Terrorized By The ‘War On Cancer’

November 27, 2009 · Filed Under general · 40 Comments

How a Three-Word Mantra Has Undermined America’s Ability To Make Sound Healthcare Decisions

with apologies to Zbigniew Brzezinski

In his original article about the war on terror Brzezinski argues that the use of the term War on Terror was intended to generate a culture of fear deliberately because it “obscures reason, intensifies emotions and makes it easier for demagogic politicians to mobilize the public on behalf of the policies they want to pursue”.

Following the release of new breast cancer screening recommendations we have just experienced an historical case of “moral panic” producing a never ending volley of denialism, distortions and abuse of expert clinical recommendations. I believe that the genesis of this abuse dates back to 1971 and that Brzezinsky’s article is a must read for anyone interested in understanding how the culture of fear helps to destroy rational discourse about healthcare reform.

A Militaristic Outlook

It has been 38 years since Richard Nixon signed the National Cancer Act and he and Senator Ted Kennedy declared the “war on cancer”. From that moment a whole set of military/religious metaphors have been used to speak of cancer and of the treatments available and even to explain mindsets of patients. These metaphors have become deeply ingrained in the national psyche. Unfortunately, “in war, truth is the first casualty,” and, as we have seen in the last 2 weeks this is particularly true when politics, emotions and science are added as a deadly mix to create an irrational discourse.

Tags: breast cancer, Breast Cancer Screening, Brzezinski, Clinical Recommendations, Culture Of Fear, Distortions, First Casualty, Healthcare Decisions, Healthcare Reform, Metaphors, Mindsets, Moral Panic, National Cancer Act, National Psyche, Rational Discourse, Richard Nixon, Screening Recommendations, Senator Ted Kennedy, Ted Kennedy, War On Terror, Zbigniew Brzezinski

From incurable to “We can now call you cured”: Cheryl Greene’s story

November 11, 2009 · Filed Under Why PM, e-patient stories, positive patterns · 7 Comments

Here’s another true e-patient story from one of our team.

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD. And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

Tags: ama, Board Member, breast cancer, Breast Cancer Awareness, Breast Cancer Awareness Month, Breast Cancers, Cancer Awareness Month, Drgreene, Executive Producer, Gynecologist, Heck, Hese, Infertility, Inflammatory Breast Cancer, Long Time Friend, Milestone, Paperwork, Patient Story, Physician Web, Pioneer Physician, Recurrence, Remission, Tom Ferguson, True Story, Trying To Have A Baby

e-Patient Training Topic: National Article Reports Relative Risk, Not Raw Data.

August 14, 2009 · Filed Under e-pts resources, general, news & gossip, policy issues, understanding statistics · 6 Comments

Important update: it turns out the writer did get it right, and this was an editing error at the Boston Globe. See my comment August 17.

—–

As empowered, engaged patients we have a responsibility to evaluate the articles we read. A case in point is this week’s Associated Press article Any Spread Of Breast Cancer Raises Risk Of Return. It’s about a paper in this week’s New England Journal of Medicine that found a 50% increase in the chance of cancer recurring, and quotes an expert as saying

“I think it will influence treatment. If we’re considering treating the patient, we probably should.”

Can you spot the flaw in that reasoning, if all you have is that number? That’s all the article reported, and that’s a problem.

Tags: Absolute Numbers, Actual Size, Associated Press, Boston Globe, breast cancer, Case In Point, Coronary Event, England Journal Of Medicine, Health Provider, Health Statistics, Journal Of Medicine, Lipitor, New England Journal, new england journal of medicine, Policy Decisions, Press Article, Raw Data, Relative Risk Reduction, Risk Number, Us Population, Zillion Dollars

Stress: the New Normal for Cancer Patients?

May 2, 2009 · Filed Under e-patient stories · 7 Comments

Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay:

I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the same breast. She originally had a lumpectomy and radiation, and it seemed to be over. With a mastectomy looming in the near future, and reconstructive plastic surgery, she said she could handle it, when I asked her. She was okay.

Welcome to the new normal.
Read more

Tags: 11 Years, ACOR, breast cancer, Breast Cancer Survivor, Cancer Advocacy, Cancer Patients, Cancer Survivors, Chemo, Daycare, Deborah Bell, Life In The Usa, Lumpectomy, Major Illness, Mastectomy, Recurrence, Recurrences, Respite, State Of Affairs, stress, Stressor, Stressors, Way Of Life

Immediate data requested. Please share with breast cancer patients everywhere.

April 30, 2009 · Filed Under e-pts resources, trends & principles · 11 Comments

Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical professionals.

A key sentence in Chapter 5 is “One of the great benefits of patient-initiated research is its speed.” It’s spoken by Norman Scherzer, who was mentioned in our April 3 post A wonderful story of participatory medicine, and describes how when the medical industry falls short, e-patients can step in and gather vitally important data.

Here is another live example:
Read more

Tags: breast cancer, Breast Cancer Patients, Cancer Community, Community Knowledge, Cross Post, Guest Author, Herceptin, Insufficient Evidence, Journal Of Clinical Oncology, Judy Feder, Key Sentence, Medical Data, Medical Industry, Medical Researchers, Online Survey, Patient Community, Patient Power, Research Time, Routine Management, Scherzer, Time After Time, Wonderful Story

In the Spin III: The Smart Resident

January 13, 2009 · Filed Under e-patient stories, hc's problem list · 12 Comments

My quest for a second qualified opinion on an abnormal mammogram (microcalcifications) began in October, Breast Cancer Awareness Month. Two days before the end of the year, a sharp surgical resident put an end to the spin. The solution was simple – and not high tech. She got on the phone and spoke to the various physicians involved. She was proactive where the system was flawed or obviously broken. Most important, she listened to me, the patient. Read more

Tags: breast cancer, e-patient stories, email, hc disparities, listening

In the Spin II: You and Your Billing Code

December 23, 2008 · Filed Under e-patient stories, hc's problem list, policy issues, reforming hc, understanding statistics · 8 Comments

Pass the Valium!

Previously on e-Patients.net I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times health columnist Jane E. Brody, a breast cancer survivor. The gynecologist who ordered the mammogram refused to authorize a second opinion, deferring to the radiologist, who referred me back to the clinic and so on and so forth.

My primary care provider carefully reviewed the films and reports (sans compensation). She thought a biopsy might be the safe thing. She was not the referring entity, however. The clinic was!#$^%$#@

I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity. In a futile attempt to waste no one’s time except my own, I hand-carried a disc of the imaging studies to the appointment.

Right?

Wrong!
Read more

Tags: breast cancer, e-patient stories, hc disparities

A project of the