Coping with cancer and critical illness

• Cancer blogs and personal stories about cancer
• General information and approaches to treatment
• Chemotherapy
• Immunotherapy
• Researching cancer (where to look)
• Specific cancers (and see below)
• Books about cancer
• Memoirs about struggling with cancer
• Food that fights cancer
• Other approaches to preventing cancer
• Tools for coping

• 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)
• Checking out clinical trials
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, brain cancer, and aneurysms (no, they are not all cancers)
Breast cancer
Colon and colorectal 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
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.

Cancer blogs and stories of personal encounters with cancer

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."
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)
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)
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)
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
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 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."
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)

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

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.
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)
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)

21st Century Snake Oil. "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
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.
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.
Writing My Way Through Cancer Treatment: How an Amorous Novel Saved My Sanity (Hawley Roddick, Talking Writing, 2-7-11)
Young Survival Coalition (YSC)

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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)
Chemotherapy Drugs and Drugs Often Used During Chemotherapy (Chemocare)
Chemotherapy Acronyms (Chemocare)
MyOncoFertility.org (patient education resource on preserving fertility, from the OncoConsortium)
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)
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)
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.
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."
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). Frug 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
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."
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
Drug dictionary (National Cancer Institute)
Drug information (Medline Plus)
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."

MORE TO COME --just developed this as a separate section.
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Immunotherapy


A shift away from chemotherapy toward targeting the host system, allowing the immune system to rally the troops, so to speak.
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)
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
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.




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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)
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 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)
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.
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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.

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).
Cancer statistics (Steve Dunn's site). See also The Median Isn't the Message (Stephen Jay Gould)
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."
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General information and approaches to care and treatment


National Cancer Institute (NCI) at the National Institutes of Health. Start here.
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.
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.

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)
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)
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.
**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).

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).
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
Cancer & Sugar - Strategy for Selective Starvation of Cancer (Mark Sircus, GreenMedInfo.com, 2-27-13)

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)

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)
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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.
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.
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)
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)
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Types of cancer, sites listing and describing


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)
The full list of ACOR communities (links to support groups for an amazing number of cancer types)
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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)
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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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.
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)
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."
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)
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)
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)
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
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
A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm) by Steve Fishman.
Tips for living and coping (American Brain Tumor Association)
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• Back to Information about specific cancers

Breast cancer


Breast cancer (National Cancer Institute)
What is breast cancer? (breastcancer.org)
Breast cancer signs & symptoms (Web MD)
Stages of breast cancer (breastcancer.org)
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)
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)

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 asStoriesand 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.
Just What's Inside Those Breasts? (Terry Gross interviews Florence Williams about plastic, implants, how readily breasts absorb toxins such as dioxin, and other bad news, some of it affecting children).

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.
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.
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."

*** 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.

Study Reveals How Some Breast Cancers Become Resistant to Targeted Drugs

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.

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."

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.

Breast Cancer Treatment and D.C.I.S.: Answers to Questions About New Findings (Gina Kolata, Health, NY Times, 8-20-15)
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).
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.

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.

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."
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

What We Might Learn from the Early-Stage Breast Cancer Disclosures of Sandra Lee and Rita Wilson (Elaine Schattner, Forbes, 5-12-15)

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.

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.

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.

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.
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.
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." 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).
• 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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Colon and colorectal cancer


Colon and Colorectal Cancer (general information about, National Cancer Institute)
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.

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.
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.
You Could Skip Your Colonoscopy If You’re Willing To Collect Your Poop (Katherine Hobson, FiveThirtyEight, 8-2-16) Two at-home screening tests (in particular, the fecal immunochemical test, or FIT_ appear to be as effective as the more traditional, and more invasive, sigmoidoscopy and colonoscopy.
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 Control Program (CRCCP) (CDC)
Colon Cancer Alliance Inform. Prevent. Support
For Colon Cancer Screening, Cologuard Test Offers A Solid New Option (Elaine Schattner, Forbes, 3-6-15)
For Reasons Unknown, Colon And Rectal Cancer Rates Are Rising In People Under 50 (Elaine Schattner, Forbes, 11-6-24)
'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)
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."

~ Joel Siegel, after ten years of fighting colon cancer

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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.

Kidney cancer


About Kidney Cancer (Kidney Cancer Association)
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."
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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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)
LLS Blood Cancer discussion boards ("talk" with other patients and survivors online)
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.
The Science of PD-1 and Immunotherapy (Dana Farber Cancer Institute
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."
Follicular Lymphoma: (Usually) Slow to Grow, Responsive to Treatment—But Difficult to Cure (infographic, Lymphoma Resource Center, Medpage Today, 3-31-16)
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)
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).
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
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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Lung cancer


Lung cancer is NOT written about in the magazines and other venues that carry heavy cigarette advertising, so you may not have seen these articles.
What You Need To Know About Lung Cancer (free download from National Cancer Institute, NIH)
Is Lung Cancer Screening Right for Me? (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 (Agency for Healthcare Research and Quality)
Types of Lung Cancer (Lung Cancer Alliance)
Lung Cancer Alliance Saving lives, advancing research, empowering people.
Lung Cancer 101 (Lung Cancer.org)
Lung disease lookup (American Lung Association). Lung diseases include asthma, COPD, influenza, lung cancer, pneumonia, tuberculosis
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)
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.
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."
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.
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."'
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."
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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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)
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."
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...."
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

Lawn, amusing but thought-provoking public service ad. You check your lawn for bad spots; why not your skin?
What’s the Difference Between Melanoma and Skin Cancer? (Dana Farber, 5-14-14)
Melanoma: Five Things 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
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
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 81% at 1 Year With MK-3475 in Melanoma (Nick Mulcahy, Medscape Specialty, 11-21-13)
Fantastic 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."
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Mesothelioma

(cancer of the lining of the lungs or abdomen, caused by exposure to asbestos)

Asbestos Disease Awareness Organization (ADAO) "Hear Asbestos. Think Prevention." Blogs, videos, action alerts.
Mesothelioma Information Resource Group (excellent illustrations, hard-to-read type!)
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 (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 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.
Mesothelioma Community Network provides support for asbestos cancer patients and caregivers
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.
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

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....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." This is a powerful, thought 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)

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.
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.”

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.
Ovarian Cancer (cancer of the ovaries, MedicineNet.com)
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.
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)
News and feature stories about ovarian cancer (WebMD)
Ovarian cancer (Medicine.net)
Pap Test May Detect More Than Just Cervical Cancer (1-11-13) Pap tests, which are routinely used to detect cervical cancer, may be capable of spotting ovarian and uterine cancers as well, according to a new paper published in Science Translational Medicine. Study co-author Luis Diaz, of Johns Hopkins, discusses the findings.
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

• 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

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)
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Pancreatic cancer


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)
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
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.
Prostate cancer (National Cancer Institute) Gateway to many useful links about prostate cancer.
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.
Prostate Cancer Foundation. See Understanding prostate cancer
Prostate Cancer Diagnosis and Staging (Medscape)
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.
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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Skin cancers


Types of carcinoma (Cancer-Symptoms.com)
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.
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
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.
Survival 81% at 1 Year With MK-3475 in Melanoma (Nick Mulcahy, Medscape Specialty, 11-21-13)
Fantastic 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 has ocular melanoma, for which about 50 percent of cases metastasize.
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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.
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.
The Sarcoma Alliance
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."
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)
• 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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Thyroid cancer

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.
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)

http:/​/​www.nytimes.com/​ref/​health/​healthguide/​esn-thyroid-cancer-ess.html (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
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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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 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."
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)
• 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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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.


NCCN Guidelines for Patents. For unfamiliar terms, see the NCCN glossary.

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)

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BOOKS ABOUT CANCER AND SERIOUS ILLNESS
(including memoirs of coping with cancer below)

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.
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 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
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
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MEMOIRS ABOUT STRUGGLING WITH CANCER

• 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)
• 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
• 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
• 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
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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
Anticancer: A New Way of Life by David Servan-Schreiber
Beating Cancer with Nutrition by Patrick Quillian (book with CD)
Foods that fight cancer (foods to include in your diet, American Institute of Cancer Research)
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 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)
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
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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.
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."


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Tools for coping

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)
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.
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CancerCare (counseling, financial and insurance information and education for caregivers). Click here or call 1-800-813-4673)





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

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)

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Cancer support groups


How Can I Find a Breast Cancer Support Group in My Area?
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 storyWhat 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.
Association for Cancer Online Resources (ACOR) , with links to online patient discussion groups. Browse the incredible general list of ACOR online communities.
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)
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.
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.
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.
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)
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.
Macmillan Cancer Support (a UK-based community support group, for sharing feelings about cancer experience)
Men Against Breast Cancer ("supporting the women we love")
MyOncoFertility.org (links to support groups and cancer sites such as Fertile Hope (LiveStrong Fertility)
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)
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)
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)
Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman and Idelle Davidson

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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
Ronald McDonald House Helping families stay close to their child through a network of local chapters
The Rose Every woman deserves quality breast care (including mammograms and bone density testing)
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"
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The cost of cancer care
and finding 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.
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
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.
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)
CancerCare Counseling. Support Groups. Education. Financial Assistance.
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.
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)
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.
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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)
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Travel support

Angel Airlines for Cancer Patients
Air Charity Network
Corporate Angel Network (CAN). Cancer patients fly free in empty seats on corporate jets.
Road to Recovery. Providing rides to cancer patients. 24/​7 Lifeline 800.227.2345 (live chat).
Travel Assistance (American Brain Tumor Association links to several sources of transportation help)
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Comforting a person with cancer


What a Friend Can Do (Cancer and Careers)
How to Help a Friend with Cancer (Kelly Corrigan, Women's Health, 9-14-12)
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).
Supporting a Friend Who Has Cancer (Cancer.net, includes suggestions for gifts)
Why is She Acting So Weird?: A Guide to Cultivating Closeness When a Friend is in Crisis by Jenn McRobbie. "During a crisis, it takes a village. And sometimes that village could use instructions."
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

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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”?

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 cellsAwakening 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
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)
Cancer Clinical Trials, Q&A (NCI)
Coalition of Cancer Cooperative Groups
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).
ClinicalTrials.gov (search for studies in this registry and results database of publicly and privately supported clinical studies of human participants conducted around the world)
NCI's National Clinical Trials Network

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)

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.

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."
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Cancer research, education, and advocacy organizations

(including foundations that support research)
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)
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)
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.
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
Sarcoma Foundation of America (finding the cure in our time)
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 Cancer provides education and resources on cancer survivorship to survivors, caregivers, and healthcare professionals4
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Understanding the debate 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/​.
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."

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"

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