Cancer once meant a death sentence. Increasingly, as medical scientists find new ways to combat it, it is becoming a chronic disease. Prevention is the best approach to fighting cancer, but when it 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.
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.
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
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.
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.
NIH Research. CRISP replaced by
NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs.
News updates here.
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A READING LIST ABOUT CANCER
(tell me which helpful titles are missing!)
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)
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)
Cancer: 50 Essential Things to Do by Greg Anderson
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.
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!)
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)
Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope
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
Prostate and Cancer: A Family Guide To Diagnosis, Treatment and Survival, by Sheldon Marks
The Red Devil: To Hell With Cancer - And Back by Katherine Russell Rich (long-term survivor of stage 4 breast cancer)
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, , by Cappy Capossela and Sheila Warnock
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
Your Brain after Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Daniel Silverman and Idelle Davidson
MEMOIRS OF STRUGGLING WITH CANCER
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)
Engelberg, Miriam.
Cancer Made Me a Shallower Person: A Memoir in Comics
Grealy, Lucy.
Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)
Handler, Evan.
Time on Fire: My Comedy of Terrors (recounting with grim humor his battle with leukemia 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)
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 (explores her breast cancer and mastectomy)
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)
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)
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
Understanding the debate on health care reform and health policy
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/
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 "didnt 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.
C-Span's Health Care Hub is a good place to find various town hall discussions, hearings, wonderful links. C-Span, you're wonderful!
The Cost Conundrum: What a Texas town can teach us about health care (Atul Gawande, The New Yorker, 6-1-09)
A consumer guide to handling disputes with your employer or private health plan, 2005 update, Kaiser Family Foundation
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)
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 policyriddled with holes and exceptionsthat the health care reform bills in Congress should try to do away with. The maternity coverage we purchased didnt 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; its 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, theres no one looking out for us at all."
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, 7-26-09on 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 cant 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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