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Cancer blogs and stories of personal encounters with cancer

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.

• 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)

• 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)

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

Writing My Way Through Cancer Treatment: How an Amorous Novel Saved My Sanity (Hawley Roddick, Talking Writing, 2-7-11)

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Facts about cancer

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 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.

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

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.

Grand Rounds at Dartmouth-Hitchcock Medical Center (talks and slide shows available free online)

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."

MD Anderson Cancer Center. Excellent site for cancer information, publications, and news

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

NCI Cancer Bulletin (news about cancer research)

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

Phoenix 5 (extremely useful website written by men with prostate cancer and the women in their lives)

Prepared Patient Forum (Center for Advancing Health site on how to find and use safe, decent health care)

The Price of Beauty: Some Hidden Choices in Breast Reconstruction (Natasha Singer, NYTimes 12-23-08)

Regrets After Prostate Surgery (Tara Parker-Pope, New York Times 8-27-08)

Quitting Smoking, Guide to (American Cancer Society)

State Cancer Profiles

Tips for living and coping (American Brain Tumor Association)

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)

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).

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A READING LIST OF INFORMATIVE BOOKS ABOUT CANCER AND SERIOUS ILLNESS
(memoirs of coping with cancer below)
• The American Cancer Society Complete Guide to Complementary & Alternative Cancer Therapies (spells out the evidence, or not, of hundreds of therapies' effectiveness and side effects)
• The 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)
• 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)
• 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)
• 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
• 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
• 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

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MEMOIRS ABOUT 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)
• 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
• 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.
• 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 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)
• 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)
• 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
• 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)
• 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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TheBreastCareSite.com. Full of information and you can use search function to find more.

Cancer caps and hats (Tender Loving Care, American Cancer Society,for covering baldness from chemo):
• YearRound Hats and Turbans
• Tips on How to Wear a Hat
• Tips on Choosing and Wearing a Wig (plus links to other practical articles)

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.

Corporate Angels Network (free transportation to treatment facilities -- on otherwise empty seats on corporate aircraft)

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: Reduce your cancer risk a/​k/​a Recipe Corner (recipes from the test kitchen of the American Institute of Cancer Research, which publishes this wonderful cookbook (one of my favorites): The New American Plate Cookbook: Recipes for a Healthy Weight and a Healthy Life. Check out also:
• 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

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 Unspoken Diagnosis: Old Age (Paula Span, The New Old Age, NY Times 12-29-11)

Talking to Doctors About a Terminal Diagnosis (Judith Johnson, Huffington Post). And read the comments.

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.

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 "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.
• 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 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."

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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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