapters , a misleading title, in that she does survive to write about it.
• Handler, Evan. Time on Fire: My Comedy of Terrors (recounting with grim humor his battle with leukemia at age 24 and his hellish journey through the land of the sick)
• Hood, Ann. Do Not Go Gentle: The Search for Miracles in a Cynical Time (her search for a miraculous cure for her father's inoperable lung cancer)
• Ingalls, Karen. Outshine - An Ovarian Cancer Memoir
• Ingrassia, Lawrence. A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery Weaving his own moving family story with a sweeping history of cancer research, Lawrence Ingrassia delivers an intimate, gripping tale that sits at the intersection of memoir and medical history.
• Kamenentz, Rodger. Terra Infirma (a searing recollection of his mother's life and her death from cancer, his mother "yo-yoing between smothering affection and a fierce anger")
• Liberman, Laura, MD. I Signed as the Doctor: Memoir of a Cancer Doctor Surviving Cancer
• Lord, Audre. The Cancer Journals (about her breast cancer and mastectomy)
• Lord, Catherine. The Summer of Her Baldness: A Cancer Improvisation While Lord suffers from unwanted isolation and loss of control as her treatment progresses, Her Baldness talks back to the society that stigmatizes bald women, not to mention middle-aged lesbians with a life-threatening disease.
• Madoff, Roger. Leukemia for Chickens
• Price, Reynolds. A Whole New Life: An Illness and a Healing (spine cancer makes him paraplegic, but liberates his imagination)
• Raab, Diana M. Healing With Words: A Writer's Cancer Journey. Raab's story of surviving a rare form of breast cancer (DCIS or ductal carcinoma in situ--cancer of the mammary glands, detectable only through a mammogram) and, five years later, multiple myeloma (by the author of Regina's Closet: Finding My Grandmother's Secret Journal)
• Rockowitz, Glenn. Rodeo in Joliet . "As a faculty member, I believe that Rodeo in Joliet should be required reading for all medical students before walking onto the ward. As a cancer survivor and physician, I'm again struck by the capricious nature of this disease and the fragility of our time here. Rockowitz tells it just like it is." ----Brandon Hayes-Lattin, M.D. Director of Adolescent and Young Adult Oncology, Knight Cancer Institute
• Rubinstein, Benjamin. TWICE: How I Became a Cancer-Slaying Super Man Before I Turned 21 (the raw, real story of a teenager who painfully survived the rare cancer Ewing's sarcoma twice--inspiring, but "not a feel-good story."
• Shotel, Jay. It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia
• Steiner, Nicholas. Unforeseen Consequences: A Physician's Personal Triumph Over Advanced Melanoma. Having endured many conventional treatments , he was in final stages of melanoma when he put his trust in a Chinese herbalist.
• VanDerHeide, Rebecca as told by Peg Jennings. Saving Face: A Memoir of Cancer and Courage (about a rare form of cancer that will change her face)
• Joyce Wadler. My Breast, One Woman's Cancer Story (Plucky Cancer Girl Strikes Back, Vol. 1) Kindle
• Joyce Wadler. Cured, My Ovarian Cancer Story (Plucky Cancer Girl Strikes Back, Vol. 2) Kindle
• Wisenberg, S.L. The Adventures of Cancer Bitch. See Kyle Minor's review in Salon.com: “The Adventures of Cancer Bitch”: Memoir of a sassy survivor (10-12-12: "S.L. Wisenberg's virtuosic, poignant book documents her battle with cancer and the malignant culture of dishonesty")
• Williams, Marjorie. The Woman at the Washington Zoo: Writings on Politics, Family, and Fate (the last third is about her losing battle with cancer)
• Wittman, Juliet. Breast Cancer Journal: A Century of Petals
National Cancer Institute (NCI) Start here. A wealth of reliable and up-to-date information, clearly reported.
• Types of cancer (and elsewhere on the site you'll find more details on each of them)
• A to Z list of cancers (find and retrieve information about a particular type of cancer)
• Cancer topics
• NCI dictionary of cancer terms (with pronunciation, in English and Spanish)
• Glossary of statistical terms
• NCI drug dictionary
• NCI dictionary of genetics terms (for example, SDR: The aunts, uncles, grandparents, grandchildren, nieces, nephews, or half-siblings of an individual. Also called second-degree relative)
• Cancer stat fact sheets (a collection of statistical summaries for a number of common cancer types, developed to provide a quick overview)
• NCI Cancer Bulletin archives (news about cancer research -- suspended publication after January 2013)
SCIENCE FRIDAY radio programs on cancer:
• A Trade-off Between Skin Protection and Testicular Cancer Risk? (NPR, Science Friday, 10-11-13) A genetic variation that protects skin against sun damage may also increase the risk of testicular cancer, at least in mice. Researcher Gareth Bond discusses why this relationship may have evolved and how the findings could help to create personalized cancer treatments for humans.
• Cancer Cell Mitochondria (Mariel Emrich, 1-31-12) Researchers at the Kimmel Cancer Center at Jefferson have identified cancer cell mitochondria as the energy provider of tumor growth. This will allow room for new therapeutic targets in breast cancer.
• Arming Fat Cells to Fight Brain Cancer (3-15-13) Harvesting stem cells from human fat may be an effective way to treat brain cancer, researchers report in the journal PLoS One. Alfredo Quinones-Hinojosa, of the Johns Hopkins School of Medicine, explains how fat cells can be used as Trojan horses to fight cancer.
• Reexamining the Definition of Cancer (8-2-13) Will redefining cancer help prevent overdiagnosis and overtreatment?
• Doctors Turn to Genetics to Search for Cancer’s Achilles’ Heel (1-11-13) To develop more effective treatments for cancer, doctors are zeroing in on the disease’s genetic drivers. John DiPersio, chief of oncology at Washington University Medical Center, and Merck’s Gary Gilliland discuss how this may revolutionize the future of cancer treatment.
NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.
Oncolink (Abramson Cancer Center, University of Pennsylvania)
Oncology, by OncologySTAT (access to professional information in cancer-related journals)
Ovarian Cancer (cancer of the ovaries, MedicineNet.com)
PDQ (Physician Data Query, NCI's comprehensive database, with peer-reviewed summaries on cancer treatment, screening, prevention, genetics, and supportive care, and complementary and alternative medicine, and more)
PDQ: Questions and Answers
Prepared Patient Forum (Center for Advancing Health site on how to find and use safe, decent health care)
Managing cancer pain
• Pain Control: Support for People With Cancer (download this very helpful National Cancer Institute booklet or ebook) Covers different types of cancer pain, their causes, and emphasizes having a pain control plan.
• Cancer Pain (American Cancer Society, 800.227.2345) Having cancer does not always mean having pain. But if you do have pain, there are many different kinds of medicines, different ways to take the medicines, and non-drug methods that can help relieve it.
• Causes and types of cancer pain (Cancer Research UK) Cancer pain has different causes and there are different types (nerve pain, bone pain, soft tissue pain, phantom pain, referred pain). Different types of pain need different types of treatment. Other common terms used to refer to pain: acute, chronic, and breakthrough pain. See Treating cancer pain
• Cancer Pain Management (MD Anderson Center)
• Tips for managing cancer pain (in brief, Cancer Treatment Centers of America)
• Cancer pain (Wikipedia) Wikipedia can't be your only source, but this is a good overview of things you should be aware of, if you are dealing with cancer pain (though links aren't all working).
• Opiate Alternatives in Cancer Pain (MedPage Today video, 7-19-17) Anesthesiologists are "uniquely qualified" to help cut opioid use among cancer pain patients by offering alternative treatments including interventional techniques, according to Oscar de Leon-Casasola, MD, of the University at Buffalo.
Tools for coping
Start here:
• Dating While Dying (Josie Rubio, Opinion, Sunday NY Times, 8-24-19) I found myself terminally ill and unexpectedly single at 40. I didn’t know which was more terrifying. (Her profile on a dating app: “I have cancer so if you want to hang out, act now!” reads the first line.)
Practical tips and resources for cancer care
• Advanced Cancer (National Cancer Institute)
---Choices for Care When Treatment May Not Be an Option (palliative care, hospice care, clinical trials)
---Advanced Cancer and Caregivers
---Questions to Ask Your Doctor about Advanced Cancer
---Talking about Advanced Cancer
---Coping With Your Feelings
---Too Few Patients with Cancer Communicate Preferences for End-of-Life Care (on Cancer Currents blog, to which you can subscribe)
---Last Days of Life (Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ)
• Advice for helping a friend with cancer (Suleika Jaquad).
• Aiding the Doctor Who Feels Cancer’s Toll (Jane E. Brody, Well column, NY Times, 11-26-12). Doctors "who care for terminally ill patients, are subject to two serious forms of occupational stress: burnout and compassion fatigue. According to one study of 18 oncologists, doctors "who saw their role as both biomedical and psychosocial found end-of-life care very satisfying. But those 'who described a primarily biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease and an absence of collegial support.'” If your doctor isn't showing compassion, s/he may be going through his or her own problems with your diagnosis.
• How the book “When Breath Becomes Air” changed my practice (Kim A. Reiss, MD, on KevinMD, 8-13-16). As an oncologist who treats primarily pancreatic cancer, Reiss writes, he was working with patients with limited chances for survival. "Reading Paul Kalanathi’s book was to experience terminal cancer from the inside and the outside simultaneously....The insider’s look at the journey was jarring but revivifying. With Paul’s words in my head, I could be more emotionally present for my patients; I could help them more effectively. Against my expectations, the shift did not cause more emotional fatigue, but rather relieved it."
• Cancer Family Care. This is the site of the Cincinnati Cancer Family Care, which offers publications such as Counseling, How to Talk with Health Care Professionals, You Can Help When Your Friend Has Cancer Did You Know? and Cancer Patients' Bill of Rights. Google Cancer Family Care to find one near you; they may provide services you need, such as counseling.
• Cancer and Mouth Sores (Melanie Haiken, Caring.com) Why mouth sores develop, prevention, treatment, and pain relief
• CANHELP, alternative cancer therapies, information and support service
• Chemo Chicks (useful links and resources)
Cancer caps and hats
• YearRound Hats and Turbans (Tender Loving Care, American Cancer Society,for covering baldness from chemo -- see other resources listed on left)
• Headcovers Unlimited (headwear, wigs, soft hats and scarves, sleep caps, false eyelashes and eyebrows, and other resources. See, for example, wig "how-to" videos.
• Tips on How to Wear a Hat
• Tips on Choosing and Wearing a Wig (plus links to other practical articles)
• Masumi Headwear
• Fat Thumb Chick
• Head Huggers (knits hats for chemo patients)
• Heavenly Hats (volunteers collect and distribute hats, for free, to patients with medical conditions or treatments that lead to hair loss)
• Good Wishes (scarves for patients with hair loss)
• Wig Essentials
Complementary and alternative medicine (CAM)
• What Is Complementary and Alternative Medicine (CAM)? (NCI)
• The American Cancer Society Complete Guide to Complementary & Alternative Cancer Therapies (spells out the evidence, or not, of hundreds of therapies' effectiveness and side effects)
• Alternative and Complementary Therapies (CancerGuide). Comments about books on alternative therapies and advice on a range of topics, including cancer and disability, being smart about group health insurance , and comments on a range of therapies, from Sun Soup to Shark Cartilage (including a sensible section on evaluating alternative therapies .
• About herbs, botanicals, and other alternative approaches to treating cancer (Q&As from Memorial Sloan-Kettering Cancer Center)
• My Alternative Cancer Diary (blog on alternative care for cancer, including nutritional approaches)
• Easing a patient’s pain — even without proof it works (Liz Kowalczyk, Boston Globe, 6-20-16) Dana-Farber is embarking on its largest expansion yet of unconventional therapies. Over the past year, it has taken the unusual step of offering reiki, an ancient Asian technique, and foot reflexology free of charge to adults and children — as well as acupuncture to adults — in its outpatient infusion clinics during chemotherapy treatments. A growing body of research supports acupuncture as a treatment for pain and nausea in oncology patients, but few high-quality studies exist on the effectiveness of reflexology and reiki. The investment by Dana-Farber, a leading cancer treatment center, underscores a growing willingness among mainstream medical institutions nationally to offer complementary therapies that appear to help patients — even without definitive proof.
CancerCare (counseling, financial and insurance information and education for caregivers). Click here or call 1-800-813-4673)
Helping one's children deal with one's cancer
“During a crisis, the human tendency is to revert to a survival mentality and, if we’re parents, to protect our children. But raising children is not only about protection. It is also about growth for both parent and children. . . . Real life has always demanded that both parents and children tolerate uncertainty and learn to bear inevitable tensions: between attachment and separation, illusion and disillusion, stability and change, health and sickness. And the human condition demands that parents do it all against the inescapable backdrop of mortality, perceiving the whole of reality while maintaining compassion, optimism, and hope....
“A common, unrealistic parental expectation is wanting life for our children to be simple and smooth when the human condition and the core of mothering are characterized by contradiction, ambivalence, and paradox. Perhaps mothers can find comfort in knowing that perfect security and perfect mothering are neither attainable nor desirable. Children have always suffered. Mothers have never been forever.”
~ Linda Blachman, in Another Morning: Voices of Truth and Hope from Mothers with Cancer
Close to the Bone: Life-Threatening Illness As a Soul Journey, a book by Jean Shinoda on how living with the threat of death can take us to a deeper level (with a section about forming circles in the time of crises)
Corporate Angels Network (free transportation to treatment facilities -- on otherwise empty seats on corporate aircraft)
Cure, a publication for cancer patients and survivors. Get free subscription or e-newsletter targeted to your needs.
Dictionary of cancer terms (National Cancer Institute, NIH). See also NCI Drug Dictionary and NCI Dictionary of Genetics Terms
Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)
Foods that fight cancer (that link lists foods to include in your diet)
• The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life (recipes from the test kitchen of the American Institute of Cancer Research, which publishes this wonderful cookbook--one of my favorites)
• Wellness Wisdom: 31 Ways to Nourish Your Mind, Body, & Spirit by Susan Tate
• The Cancer Survivor's Guide: Foods That Help You Fight Back by Neal Barnard and Jennifer K. Reilly
Cancer support groups
• Association for Cancer Online Resources (ACOR) , with links to a hundred online patient discussion groups. Browse the incredible general list of ACOR online communities.
• Blue Hope Nation (a private Facebook group with more than 5,000 members), supported by the Colon Cancer Alliance.
• Brain tumor support groups (search for those in your state). National Brain Tumor Society
• Breast cancer discussion boards (Breastcancer.org)
• Breast cancer support groups (BreastCancer.org on how to find them in your area) See also How Can I Find a Breast Cancer Support Group in My Area?
• Cancer Hope Network Talk with a cancer survivor. (Matches cancer patients or family members with trained volunteer cancer survivors who themselves have undergone and recovered from a similar cancer experience. Call 1-800-552-436
• Cancer Support Community (so that no one faces cancer alone -- a global network of education and hope, a merging in 2009 of The Wellness Community and Gilda's Clubs). Check out CSC's links.
• Cancer Survivors Network (American Cancer Society)
• Celebrating Life Foundation (CLF) (teaches breast-cancer awareness and self-exam techniques, especially for black women)
• Colontown, an online community of more than 40 “secret” groups on Facebook for colorectal patients, survivors, and caregivers. There are separate neighborhoods focused on patients with different stages of disease, the differing types of treatment, and special interests – such as CRC clinical trials, young-onset CRC patients, and local support groups. Sponsored by the Colon Cancer Alliance. To join, sign up here. You can also call the helpline at 877.422.2030. See How One Tiny Facebook Group Became a Life-Saving Hotbed of Cutting Edge Colon Cancer Clinical Trials (Brent Lambert, FEELGuide, 12-30-16) "How a Facebook group of cancer patients and their loved ones, called COLONTOWN, is allowing patients to share their fears and the latest medical advances that could have a life or death impact. The group has become a global leader in providing the most cutting edge information on the latest research and clinical trials that even most doctors don’t know about.
•ePatient Dave's TED video about patient empowerment--all the things you can learn from other patients with your same health problem who have often discovered practical tips and clinical trials and new approaches that he might not have learned about through his first doctors.
• The Gathering Place, Beachwood (support for those touched by cancer)
• Gilda's Club (NYC,history). Some Gilda's Clubs still thrive, but some have been rebranded as the Cancer Support Community (CSC) See also Selfie by Melanie Di Stante (Pulse: Voices from the Heart of Medicine, 8-12-16). What she and her children got from their Gilda's Club programs. See also her story What You'll Miss If You Turn Away From My Family's Cancer Story (The Mighty) about what she and her children gained and learned because of her husband's fight with cancer.
• God's Love We Deliver (nutritious meals for people living with serious illness--in New York City)
• GroupLoop (a safe place for teens with cancer to connect to find support, education, and hope, while dealing with a cancer diagnosis)
• Hope Connections (for Cancer Support)
• Imerman Angels ("Your one-on-one cancer support community"). Mentor Angels, who are cancer survivors, provide one-on-one support and information that cancer patients and caregivers may need, beyond the scope of what their medical doctors provide. See its blog.
• Knit One, Cure One Knitting enthusiasts support the fight against breast cancer by making and selling unique wearable fiber art – donating 90% of proceeds to support breast cancer research at area cancer centers and local partners providing services and support to cancer patients, survivors.
• Macmillan Cancer Support (a UK-based community support group, for sharing feelings about cancer experience)
• Men Against Breast Cancer ("supporting the women we love")
• MyLifeline.org (ACS). You set up a personal website, through which cancer patients and caregivers can connect to their community of family and friends, share their journey, get support, and focus on healing.
• MyOncoFertility.org (links to support groups and cancer sites such as Fertile Hope (LiveStrong Fertility)
• National Cancer InstituteFind an NCI-designated cancer center NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States. Find a center near you (search by state or region) and learn about its patient services and research capabilities.
• The PAN Foundation The PAN Foundation offers nearly 70 disease-specific assistance programs. Its assistance programs help patients pay for their out-of-pocket costs, including deductibles, co-pays and coinsurance, health insurance premiums, and transportation expenses to get to treatment.
• Patients Like Me (list of conditions for which PLM groups exist). Here, for example, is a Patients Like Me support group for people living with neuroendocrine tumor (NET). In searching for "patients like me" you can filter for patients, conditions, treatments, symptoms, and research.
• Planet Cancer ( a community of young adults with cancer in their 20s and 30s)
• Project Angel Heart (Denver, Colorado -- A meal with heart gives hope)
• The Rose Every woman deserves quality breast care (including mammograms and bone density testing)
• Sarcoma support groups (Sarcoma Alliance)
• StupidCancer (the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media)
• Surviving Whole (an online community where people affected by cancer can learn from each other, share their experiences and inspire each other to survive whole)
• 7 Ways to Cope with Chemo (Jessie Gruman, Parade, 9-14-08)
• Talking to Doctors About a Terminal Diagnosis (Judith Johnson, Huffington Post). And read the comments.
• TeamSurvivor (National Association of Team Survivor oversees development of affiliates that foster exercise and health education programs for women affected by cancer)
• 2BMe (a site for teens with cancer)
• Young Cancer Survivors
• Zero Prostate Cancer support group
• The Unspoken Diagnosis: Old Age (Paula Span, The New Old Age, NY Times 12-29-11)
• U.S. National Library of Medicine. (NLM's website offers valuable search tools, lists of recent proceedings and library catalogues, and access to several cancer-focused databases)
• To Treat the Cancer, Treat the Distress (Laura Landro, The Informed Patient, WSJ, 8-27-12, on the new push to treat cancer distress)'
• Welcome to Cancerland (Barbara Ehrenreich, Harper's Magazine, Nov. 2001) A cancer survivor, she criticizes breast cancer societies with their pink ribbons and teddy bears as businesses that promote cancer awareness for commercial gain.
• Women with Cancer
• Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman and Idelle Davidson
Finding support for the family
CAMPS
• Camp Good Days and Special Times (NY, Celebrating courage)
• Camp Quality USA (Ohio, Letting kids with cancer be kids again)
• Camp Sunshine (Georgia, Program for children with cancer)
• Eagle Mount, Bozeman Everybody has challenges. We have adventures. Provides quality therapeutic recreational opportunities for people with disabilities and young people with cancer
• The Hole in the Wall Gang Fund founded by Paul Newman to permit children with serious illness to experience the transformational spirit and friendships that go hand-in-hand with camp
• Camp Out (The Hold in the Wall Gang) an outreach program that brings camp-style activities and games to seriously ill children in their hometowns throughout the Northeast
• Caring Bridge (allows people to easily get updates and offer support and encouragement)
• CareFlash (for simplifying communications with a circle of friends and family, when you're dealing with a major illness or hospitalization)
• Caring Bridge (free, easy-to-create websites help patients post updates and send e-mails to family and friends who request e-mail updates). In my personal experience, this was a lifesaver.
• Posthope, an alternative to Caring Bridge, described here: Alternatives to CaringBridge (Patient Websites & Caregivers).
• Candlelighters: Childhood Cancer Family Alliance No family has to face childhood cancer alone
• Caregiver Action Network. A family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
• Hope & Heroes Children's Cancer Fund (funds life-saving work on childhood cancer and blood disorders at Columbia University Medical Center)
• KidsCope (helping kids and families understand cancer)
• Kids Konnected. Provides friendship, understanding, education and support for kids and teens who have a parent with cancer or have lost a parent with cancer.
• Living Beyond Breast Cancer Connecting people with trusted breast cancer information and a community of support.
• Lotsa Helping Hands. Create a care community. Easily organize meals and help for family and friends in need.
• National Breast Cancer Foundation
• Prostate Cancer Foundation (PCF) Lots of useful links.
• Ronald McDonald House Helping families stay close to their child through a network of local chapters
• StupidCancer supporting help for young adult cancer
• Sunshine Kids Foundation (dedicated to children with cancer)
• Supersibs (serving siblings of children with cancer)
• Teens Living With Cancer
• This Star Won't Go Out, a family foundation that provides financial support to families of children with cancer, providing funds to help pay for travel, a mortgage or rent check, and other cost of living expenses. The story behind the story: My sister Esther inspired ‘The Fault in Our Stars.’ The movie is her sequel. (Evangeline Earl, Washington Post, 6-15-14)
• Tom Coughlin Jay Fund Foundation (Jacksonville Beach, FL) whose mission is to BE THERE for families battling childhood cancer with financial, emotional and practical support
• Well Spouse Association (WSA) Support includes face-to-face support groups, respite events, and conferences; an online forum; peer mentors, and more. Mottoes: "You Are Not Alone" and "When One is Sick, Two Need Help"
The cost of cancer care
and finding legal and financial support for it
A key point to remember:
Ask your doctors to help you figure out what various procedures might cost you, out of pocket.
• Is U.S. 'Getting Its Money's Worth' When It Comes to Cancer Care? (Mike Bassett, MedPage Today, 5-31-22) "The U.S. is spending over $200 billion per year on cancer care -- roughly $600 per person, in comparison to the average of $300 per person across other high-income countries." "Cancer drug expenditures account for 37% of privately insured U.S. cancer expenditures, and U.S. cancer drug costs are greater than those of other countries. Prices for the same medications are higher in the U.S., and cancer drugs frequently increase in price after their initial launch. This phenomenon stems from the inability of Medicare to negotiate pricing, along with state laws mandating insurers to cover all approved cancer drugs regardless of cost."
• The High Cost of Cancer Drugs and What We Can Do About It (Mustaqeem Siddiqui and S. Vincent Rajkumar, Mayo Clinic Proceedings, 7-7-12) In 2011, ipilimumab (Yervoy; Bristol-Myers Squibb, New York, NY) was approved by the Food and Drug Administration (FDA) for the treatment of metastatic melanoma. The benefit in survival over and above standard treatment arms was 3.7 months in previously treated patients and 2.1 months in previously untreated patients.The cost: $120,000 for 4 doses. As staggering a figure as that is, the drug is hardly alone in its lofty price. We believe that the immense cost of contemporary cancer drugs signals even greater costs for future drugs."
• Childhood Cancer Survivors Face ‘Financial Toxicity’ (Laurie McGinley, WashPost, 8-1-18) Kristi Lowery was 13 when physicians found a grapefruit-size tumor in her back — a rare cancer called Ewing sarcoma — and treated her with an aggressive regimen of radiation and chemotherapy. Years later, she developed breast and thyroid cancer, as well as heart and lung problems, probably as a result of the radiation. Today, Lowery undergoes a daunting number of regular cancer screenings to detect additional “late effects” — secondary cancers and other health problems caused by the powerful but toxic earlier treatment. I-Chan Huang, the lead author of the St. Jude study, said that financial strains are “more widespread among pediatric cancer survivors than among survivors who were diagnosed with cancer as adults.”
• In America, Cancer Patients Endure Debt on Top of Disease (Noam N. Levey, KHN, 7-9-22) About two-thirds of adults with health care debt who’ve had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll conducted by KFF found. About 1 in 4 have declared bankruptcy or lost their home to eviction or foreclosure.
• An Arm and a Leg: The Rising Cost of Cancer Drugs and Impact on Access (Natasha B. Leighl et al., ASCO Educational Book, American Society of Clinical Oncology, 5-6-21) Cancer prices are rising and cancer drug pricing does not correlate with value or clinical benefit. Cancer Groundshot proposes that we improve outcomes for today's patients with cancer, including broader global access for high-value treatments, promotion of affordable cancer control strategies, and reduction of cancer morbidity and mortality through low-cost prevention and screening initiatives. Oncologists can promote value-based care by following evidence-based clinical guidelines that avoid low-value treatments.
• High Cost of Cancer Treatment (Asbestos.com) Life-saving surgeries and the latest therapies are extending the lives of cancer patients — but only those who can afford them. The most expensive cancer drug: Folotyn, which is approved to treat peripheral T-cell lymphoma, a rare blood cancer that can cause death. A healthcare professional must administer Folotyn, and patients are typically given 45 vials of the drug annually. The list price for a vial is $5,880, bringing the total annual cost to $793,870.
• ‘Kicking You When You’re Down’: Many Cancer Patients Pay Dearly for Parking (Rebecca J. Ritzel, KHN, 5-17-21) Patients often fork over payments comparable to valet rates to park while receiving care. A recent study found that some of the country’s most prestigious cancer centers charge nearly $1,700 for parking over the course of treatment for some types of the disease.
• CancerCare Counseling. Support Groups. Education. Financial Assistance.
• Learning Medicare’s ABCDs (Kate Yandell, Cancer Today, 9-18-20) Medicare was established to help provide affordable health care coverage for older Americans. But Medicare beneficiaries with cancer can still face financial burdens related to their care.
• Quick Guide to Medicare (Triage Cancer)
• Cancer Scholarships (FinAid) Provides information about scholarships for cancer patients, cancer survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment.
• Co-Pay Relief (the Patient Advocate Foundation)
• Financial Resources (Cancer.net)
• Give Forward (personalized online fundraising)
• How to Find Financial Assistance (info, Susan G. Komen)
• Needy Meds. Find help with the cost of medicine.
• Resource List, RIP Medical Debt Check this out!
• Osto Group. Ostomy Products to the Uninsured. All you pay is shipping and handling. Call 877-678-6690
• Partnership for Prescription Assistance (PPA), connecting consumers to assistance programs, free.
• Patient Advocate Foundation (PAF). Solving insurance and healthcare access problems since 1966.
• Prescription Drug Assistance (info, Susan G. Komen)
• State Health Insurance Assistance Program (SHIP Center, providing local help with Medicare)
• Tips for Organizing Financial Information (Cancer.net)
• Understanding health insurance (info, Susan G. Komen)
• Sources of Financial Assistance (CancerCare) Spend some time exploring this helpful site.
• NeedyMeds (Find help with the cost of medicine)
• Partnership for Prescription Assistance (PPA, may help patients who are uninsured or underinsured access the medicines they need through the program that is right for them – free of charge)
• Prescription Assistance (HealthFinder.gov).
• RxAssist (Patient Assistance Program Center)
• Frequently asked questions about Patience Assistance Programs (RxAssist)
• Leukemia and Lymphoma Society This links to LLS's page about financial support, including co-pay assistance, financial assistance for CML patients, patient travel assistance program, etc.)
• The Pink Fund (provides cost-of-living expenses to breast cancer patients so they can focus on healing, raising their families, and returning to work)
• The SAM Fund (support for young adult cancer survivors)
• Prostheses Resources (CancerCare
• Cancer on a Shoestring
---Conquering insurance issues and problems
---Financial assistance for those in need (if the links here are as helpful as they look, you might want to start here--help with payment for medications, for transportation and lodging, and for treatments.
---Insurance legislation (HIPAA, COBRA, GINA, ACA)
---Self-employed, with cancer
---Your legal rights in the workplace: Cancer and the ADA, FMLA. Americans with Disability Act (ADA), Family and Medical Leave Act (FMLA), The Federal Rehabilitation Act.
---Filing for disability due to cancer
• National Cancer Legal Services Network (NCLSN) Click on services directory.
• Cancer Linc (Linking people with resources that ease the day-to-day challenge of cancer care)
• Nearly half of cancer patients in Medicare Part D don’t take life-saving medication when their prescription costs more than $2,000 to fill. (Leukemia & Lyphoma Society) "Some blood cancer drugs cost Medicare Part D patients as much as $16,000 out-of-pocket each year. That amounts to more than half of the income of the average Medicare patient. Patients who must pay at least $2,000 out-of-pocket for their cancer care are five times more likely to abandon their treatment. We need to cap Medicare Part D costs and let seniors spread their costs throughout the year."
• Cancer’s Complications: Confusing Bills, Maddening Errors And Endless Phone Calls (Anna Gorman, KHN, 2-27-19) When Carol Marley was diagnosed with pancreatic cancer, she didn’t anticipate so many bills, or so many billing mistakes. After all, she is a hospital nurse with good, private insurance that allowed her access to high-quality doctors and medical centers. But an $18,400 chemotherapy bill was submitted to an insurer with missing information and then denied because it arrived late. A $870 MRI bill denied because the provider said there had been no preauthorization....
“It’s not any one individual. It’s not any one system or provider,” she says. “The whole system is messed up. … There’s no recourse for me except to just keep making phone calls.” Sometimes there are errors. Part of the problem, she contends, is that one insurance company covers visits with Ascension providers and hospitals and another company covers pharmacy claims and specialty drugs and providers outside of the Ascension network. Some of the bills, including one for $1,400 from an ER visit — were sent to the wrong insurer, she said. She now deals with "convoluted medical bills that fill multiple binders, depleted savings accounts that destroy early retirement plans, and so, so many phone calls with insurers and medical providers."
• The High Cost of Cancer Treatment (Peter Moore, AARP the magazine, June/July 2018) "Cancers occur at the cellular level, with abnormal cells dividing and spreading. Containing the cancer and killing those abnormal cells without damaging nearby healthy cells often requires a range of treatments over an extended period of time — lengthy radiation, complicated surgeries, costly chemotherapy, plus other strong medications to supercharge your immunity. New cancer treatments emerge routinely, but with new hope comes even more cost: 11 of the 12 cancer drugs that the Food and Drug Administration approved in 2012 were priced at more than $100,000 per year." (Having a bad heart is cheaper.) The financial navigators hospitals hire often have only a high school diploma. “And those individuals are cheap, right? But they don’t know what they don’t know.”
• Childhood Cancer Survivors Face ‘Financial Toxicity’ (Laurie McGinley, WashPost, 8-1-18) Kristi Lowery was 13 when physicians found a grapefruit-size tumor in her back — a rare cancer called Ewing sarcoma — and treated her with an aggressive regimen of radiation and chemotherapy. Years later, she developed breast and thyroid cancer, as well as heart and lung problems, probably as a result of the radiation. Today, Lowery undergoes a daunting number of regular cancer screenings to detect additional “late effects” — secondary cancers and other health problems caused by the powerful but toxic earlier treatment. I-Chan Huang, the lead author of the St. Jude study, said that financial strains are “more widespread among pediatric cancer survivors than among survivors who were diagnosed with cancer as adults.”
• St. Jude Hoards Billions While Many of Its Families Drain Their Savings (David Armstrong and Ryan Gabrielson, ProPublica, 11-12-21) St. Jude Children’s Research Hospital promises not to bill families. But the cost of having a child at the hospital for cancer care leaves some families so strapped for money that parents share tips on spending nights in the parking lot.
• How Much Does Breast Cancer Treatment Cost? (Cost Helper Health)
• Understanding the Costs Related to Cancer Care (Cancer.Net)
• Managing the Cost of Cancer Treatment (Cancer Support Community) Click on the three red boxes for fuller information.
• States Question Costs Of Middlemen That Manage Medicaid Drug Benefits (Alison Kodjak, Shots, NPR, 8-8-18) "For example, Ohio paid the PBM $273.50 per unit for the generic version of Gleevec, a drug that treats leukemia and other cancers, while pharmacies reported the wholesale price of the drug was $83.69. In other words, the PBM charged the state more than the three times the price of the drug....If the analysis is released, it will offer an unprecedented look into the opaque world of pharmacy benefit managers and the mechanics of drug pricing....West Virginia last year stopped using pharmacy benefit managers altogether. And Kentucky is also doing an analysis of its costs while lawmakers consider legislation that would require pharmacy benefit managers that contract with Medicaid to report details of their costs to the state and ensure they pay independent pharmacies a fair price."
• Sorry about your Stage 3 cancer. Here's a bill for $21,000 in charges you thought were covered (David Lazarus, LA Times, 8-7-18) When Michele Brough was diagnosed with Stage 3 breast cancer in April, her oncologist wasted no time in reaching out to her insurer, Anthem Blue Cross and Blue Shield, to obtain pre-approval for a drug that would strengthen her immune system to better withstand chemotherapy....It wasn’t until after the second round of treatment that Brough’s oncologist informed her Anthem wasn’t covering the injections, sticking her with the staggering cost of $7,000 for each shot....The only other thing I’d advise in a situation like this is to bring in a professional patient advocate, a person who specializes in navigating the twists and turns of the healthcare system, including billing issues....Many group insurance plans will cover the cost of a patient advocate — ask your employer. Otherwise, the advocate might charge on an hourly basis or receive up to a third of whatever savings can be secured."
Some places to search for a local patient advocate:
---National Assn. of Healthcare Advocacy Consultants
---Alliance of Claims Assistance Professionals
---AdvoConnection Directory
• How to Find, Interview, and Choose a Patient Advocate (VeryWell Health) While private patient advocacy is a growing career, patient advocates are still not easy to find.
• Do High-Deductible Plans Make Even Cancer Care a Luxury Item? (Rosemarie Day, CommonHealth, WBUR, 5-23-18) "When I went in for my regular screening in the fall of 2016, the high resolution images detected some tiny, suspicious cells that I soon learned was very early-stage breast cancer... if I had waited a year or even six months for the additional testing and treatment, it could have been a totally different story...That’s why I was so disheartened to read about a recent study that found American women are increasingly deferring tests — and even treatments — for breast cancer because their health insurance plans have such high deductibles....Compounding the problem, high deductible plans are gaining popularity....For serious conditions, like breast cancer, even short gaps between diagnosis and treatment can complicate matters....In breast cancer, the earlier the disease is diagnosed and treated, the higher the chances for long-term survival.
• Paying for Medical Care (USA.gov) Help with medical bills: Medicaid and CHIP (Health Care for Children), Social Security and Medicare, Medicaid for Adults, Help with Prescription Drug Costs, and other resources (such as community clinics, state and local social service agencies, National Cancer Institute and NIH clinical trials, and so on.
• Finding and Paying for Treatment(American Cancer Society) Cancer Helpline: 800.227.2345
• Understanding Health Insurance (American Cancer Society) Information on issues surrounding private and government insurance plans, as well as other possible sources of financial help for people with cancer.
• Understanding Financial and Legal Matters (American Cancer Society) Things you can do to protect yourself and your family, both legally and financially, if you have cancer. Learn about laws that protect your rights and professionals who can help you navigate the legal and financial systems.
• The Cost of Cancer Drugs (Lesley Stahl, 60 Minutes, 6-21-15) Lesley Stahl discovers the shock and anxiety of a cancer diagnosis can be followed by a second jolt: the astronomical price of cancer drugs (transcript of show on 60 Minutes Overtime). Dr. Leonard Saltz: "We're in a situation where a cancer diagnosis is one of the leading causes of personal bankruptcy." "... we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs." Dr. Peter Bach: "Medicare has to pay exactly what the drug company charges. Whatever that number is." "The challenge, Dr. Saltz at Sloan Kettering says, is knowing where to draw the line between how long a drug extends life and how much it costs." "High cancer drug prices are harming patients because either you come up with the money, or you die." Gleevec as a life-saving drug that makes patients a slave to it and its high cost. Dr. Leonard Saltz: " I don't know where that line is, but we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs." "Dr. Kantarjian says one thing that has to change is the law that prevents Medicare from negotiating for lower prices."
"Another reason drug prices are so expensive is that according to an independent study, the single biggest source of income for private practice oncologists is the commission they make from cancer drugs. They're the ones who buy them wholesale from the pharmaceutical companies, and sell them retail to their patients. The mark-up for Medicare patients is guaranteed by law: the average in the case of Zaltrap was six percent....What that does is create a very substantial incentive to use a more expensive drug...."
• Sticker Shock Forces Thousands of Cancer Patients to Skip Drugs, Skimp on Treatment (Liz Szabo, Kaiser Health News, 3-15-17) With new cancer drugs commonly priced at $100,000 a year or more, hundreds of thousands of cancer patients are delaying care, cutting their pills in half, or skipping drug treatment entirely. The jaw-dropping costs of new cancer medications have led to widespread criticism of the pharmaceutical industry, on Capitol Hill and beyond. Six of the 39 cancer drugs on the market in 2010 doubled or tripled in price by 2016; one quadrupled in price; one drug’s price increased eightfold.
• Cascade Of Costs Could Push New Gene Therapy Above $1 Million Per Patient (Liz Szabo, Kaiser Health News, 10-17-17) "Outrage over the high cost of cancer care has focused on skyrocketing drug prices, including the $475,000 price tag for the country’s first gene therapy, Novartis’ Kymriah, a leukemia treatment approved in August. But the total costs of Kymriah and the 21 similar drugs in development — known as CAR T-cell therapies — will be far higher than many have imagined, reaching $1 million or more per patient, according to leading cancer experts. The next CAR T-cell drug could be approved as soon as November."
• Your Legal Rights in the Workplace: Cancer and the ADA, FMLA (Cancer and Careers). A federal law that most people have heard of, but don't usually think has anything to do with a disease like cancer is the Americans with Disabilities Act (ADA). However, the ADA prohibits all types of discrimination based on actual disability, a perceived history of a disability, a misperception of current disability, or a history of disability. (Doesn't apply to all employers; read the details.) The Family Medical Leave Act of 1993 (FMLA) gives you the right to take time off due to illness or caring for an ill dependent without losing your job. The Federal Rehabilitation Act, prohibits employers from discriminating against employees because they have cancer. This act, however, applies only to employees of the federal government, as well as private and public employers who receive public funds.
• Cancer, bankruptcy and death: study finds a link (Diane Mapes, Fred Hutch, 1-25-16) A new Fred Hutch study finds that the 3 percent of cancer patients who go bankrupt are much more likely to die.
• Advance Care Planning (M.D. Anderson Center) How can I make my health care preferences known?
• Patients with Thyroid Cancer Are at Higher Risk of Bankruptcy than Patients with Other Types of Cancer, or Those Without Cancer (American Thyroid Association, July 2013)
• Uncovering the Hidden Costs of Cancer (Liz Seegert, A Woman's Health, Sept. 2012) Not only is cancer a devastating disease but it can quickly become a financial burden with many expenses not covered by insurance--including travel expenses, increases to daily cost of living, and complementary therapies to support overall wellness—all of which come at a time when many patients experience a loss of income.
• The cost of beating cancer is frighteningly high (Eric Pianin, The Week, from The Financial Times, 3-19-16) The personal financial implications for many cancer survivors — including those with health insurance — often are staggering. "For example, in 2014 practically every new cancer-treatment drug approved by the Food and Drug Administration was priced at more than $120,000 a year, according to one study. And the cost for each additional year lived by a patient as a result of new drugs increased four-fold — from $54,000 in 1995 to $207,000 in 2013....Last July, more than 100 cancer specialists signed an article published by the journal Mayo Clinic Proceedings expressing outrage over the high cost of new cancer drugs. ...The surging cost of biologic drugs for the treatment of cancer, the Hepatitis C virus, and other deadly diseases is draining the budgets of Medicare, Medicaid, and veterans' health programs."
• Fifth Season Financial provides loans to people living with advanced cancer, secured solely by the face value of their life insurance policy. The goal of our “Loans for Living” program is to provide individuals access to discretionary cash locked up in their life insurance policy. Unlike a traditional loan, all fees are paid later out of your policy proceeds, and in more than 90% of our cases funds remain to pass on to your beneficiaries.
• National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.
• This Star Won't Go Out, a family foundation that provides financial support to families of children with cancer, providing funds to help pay for travel, a mortgage or rent check, and other cost of living expenses. The story behind the story: My sister Esther inspired ‘The Fault in Our Stars.’ The movie is her sequel. (Evangeline Earl, Washington Post, 6-15-14)
• 7 tips for cancer patients worrying about the cost of their care (Laurie McGinley, WaPo, 4-11-16)
• Tackling the financial toll of cancer, one patient at a time (Laurie McGinley, WaPo, 4-10-16) A new type of expert helps individuals get the care they need despite often immense costs.
• Legal & Financial Impacts of Cancer (M.D. Anderson Center) The Americans with Disabilities Act (ADA) has several protections for cancer survivors who are employed or seeking jobs. Know your rights to make sure you’re not being discriminated against because of your health status.
• Advanced Illness: Financial Guidance for Cancer Survivors and Their Families (PDF, American Cancer Society and National Endowment for Financial Education) You may want to look at some of these sections, such as those on financial resources, before illness strikes.)
• Accessing sources of support (info, Susan G. Komen)
• Cancer charities, good and bad:
---Charity Watches Top-Rated Charities (includes 13 cancer charities)
---4 Cancer Charities Are Accused of Fraud (Rebecca Ruiz, NY Times, 5-19-15)
• Cancer Meds Often Bring Big Out-Of-Pocket Costs For Patients, Report Finds (KHN) Cancer patients shopping on federal and state insurance marketplaces often find it difficult to determine whether their drugs are covered and how much they will pay for them, the advocacy arm of the American Cancer Society says in a report that also calls on regulators to restrict how much insurers can charge patients for medications. Most insurance plans in the six states that were examined placed all or nearly all of the 22 medications studied into payment “tiers” that require the biggest out-of-pocket costs by patients. Those drugs include some well-known treatments, such as Gleevec for certain types of leukemia and Herceptin for breast cancer, and even some generics. Often, that tier means patients pay a percentage of the cost of the drugs, rather than a flat dollar amount, which is more common for drugs placed into lower cost-sharing categories. Read full article.
Cancer research, education, and advocacy organizations
(including foundations that support research)
• Largest study of its kind to investigate why Black women are more likely to die from most types of cancer (Jen Christensen, CNN, 5-7-24) The American Cancer Society is seeking participants for what may be the largest national study of its kind, one that aims to solve the mystery of why Black women have the lowest survival rate of any racial or ethnic group in the US for most cancers.
• Website designed by nurses aims to improve cancer research (Steve Ford, Nursing Times, 7-19-24) Nurses from two cancer charities have led development of a new website that aims to describe in simple terms how teenagers and young adults in England can take part in clinical research. Young people affected by cancer treated at the Freeman Hospital in Newcastle have joined forces with Teenage Cancer Trust and Cancer Research UK to create and launch the website Teenage and Young Adult Research, to demystify complex information into patient-friendly language that--to provide an age-appropriate resource that helps inform TYAs about Clinical Trials, Biobanking and Genomics.
• Poster Children: When Cancer Charities Mislead to Raise Funds (Jane Roper, WBUR, 12-18-15) Tugging on people’s heartstrings -- which the idea of sick children has a tendency to do -- is far more likely to open purse strings. But...it’s unethical to lure potential customers on one thing and deliver something else. "If you’d like to support childhood cancer research and services specifically, there are wonderful organizations like St. Baldrick’s Foundation, Alex’s Lemonade Stand and the McKenna Claire Foundation, to name just a few, that are completely dedicated to that cause — and therefore completely justified in using images of children in their marketing."
• Harvard Project Seeks 'Exceptional Responder' Cancer Patients to Figure Out What Went Right (Carey Goldberg, WBUR, CommonHealth, 6-21-18) Story about the first national registry for exceedingly rare patients (NEER Study) who beat overwhelming odds and respond mysteriously — even uniquely — well to treatments that failed to help others. They'll look at the patient's DNA, the tumor's DNA, medical records, lifestyle, attitude, even religion, zip code (to check for environmental factors like air and water pollution), even posts on social media. Which patients are accepted to the project will vary, depending on the cancer. See Network of Enigmatic Exceptional Responders (NEER Study), People-Powered Medicine).
• Sacrifice Zones: Mapping Cancer-Causing Industrial Air Pollution ( Lylla Younes, Ava Kofman, Al Shaw and Lisa Song, ProPublica, Polluters are turning neighborhoods into “sacrifice zones” where residents breathe in carcinogens. The EPA allows it. Last year, ProPublica revealed more than 1,000 hot spots of carcinogenic industrial air pollution. Now we’re releasing the data behind that analysis. More than a thousand people talked to ProPublica about living in hot spots for cancer-causing air pollution. Most never got a warning from the EPA. They are rallying neighbors, packing civic meetings and signing petitions for reform. An important series, in English and in Spanish.
• Cancer’s New Battleground (Joanne Silberner, The World, PRI radio, 2012) In developing countries, the fight against cancer has barely begun. In this series led by veteran medical reporter Joanne Silberner, we meet patients, doctors, and public health advocates waging a new campaign against a global killer. From a 2012 infographic, World infographic : "The vast bulk of donor health funding to low- and middle-income countries goes to HIV/AIDS, TB, and malaria, despite the larger death toll from cancer."
• Alex's Lemonade Stand Foundation (fighting childhood cancer, one cup at a time)
• American Childhood Cancer Organization (ACCO)
• American Cancer Society. Spends a lot on fundraising, according to Charity Navigator. Publishes several books.
• American Institute for Cancer Research (AICR). See especially Reduce Your Risk. Diet, weight, and physical activity: Choose mostly plant foods, limit red meat and avoid processed meat. Aim for a healthy weight. Be physically active every day for at least 30 minutes.
• American Society for Blood and Marrow Transplantation (ASBMT)
• American Society of Clinical Oncology (ASCO). But see ASCO pumps up a one-sided view of lung cancer screening: Here’s what most of the coverage missed (HealthNewsReview)
• Association of American Cancer Institutes (AACI)
• Association of Residents in Radiology Oncology. (ASTRO)
• Bladder Cancer Advocacy Network (BCAN)
• Cancer + Careers
• CancerCare (Counseling. Support Groups. Education. Financial Assistance.)
• Cancer Coalition of South Georgia Fighting cancer...Right here. Right now.
• Cancer Commons A nonprofit giving patients the information they need.
• Care Index (Guide to Internet Resources for Cancer)
• Cancer Research Institute (CRI) specializing in cancer immunotherapy
• Cancer Hope Network Provides one-on-one support (matched cancer survivors) to people undergoing treatment for cancer
• Cancer Support Community So that no one faces cancer alone.
• Centers for Disease Control and Prevention (CDC) What You Need to Know Fact Sheet and other information about breast cancer.
Find out if you qualify for free or low-cost breast and cervical cancer screenings through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), and contact the program in your state, tribe, or territory.
• Children's Cause (advocacy group--the voice of children with cancer)
• City of Hope Comprehensive Cancer Center (Duarte, CA)
• Cold Spring Harbor Laboratory (research programs in cancer, neuroscience, plant biology)
• Colon Cancer Alliance Inform. Prevent. Support
• Concern Foundation (funding promising cancer researchers in the fields of immunology, immunotherapy and other closely related areas of basic cancer research)
• Conquer Cancer Foundation (American Society of Clinical Oncology, funding medical research and sharing information about same)
• Cord Blood Banking. Stem cells in your baby's umbilical cord blood can replace damaged cells inside the body. These new cells repair wounds, restore lost brain functions and increase healthy blood count. Consider donating cord blood at a public bank (for use for matching patients with a medical condition and for clinical research) or with a private bank (where your child's stem cells are available for any future treatment needs) Download free Your Guide to Cord Blood Banking. Cord blood treats over 80 diseases including leukemia and lymphoma. Donations are painless and are being used to save the lives of children and adults around the world.
• Cancer Research UK. No, doctors did not “inject HIV into a dying girl” to treat her cancer (Kat Arney, Cancer Research UK, 6-25-13). "They took immune cells out of the patient, treated them with the virus in the lab, then injected the modified cells back in."
• Congressionally Directed Medical Research Programs (CDMRP) (Department of Defense)
• CureSearch for Children's Cancer
• Damon Runyon Cancer Research Foundation finds and funds new generations of breakthrough cancer researchers
• Dana-Farber Cancer Institute supports adult and pediatric cancer treatment and research
• Dr. Susan Love Research Foundation (for a future without breast cancer)
• Fight Colorectal Cancer (Get behind a cure for colon and rectal cancer)
• Free to Breathe (raising funds for lung cancer research and helping patients with free resources)
• HealthWell Foundation When health insurance is note enough. Helps reduce financial barriers to care for underinsured patients with chronic or life-altering diseases.
• The Hope Foundation ("Because answers to cancers come from clinical trials -- the philanthropic arm of SWOG, a national cancer research cooperative group that leads patient-centered clinical trials)
• Huntington Medical Research Institutes (a medical research institute in Pasadena, CA, with programs in neural engineering, imaging and spectroscopy)
• Leukemia & Lymphoma Society
• LiveStrong Foundation (formerly Lance Armstrong Foundation)
• The Lustgarten Foundation for Pancreatic Cancer Research Funding research on pancreatic cancer.
• Lung Cancer Alliance Saving lives, advancing research, empowering people.
• McKenna Claire Foundation (for pediatric brain cancer)
• Memorial Sloan-Kettering Cancer Center
• Mesothelioma Applied Research Foundation
• Midwest Athletes Against Childhood Cancer (MACC Fund, Teaming up to cure childhood cancer through research)
• Minnesota Ovarian Cancer Alliance (MOCA) Funding research and making a difference against ovarian cancer
• Moffitt Cancer Center (Tampa, Florida--medical research)
• Multiple Myeloma Research Foundation Powerful thinking advances the cure.
• National Breast Cancer Coalition
• National Cancer Institute (NCI)
• National Coalition for Cancer Survivorship (NCCC) "We advocate for quality cancer care for all individuals touched by cancer." See blog, Cancer Policy Matters.
• National Foundation for Cancer Research (NFCR)
• National Lymphedema Network (NLN)
• National Ovarian Cancer Coalition (break the silence on ovarian cancer)
• National Patient Advocate Foundation (NPAF)
• National Pediatric Cancer Foundation supporting cancer research
• Neuroendocrine Tumor (NET) Research Foundation
• ONCLive
• Oncolink. See Oncolink's blogs.
• Oncology Nursing Society (ONS)
• Oncology Professional Rebels Network (ONCO-PRN) ("Be the change that you wish to see in the [oncology and palliative] world." -- Mahatma Gandhi [adapted]
• On Top of Cancer (information but parts of website hard to read, colors are so similar and faint)
• Ovarian Cancer National Alliance
• Ovarian Cancer Research Fund Alliance
• Pancreatic Cancer Action Network Advance Research, Support Patients, Create Hope
• Pediatric Brain Tumor Foundation Working to eliminate the challenges of childhood brain tumors
• Pediatric Cancer Research Foundation
• Prevent Cancer Foundation
• Prostate Cancer Foundation
• R.A. Bloch Cancer Foundation. Call the Bloch Cancer Hotline at 800-433-0464
• St. Baldrick's Foundation (supporting research in childhood cancer)
• Sarcoma Foundation of America (finding the cure in our time)
• Science Magazine: Frontiers in cancer therapy (special issue, March 17, 2017)
• The Sister Study (NIH, National Institute of Environmental Health Sciences) A Study of the Environmental and Genetic Risk Factors for Breast Cancer.
• Skin Cancer Foundation
• St. Baldrick's Foundation Curing cancer in kids isn’t enough — by the time they’re 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions because of their childhood cancer treatment. St Baldrick’s is raising money and raising awareness to change that. About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For kids? Almost none, because childhood cancer drugs are not profitable.
• Susan B. Komen Breast Cancer Foundation
• Triage Cacer Provides free education on the practical and legal issues that arise after a cancer diagnosis (for example, state laws, state-specific estate planning kits,
• Triage Cancer provides education and resources on cancer survivorship to survivors, caregivers, and healthcare professionals4
Make-a-Wish and other wish fulfillment organizations
(lists, links, and info about)Each site below lists several make-a-wish type organizations,
some for children with cancer, at least one for adults with cancer.
Visiting a family that is overwhelmed? Do some research here for
organizations that might help lighten their load a little.
• Preston Robert Tisch Brain Tumor Center's links
• Wish Fulfillment Organizations for People with Cancer (Cancer.Net's links and descriptions)
• Intermountain Healthcare's links
• Karen Wyckoff Rein in Sarcoma Foundation
• Wish Fulfillment Organizations (Best of the Web links)
• Mesothelioma Cancer Alliance links to wish fulfillment organizations (many of them for elderly patients)
• Wishes (Childhood Leukemia Foundation links)
Travel support
See also Patient assistance and medication assistance programs
• Air Care Alliance (nationwide volunteers)
• Air Charity Network
• Angel Flight Pilots arrange free air transportation for any legitimate, charitable, medically related need (not just cancer).
• Corporate Angel Network (CAN). Cancer patients fly free in empty seats on corporate jets.
• Find Transportation Assistance Nonprofits and Charities (Great Nonprofits) They have gazillions of listings. I entered the (pretty big) town where I live (at the top of the page) and quickly got a lot of entries
• How to Find Non-Emergency Patient Transportation Services (Patients Rising Concierge) A very helpful page. There's Emergency medical transportation (ambulance services for emergency medical conditions) and there's Non-emergency medical transportation (NEMT), with useful explanations of who can get covered for which under Medicare, Medicaid, and other health insurance plans and the names of some transport providers.
See also NEMT Brokers (Route Genie), which names specific providers in some states.
• Mercy Medical Angels Removes the barrier to long-distance medical care with transportation on the ground and in the air.
• Miracle Flights Provides financial assistance so seriously ill children can receive proper medical care and get second opinions
• Road to Recovery. Providing rides to cancer patients. 24/7 Lifeline 800.227.2345 (live chat). Less active because of Covid
• Transportation: What Caregivers Need to Know (AARP, 1-17-20) How to help your loved one get around when you can't provide a ride
• Mobility Managers: Transportation Coordinators for Older Adults, People with Disabilities, Veterans, and Other Members of the Riding Public (M. Douglas Birnie and James J. McLary, AARP Public Policy Institute). About policy, rather than practical tips for people who need a lift, but possibly useful in the long run.
Force Empowered (fighting hereditary breast and ovarian cancer)
Jessie Gruman, video of a really helpful 44-minute talk about facing a devastating diagnosis (for cancer as well as other diseases) she gives at the Eugene, Oregon, Public Library. (She's author of AfterShock: What to Do When the Doctor Gives You--Or Someone You Love--a Devastating Diagnosis
HealthCentral has sites (and blogs) about many conditions and diseases, including Breast Cancer,HIV/AIDS, Prostate, and Skin Cancer. This looks like a good place to start finding out about a health problem. Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources.
The Intelligence of Emotions: How Storytelling Rewires Us and Why Befriending Our Neediness Is Essential for Happiness Maria Popova (Brain Pickings, 11-23-15) writes about philosopher Martha Nussbaum, whom she also quotes: "We cannot understand [a person’s] love … without knowing a great deal about the history of patterns of attachment that extend back into [the person’s] childhood. Past loves shadow present attachments, and take up residence within them. This, in turn, suggests that in order to talk well about them we will need to turn to texts that contain a narrative dimension, thus deepening and refining our grasp of ourselves as beings with a complicated temporal history." And “Emotions are not just the fuel that powers the psychological mechanism of a reasoning creature, they are parts, highly complex and messy parts, of this creature’s reasoning itself.”
• Storytelling to heal: Latino cancer patients participate in digital storytelling. (Fred Hutch) "In this study we learned that digital storytelling is a powerful tool for Hispanic/Latino disease survivors. Storytellers mentioned that the process of creating their digital stories had a therapeutic effect; it allowed them to reflect on a past experience with a disease in a way they had never had the chance to do so. It also gave them the chance to connect with others who had gone through a similar experience."
• Laurie Foley speaks on the topic, “The Courage to Be Mortal” (Patty Digh, 37 Days, 2-5-16) "So I believe that this question, “is this energizing or is it draining?”, is really the ultimate question that we can ask to manage energy in a crisis....MY power – lies in making a choice, not in having control."
Lessons on dealing with critical illness (Linda Knapp, Seattle Times, 5-17-06). After many colds, and spiking fever, Linda Knapp fell into a coma, and awoke completely deaf, unable to see from one eye, and barely able to function. What she learned from experiencing severe bacterial meningitis infection. "Linda says the consistent, loving care she received from her family was instrumental in her recovery."
LiveStrong (information and guidance about your options, what to expect and what to ask)
Medical Malpractice
• Medical Liability/Medical Malpractice Laws (National Conference of State Legislatures, or NCSL)
• Medical Liability & Malpractice (NCSL)
• Medical Malpractice Center (888-906-3651) Cancer is the most common form of medical misdiagnosis. See details.
• 7 Commonly Misdiagnosed Illnesses (AARP) Lupus, Parkinson's disease, fibromyalgia, Lyme disease, multiple sclerosis, celiac disease, chronic fatigue syndrome
• Johns Hopkins Malpractice Study: Surgical ‘Never Events’ Occur At Least 4,000 Times per Year Researchers advocate public reporting of mistakes
• 20 Tips to Help Prevent Medical Errors (Patient Fact Sheet, Agency for Healthcare Research and Quality)
• Offering Thanks for Caregivers (Susan Gubar, Living With Cancer, NY Times Well blog, 11-21-12) These receptionists, nurses and nurse practitioners are actually caregivers, not caretakers. They come into our lives without second names, but their dedication helps innumerable cancer patients endure the unendurable.
• Riding the Cancer Coaster: Survival Guide for Teens
• Radioactive Disclosure (Randy Cohen, NY Times Magazine, 12-10-09) On whether a patient getting radioactive-iodine therapy should stay in a hotel. (No.)
• Joel Siegel's advice for cancer patients (Roger Ebert, 6-29-07). What Joel Siegel wrote for an American Cancer Society newsletter.)
• Simms/Mann UCLA Center for Integrative Oncology (articles, links, information, and video lectures)
• What to do after a cancer diagnosis (Betsy Agnvall, AARP Bulletin, March 2016) First steps.
• 5 Stories of Cancer Survival (AARP Bulletin, March 2016)
• How Yoga Helps Cancer Patients and Cancer Survivors (Yoga U). See also Cancer Research UK on Yoga and Facing Cancer with Courage (Carol Krucoff, Yoga Journal, 8-28-07)
Cancer survivor stories
• Cancer Progress Report Survivors (American Association for Cancer Research)
• Adrienne Skinner: Living Life to the Fullest Thanks to Research (AACR). One of many stories.
• 10 Powerful Survivor Stories From 2016 (American Cancer Society)
• Survivor Stories (National Coalition for Cancer Survivorship)
• Colon cancer survivor stories (Colon Cancer Coalition)
• Metastatic Breast Cancer Stories (SHARE, for women facing breast cancer and ovarian cancers)
• Against All Odds: 14 Cancer Stories Through A Survivor’s Lens
• Beating the Odds: Cancer Survivors’ Success Stories (Kristine Crane, U.S. News, 12-9-14) How science, luck and a positive outlook help people beat cancer.
• Lung cancer survivors: stories of hope and courage (Lung Cancer Foundation of America, LCFA)
• Metastatic breast cancer survivors, 10+ year stories (Metastatic Breast Cancer Network)
• Stage 4 Breast Cancer: Stories of Survivorship (Healthline.com)
• The Ruse That Never Quits: Deliberate Deception and Cancer Treatment Centers of America (LymphomaInfo.net)
Checking out clinical trials
•Learning From the Lazarus Effect (Gareth Cook, Health Issue, The New Anatomy of Cancer, NY Times Magazine, 5-12-16) Most clinical trials for cancer drugs are failures. But for a handful of patients, a drug proves to be nearly a cure. What can science learn from these “exceptional responders”?
• Find NCI-Supported Clinical Trials
• Search the clinical studies at NIH (or call 1-800-411-1222 to ask if you might qualify to participate in a research protocol).
• A drive to increase diversity in clinical trials Download STAT's free e-book. The lack of diversity has significant costs beyond financial implications, as it hinders the ability to generalize research findings to the broader U.S. population, makes it difficult to recruit enough subjects for studies, and fosters distrust of doctors and medical research among underrepresented groups.
• ClinicalTrials.gov (National Cancer Institute) Search for studies in this registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Search by city, state, and type of cancer.
• NCI's National Clinical Trials Network
• Where Can You Find Potential Clinical Trials? (Frank Lalli, Parade, 5-6-16)
• 5 Questions to Ask Before Joining a Clinical Trial (Frank Lalli, Parade, 5-6-16)
1) Exactly what is being studied?
2) How do the risks, side effects, and benefits of this trial compare to my current treatment?
3) How often will I have to visit the hospital or clinic?
4) Will you pay for my participation and cover my expenses?
5) If I benefit from a treatment, such as a drug or medical device, will I be able to keep getting it after the trial ends?
• How to Find a Cancer Treatment Trial: A 10-Step Guide (National Cancer Institute)
• Transforming NCI’s Clinical Trials Programs
• Participate in Clinical Studies (NIH Clinical Center, Bethesda MD)
• How One Tiny Facebook Group Became a Life-Saving Hotbed of Cutting Edge Colon Cancer Clinical Trials Brent Lambert, FEELGuide, 12-30-16) "How a Facebook group of cancer patients and their loved ones, called COLONTOWN...has become a global leader in providing the most cutting edge information on the latest research and clinical trials that even most doctors don’t know about."
• Killing Cancer, Part 1 (Scott Pelley, 60 Minutes, 3-29-15). 60 Minutes follows brain cancer patients in a Duke University clinical trial of a therapy that uses a re-engineered polio virus to kill cancer cells, awakening the power of the body's immune system, by awakening solid tumors with polio virus. Here's Part 2. With the polio trial's early success the team raised the dose in hope of an even better result. But that's when the polio trial encountered its first tragedies. Scott Pelley reports.
• The NIH and the NIH Clinical Center
• The Power of Genes, and the Line Between Biology and Destiny (Terry Gross, Fresh Air, 5-16-16) As researchers work to understand the human genome, many questions remain, including, perhaps, the most fundamental: Just how much of the human experience is determined before we are already born, by our genes, and how much is dependent upon external environmental factors? Oncologist Siddhartha Mukherjee tells Terry Gross the answer to that question is complicated. "Biology is not destiny," Mukherjee explains. "But some aspects of biology — and in fact some aspects of destiny — are commanded very strongly by genes." The degree to which biology governs our lives is the subject of Mukherjee's new book, The Gene: An Intimate History.
Genetics is changing the way we think about and treat cancer. "There's a substantial degree of reorganization in the way we fundamentally think about cancer that's going on right now, some of it related or a large part of it related through genetics. If you look at the mutations in individual cancers, you might find actually that a lung cancer carries a mutation that it shares with, let's say, breast cancer, or it shares a mutation that it shares with leukemia. The question that's being asked right now in the field, which is an important question, is ... should we reorganize this old anatomical classification of cancer, you know, lung cancer, breast cancer, and base it a little bit [more] on a kind of mixed classification? Yeah, you say "breast cancer, which has these following mutations." My overall impression is that the anatomical classification isn't going to go away.
"You need multiple mutated genes in a single cell for it to become cancerous, and these mutated genes make products, proteins, and they co-opt the normalcy of a cell, and they kind of create a kind of whisper campaign, in which they co-opt the behavior of the cell, and now the cell begins to behave abnormally, divide abnormally, metabolize abnormally, ultimately leading to cancer.
• Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials by Tomasz M. Beer (a renowned oncologist) and and Larry W. Axmaker (a psychologist and cancer survivor). Check out Dr. Beer's website and blog Cancer Clinical Trials, with entries such as Cancer Clinical Trials: How to get the new treatment (5-14-12).
• Clearing Up Myths and Misconceptions about Clinical Trials (Esther Napolitano, On Cancer, Memorial Sloan Kettering)
• Clinical Trials: How they Work; Why Participate (Columbia University Medical Center)
• Should we beware the tyranny of the randomized controlled trial? (Tara Haelle, Covering Health, Jan. 2017) About an interesting piece by Jamie Holmes: Flossing and the Art of Scientific Investigation "What I found most salient in Holmes’ piece was the implication that extreme reliance on RCTs to explain and defend — or debunk — pretty much anything and everything has contributed to an erosion of trust in experts and expertise....This hyper-emphasis on the RCT as higher on the hierarchy of evidence than expert opinion, which is close to worthless in evidence-based medicine, has become overly simplistic, he says.
• Center Watch Helping People Connect with Clinical Trials. First launched in 1994, the Clinical Trials Listings Service assists patients in finding and volunteering for clinical trials. Today, CenterWatch has the largest online database of industry-sponsored global clinical trials actively seeking volunteers. For industry professionals, Center Watch provides news, and analysis, insights, training materials, and a variety of services. Search for clinical trials, learn about physicians and medical centers performing clinical research, and learn about drug therapies newly approved by the FDA. Find clinical trials by medical condition, geographic location. Find research centers by medical specialty, geographic location. Find drug information. Download detailed articles investigating and analyzing current trends in the clinical trials industry and the impact they have on the research community.
• Cancer Currents: An NCI Cancer Research Blog
• Clinical Trials (NCI), the National Cancer Institute at the National Institutes of Health (NIH), Bethesda, MD
• Cancer Clinical Trials, Q&A (NCI)
Coalition of Cancer Cooperative Groups
• The NIH Clinical Center (selections from Building 10 at 50 by Pat McNees)
• On the 50th anniversary of the NIH Clinical Center's Opening (by Pat McNees, from early draft of Building 10 at 50
• MD Anderson Center (Making Cancer History)
• Guinea-Pigging (Carl Elliott, Dept of Medical Ethics, New Yorker, 1-7-08). Healthy human subjects are in demand for drug-safety trials. But is it a living?
• Clinical Research and Clinical Trials (Medicine.Net.com, answers to common questions)
• NCI Dictionary of Cancer Terms
• Cancer Guide (Steve Dunn's site, maintained posthumously).
• Medicare Clinical Trials Policies
• Thirty Years Lost in Medical Theory (Lewis S. Coleman, on his site Stress Repair Mechanism). Read around on this site, including A Brief History of Stress Theory, for possible insights into changes in stress theory, as an overriding theory explaining disease.
• Cancer Treatment in the U.S.--just the facts (Joan W. Young). See also Ten Things Your Doctor Won't Tell You About Medical Research (download PDF)
• How Clinical Trials Saved This Cancer Patient’s Life (Future of Personal Health, June 2021). Scroll down for more stories about clinical trials.
• The Truth Wears Off (Jonah Lehrer, The New Yorker, 12-13-10). The decline of significance in results from clinical trials explained by selective reporting, regression to the mean, and positive publication bias. "Our beliefs are a form of blindness," writes Lehrer (e.g., results from trials on acupuncture are more positive in Asia than in the West). Early termination of trials that show a positive result could also enshrine a statistical fluke, adds one reader.
• Clinical trial registration Clinical trial registration is the practice of documenting clinical trials before they are performed in a clinical trials registry so as to combat publication bias and selective reporting. See also International Clinical Trials Registry Platform (ICTRP) (H/T Michael S. Altus)
• Unrealistic Optimism in Early-Phase Oncology Trials (Lynn A. Jansen, Paul S. Appelbaum, William M.P. Klein, Neil D. Weinstein, William Cook, Jessica S. Fogel, and Daniel P. Sulmasy, The Hastings Center) "Unrealistic optimism is a bias that leads people to believe, with respect to a specific event or hazard, that they are more likely to experience positive outcomes and/or less likely to experience negative outcomes than similar others."
• How to Find Clinical Trials for Experimental Cancer Treatments (Denise Grady, NY Times, 12-23-16)
Helping, advocating for, or comforting a person with cancer
• What a Friend Can Do (Cancer and Careers)
• Cancer survivor-turned-researcher advocates for patient access to medical notes (Jennifer Byrne, Healio) In her role for OpenNotes — a movement dedicated to promoting transparent communication among patients, their families and clinicians — Salmi educates hospitals and health systems about ongoing changes in patient access to their medical notes. These changes are associated with the 21st Century Cures Act’s Interoperability and Information Blocking Rule, which allows patients to view their progress notes without delay. See:
---HHS rules give patients ‘unprecedented’ access to health data (Janel Miller, Healio, 3-10-20) Two rules finalized by the HHS Office of the National Coordinator for Health Information Technology (ONC) and CMS — meant to carry out the interoperability and patient access provisions under the 21st Century Cures Act — will allow patients to access their health data using apps so that they can make better health care decisions.
• How to Help a Friend with Cancer (Kelly Corrigan, Women's Health, 9-14-12)
• Supporting a Friend Who Has Cancer (Cancer.net) After treatment, your friend will be trying to find their "new normal" in this next phase of life. Friendships are an important part of that. Helpful tips on how best to be helpful (and what not to do). Includes excellent gift ideas.
• How to Provide Food Safely for People With Cancer (Nirav Shah, Cancer.net) One item: clean out their fridge for them. See
---3 Steps to a Clean and Safe Fridge for People With Cancer (Kristina Beaugh, USDA, Cancer.net) A general rule for refrigerator storage is 3–4 days for cooked foods, 1–2 days for poultry and ground meat, and up to 5 days for whole cuts of meat. For storage information on more than 400 foods and beverages, download the USDA’s FoodKeeper mobile app. It’s free and it’s available for Apple and Android products.
• Why Is She Acting So Weird?: A Guide to Cultivating Closeness When a Friend Is in Crisis a book by Jenn McRobbie. "During a crisis, it takes a village. And sometimes that village could use instructions."
• How To Support A Loved One Through Cancer (Jordan E. Rosenfeld, Rewire Me, 2-8-16)
• The Step-by-Step Guide to Raising Money for Medical Expenses (Ethan Austin, GiveForward, 3-22-10).
• 19 ways to help someone with cancer (MD Anderson Center) Visit. Listen. Pray. Tell a joke. Send a Facebook message or call on the phone. Help with the laundry or cleaning. Maintain some normalcy. Give them a roll of quarters for the hospital vending machines, or give them a bag of their favorite snacks. Help them fundraise. Give their caregivers a break. Help take their minds off cancer, even if just for a little bit. Etc.
• Supporting a Friend Who Has Cancer (Cancer.net, includes suggestions for gifts)
• A Tribute to Arshi (Ranu Uniyal, Pulse)
• When a Coworker Has Cancer: What To Say, What Not To Say (Cancer and Careers, which also offers "How to Be an Effective Point Person" )
• How to Help a Friend with Cancer (Give Forward blog)
• When Your Boss Has Cancer (Cancer and Careers)
• 12 Tips for Supporting a Loved One With Cancer (Lynne Eldridge, About.com, 2-8-12)
• Helping a dying friend (Dying, Surviving, and Aging with Grace)
• Comforting Words for Terminally Ill Friends and Loved Ones (But I Don't Know What to Say..., Fran Johns, BeliefNet, author of Dying Unafraid