Terrorized By The ‘War On Cancer’

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.

People become “victims” of cancer. The moment they are diagnosed they are told to “keep fighting this thing” and when a treatment fails doctors can say “we are going to change the nature of the fight and the nature of the battle.” In online communities people daily talk about “battling the beast”.  The metaphor of battle has also been used remarkably well to sell the simple, linear idea that cancer screening is always preventative. In military style, you discover early the enemy and “take it all out as quickly as possible”, take chemotherapy to “wipe out the cancerous cells”. In addition, advocacy organizations have in their mission to “eradicate cancer”. Just last year, the American Cancer Society’s National Cancer Legislation Advisory Committee (NCLAC) issued “Conquering Cancer: A National Battle Plan to Eradicate Cancer in Our Lifetime.” Sounds exactly like the terminology of the Bush administration when it was talking about the “war on terror” and how it would eradicate the enemy.

A Risk Averse Society

The contemporary society, suffused by TV news that bathe the entire country in a constant state of fear, violence, terrorism, alien invasion, shrinking opportunities, financial collapse and unsafe future in general has become incredibly risk-averse. It certainly looks like everything is done to raise certain fears and to limit others.

In health care the risk aversion is even higher. The real risks of malpractice litigation have transformed the practice of medicine and introduced an element of defensive medicine in the entire continuum of care.  Health communication, profoundly transformed by the introduction of DTC, talks about side effects and risks of medications. Important studies done over the last 20 years have defined many system dysfunctions and shown that these dysfunctions can cause many unnecessary deaths. TV reporters have developed the habit of reporting medical news with an advocacy slant instead of reporting and explaining new scientific discoveries.

A Culture of Fear

People have always been terrified by cancer. Until recently many would refer to it as “the big C”. The advent of the Internet online communities changed that and archives of the oldest groups have many references to friends, co-workers and family members still talking about the big C. With the advent of screening tools, professional & advocacy organizations took on the mantra that screening was clearly efficacious and reduced the risk of dying from cancer. Media were used to promote this simple linear message. How could anyone not react positively to “I’m alive because mammography discovered my cancer early” or to “it is proven that early screening saves lives”?

The screening procedures started generating very significant income for many professional people and advocacy organizations started receiving consistent monetary support from the manufacturers of screening equipment. Just think that the latest recommendations show that over 19,000 mammograms are necessary to save a single life. How does that number translate in $? With an average cost of $500/mammogram, it will cost up to an aggregate $9,500,000 to radiologists for every 1900 women who follow the new recommendations. Don’t you think this may be an incentive by all the professional societies of radiologists and breast imaging specialists to come out swinging against the new recommendations? Is it any surprise that Dr W. Phil Evans, president of the Society of Breast Imaging said in a statement ”the USPSTF recommendations are a step backward and represent a significant harm to women’s health?”

As Gary Schwitzer Adriane Fugh-Berman and Alicia Bell said:

...When critics with conflicts of interest are banned from the argument, the controversy vanishes.”

To produce a climate of fear you need the following elements:
  • Careful selection and omission of news (some relevant facts are shown and some are not);
  • Distortion of statistics or numbers;
  • Corruption and distortion of words or terminology according to specific goals;
  • Oversimplification of complex and multifaceted situations;

As we have seen across the media, this is a prime example of a coordinated campaign of fear!

Lies, Damn Lies and Statistics

Americans are great users of statistics, as demonstrated by their deep knowledge of batting, fielding and pitching stats. They also use statistics to limit risk, a fundamental activity in  risk-averse health care system where perceived mistakes can easily cost a fortune. With the new emphasis on comparative effectiveness, data collection and statistical analysis should also help us build a better healthcare system where decisions will be based on evidence-based medicine.

Unfortunately, politicians have become grand masters in the use of statistics as a tool to generate instant emotional reactions from the people. The last 6 months have demonstrated how these politicians can manipulate numbers in order to achieve a high level of fear among their target audience. The least educated the target audience, the higher the impact of the manipulation using statistical data. And so the debate about tools and methodologies necessary to advance the science of evidence-based medicine devolved into the infamous “death panels speeches” instead of explaining the scientific basis of success stories from well-know integrated healthcare systems such as Intermountain or Kaiser Permanente.

The issue is of course the general lack of statistical literacy, as we wrote in the e-patients blog here and there. As described therein

Statistical literacy is a necessary precondition for an educated citizenship in a technological democracy. Understanding risks and asking critical questions can also shape the emotional climate in a society so that hopes and anxieties are no longer as easily manipulated from outside and citizens can develop a better-informed and more relaxed attitude toward their health.

Fran Visco, President of the National Breast Cancer Coalition (NBCC), testified last month, “there are too many unfortunate examples of policies, messaging and beliefs that have taken hold while there was, in fact, no real evidence to support them and the misuse of statistics by opponents of healthcare reform.

More is always better

There is a deeply entrenched belief in the public that more medical care means better medical care. Once again news reports often tout the latest medical tests and often refer to them as breakthroughs, while the published data is based upon preliminary accounts of studies. The pharmaceutical industry provides its own world of often misleading advertising and has been shown to help produce biased studies that become part of the new standard of care. The discussion about healthcare reform has shown that the incentives for doctors to provide more care are pervasive. Most doctors are paid more only when we do more; and all fear malpractice, where errors of omission pose a greater risk than errors of commission. Imaging centers depend upon a continued flow of patients. The profits of device manufacturers depend upon continued sales. And the result of all this? A poll published in USA Today last week showed that

  • 76% disagree with the new recommendations,
  • 76% believe the panel made their recommendations based on cost,
  • 40% believe the chance of developing breast cancer between age 40 and 50 between 20% and 50% (the real number is 1.4%).

Older studies have shown that women are aware of false positives and seem to view them as an acceptable consequence of screening mammography. In contrast, most women are unaware that screening can detect cancers that may never progress but feel that such information would be relevant in helping them male a choice. As Elliot Fisher wrote in the NY Times in 2003 in “More Medicine Is Not Better Medicine”:

Patients should receive accurate and balanced information on the benefits and risks of the medical choices they face. They also need much better information about the organizations where they receive care? not only about quality, safety and costs but also about incentives. How are doctors paid? How are hospital and health plan executives rewarded? What are their relationships to drug and device manufacturers?

That certainly fits squarely into our vision of participatory medicine, where the patient is no longer seen first as a source of income but as an equal partner in the entire continuum of care.

*  The phrase “moral panic” has been used to describe a widespread, irrational scare brought about by a lack of scientific or general education among the public, intrinsic human biases in the assessment of risk, a lack of rational thinking, misinformation, and giving too much weight to rumor.

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43 Responses to “Terrorized By The ‘War On Cancer’”

  1. Terrorized By The 'War On Cancer': How a Three-Word Mantra Undermined Our Ability To Make Sound Healthcare Decisions http://bit.ly/7sTtFn

  2. Marilyn Mann says:

    “As Gary Schwitzer said: ‘..When critics with conflicts of interest are banned from the argument, the controversy vanishes.’”

    The original source for this quote was a post by Adriane Fugh-Berman and Alicia Bell on the Bioethics Forum:

    http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4194

  3. Marilyn,

    Sorry for the error! (Fixed)

    I loved the BioEthics Forum original post. It speaks much louder than most spokespersons for the Komen Foundation or the ACS.

    Do you know if the Komen Foundation is receiving funding from the device manufacturers or the various professional organizations you’ve mentioned? Their very strong support for mammography anytime and at any cost, their communication methods and the very strong connection to the Republican party have always made me question a lot of what they say.

  4. ePatientDave says:

    Composing massive comment on @GFry's post on how "war on cancer" has made us insane about mammography http://is.gd/5520k

  5. John Sharp says:

    RT @ePatientDave: Composing massive comment on @GFry's post on how "war on cancer" has made us insane about mammography http://is.gd/5520k

  6. KentBottles says:

    RT @JohnSharp: RT @ePatientDave: comment on @GFry's post on how "war on cancer" has made us insane about mammography http://is.gd/5520k

  7. pnschmidt says:

    First off, don’t mistake the “tragedy of the commons” for a failure to understand statistics: people quite often understand that it makes no economic sense to provide some benefit to everyone, but they typically respond to that by saying, I’d better collect my benefit before the economics of the situation blow up. There’s a reason that every nation that has controlled healthcare costs has done it by rationing care.

    Second, we as a nation are getting dumber and dumber with respect to science, and specifically with respect to math. I know a health statistician associated with a famous group who didn’t know how a stastical package she was using defined an outlier. We need more and better statisticians, but we can’t realistically expect the public to read and assess the math. We need to construct accessible narratives around those statistics, establish credible systems of peer review, and steer the public to the journals in which information that clearly and credibly lays out the data appears.

    Science is derived from the latin word for wisdom, and implies understanding. Faith is defined as belief in a higher authority. Until we can address the public’s woeful inadequacy to understand research, we need to approach it as a challenge to manage faith. This turns it from the unmanagable challenge of training the public to separate fact from fiction to one of lobbying “thought leaders” to adopt the right stance. Unfotunately, as with any lobbying, truth is a powerful but not decisive ally.

  8. Gilles, we can always count on you to cut to the heart of the issue, the deep-down issues. Thanks for this.

    This is going to be a rambling reflection on the many thoughts this discussion evokes.

    First, what does this have to do with being an e-patient? Everything. It’s increasingly clear that we can’t rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. We must learn to interpret evidence for ourselves.

    Second, let me say that I have not read the USPSTF’s specific recommendations. The instant I heard the public reaction I knew there was craziness in the air. I heard insanity: reactions to things that weren’t being said; hysteria. And I knew what I’d write about wouldn’t be a yes or a no, but how to approach such a consideration as an informed, engaged e-patient.

    The purpose of using statistics

    Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read last November’s short post on understanding statistics. And consider reading the excellent paper it links to.

    Look at its incredible evidence that even physicians misinterpret statistics – the example on the second page is specifically about gynecologists being unable to correctly interpret mammography data, unless it’s presented quite clearly. The point isn’t that docs are dumb, it’s that misinterpreted statistics lead to confused, botched conclusions.

    See, the purpose of statistics is to improve our guesses when we don’t have certainty. Use the tool correctly and it’ll help; use it wrong and it’ll drive you right off the road into a ditch.

    Another example in that article is Rudy Giuliani’s ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK – data collected under different circumstances in different environments at different times in life. The reality is that prostate mortality is the same in the two countries, but Giuliani’s bogus logic led him to declare that the US healthcare system works better than the UK’s.

    Right: same mortality rate, but pick some arbitrary statistic and claim that it shows there’s a difference, even when the actual mortality rate is the same. Brilliant civic leadership.

    REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. Actual outcomes outweigh interim statistics!

    (Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)

    STOP BEING IGNORANT. Don’t use a tool if you don’t know what it’s for!

    In my annual physical today, Dr. Danny Sands and I again discussed whether I should get a PSA test (prostate cancer test). He first brought it up three years ago, and he (unlike many physicians) made clear that the PSA is notoriously unreliable: many false negatives, and many false positives that lead to unnecessary treatment. That’s the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.

    Every choice in life has risks.
    You cannot evaluate doing something without also evaluating not doing it, and comparing.

    See, “not screening” carries risks, as does screening itself.

    Many articles have discussed that screening tests (a) cost money, (b) can lead to unnecessary treatment because of false positives, which (c) cost more money and (d) can cause harm.

    It’s exactly the same as the UK birth control issue. The erroneous public reaction was caused by evaluating one arm of the choice and not comparing it with the other. Result: greater risk of clotting: a botched conclusion with medical consequences. You could call it statistical malpractice.

    Just SHUT UP if you want to tell me “Don’t take away my tests!!” I didn’t say that. Don’t be insane, hearing things I didn’t say. That’s hysteria.

    I’m not talking about the conclusion, I’m talking about how to make intelligent choices.

    Who gets hurt? The patient.

    In a comment on Gary Schwitzer’s excellent blog, I said what really upsets me in the mammography insanity is that (ironically!) it’s women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.

    In a similar way, the first case in that paper is about a 1995 UK scare caused by news that new birth control pills were causing a 100% increase in blood clots. True – but the reality was that they produce 2 clots per thousand women, vs. 1 for the old pills. Literally a one-in-a-thousand difference. But oh wow, that’s 100%! Headlines!

    Here’s the consequence: Because of ignorant misinterpretation, massive numbers of women went off the pill, and in the following year …

    • 13,000 more abortions were done in England and Wales
    • 13,000 more births, including 800 under age 16

    The special irony is that both abortion and pregnancy have higher rates of clotting than the pill itself. So the whole ignorant diversion was not only ill-considered, it worsened women’s health (while increasing abortions and births).

    Doesn’t it irk you that the righteous protests about protecting women’s health, ignorantly considered, lead to bad advice?? These errors in interpreting science harm people.

    The idiocy of asking celebrities their opinions

    Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.

    A new blog, the oddly named Celebrity Diagnosis, has chosen the mission of talking about health issues through the lens of celebrity discussions. They cite how dumb celebrities have been on this topic, particularly Jaclyn Smith saying “They want to abandon proven therapies. It’s wrong.”

    Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that’s over your head. So shut the hell up on medical advice, willya?

    But that’s what Gilles is talking about when he cites moral panic, which the Center for Media Literacy defines as “A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts.”

    And what better way to drive people to panic than fear of death?

    But hold on; I’ve been there. Let’s think.

    On the fear of cancer and death

    When I learned on 1/22/07 that my median survival time was 24 weeks, it was NOT pleasant for me. “No. I am not done. Not ready to go.”

    But after the abrupt shock, I found myself able to look it in the eye and think. What are my choices? Where do I start?

    Twenty years ago I listened to tapes titled “Conscious Aging” and “Approaching Death” by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote Be Here Now. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I’ve seen him speak, and believe me, when he entered the large hall, some sort of presence filled the room. Never seen anything like it.)

    He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn’t interested in going through that door, but after a while I realized that if that’s what was happening, I could face it.

    And that freed me to have authentic conversations with people about it, and with myself: I was able to choose my path with a clear mind.

    I don’t diminish the concerns of people who face cancer and/or death – everyone’s trip is different. But throughout my cancer journal on CaringBridge.org I talked about the power of the words and concepts we use in discussing our world. I opted not to engage in discussion of “OMG!” and “How terrible!” I chose to think about “What are my options? What could be done that would make any difference?”

    If we could all face death calmly I bet we’d be able to make much better choices in how we interpret evidence.

    Think.

    That’s why hysteria (Wikipedia: “unmanageable fear or emotional excess”) is so very, very harmful. When people lose their minds, perhaps because they’re told foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?

    Oh wait: we don’t have to ask the odds. This time we know.

    Well done, Gilles. Obviously you touched a nerve.

  9. Marilyn Mann says:

    Gilles

    Even though I am a breast cancer survivor, I don’t know much about the various breast cancer patient advocacy groups, including Komen. You might ask Emily DeVoto.

    Marilyn

  10. pnschmidt says:

    This is a very interesting discussion. I think that we need to make sure we frame the dabate properly, in that what “you” (the e-patient) should do and what “we” (society) should do are quite different. “You” should learn to understand statistics, but it is unrealiatic to assume that “we” will.

    Much of medicine is not Gaussian (I.e., a bell curve). Your course on probability and statistics likely did not cover the distributions we see in medicine. “You” should understand how these issues affect you, “we” will not.

  11. pnschmidt,

    the USPSTF recommendations are made for society by a group of primary care clinicians, with a recognized expertise in prevention, evidence-based medicine, and primary care. That’s exactly whom I would expect to get this kind of advice from.

    As the AHRQ site states: The recommendations of the USPSTF are made for asymptomatic populations; the recommendations made by the Task Force are not disease—or individual—specific.

    Furthermore, the USPSTF site says exactly:

    "So, what does this mean if you are a woman in your 40s? You should talk to your doctor and make an informed decision about whether a mammography is right for you based on your family history, general health, and personal values."

    Diana Petitti, MD, MPH

    Vice Chair, U.S. Preventive Services Task Force
    November 19, 2009

    We, as individuals, have a responsibility to learn about statistics so that we can understand the rationale of these recommendations or of any recommendation made by a physician, since physicians are now the clinical experts on which we rely to limit our choices only to the clinically significant ones. Of course our final choices have to include more than a pure clinical or statistical recommendation and that is EXACTLY what the USPSTF panel wrote: “The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.”

  12. JB says:

    Interesting article. I’ve been studying statistics recently and thoroughly enjoyed your site. Especially the quote with regards to living in a technological democracy. I will ask the questions to my physicians about statistics.

    One minor update, Intermountain Healthcare shouldn’t have a capital M in the name.

    I’ve enjoyed reading so far and look forward to more great articles.

    JB

  13. Amy Romano says:

    Thanks for the great article and really insightful comments. I particularly like Dave’s point made here and on Gary Schwitzer’s blog that women are disproportionately affected by warped policy based on misuse of statistics.

    There is actually a small body of literature on military thinking in obstetrics, summed up nicely in a Boston Globe editorial a couple of years ago. (See also this oldie but goodie.) Cheney’s 1% doctrine is alive and well in maternity care, collateral damage be damned, and a climate of fear pervades childbirth choices – both what’s on the “menu” and what women ultimately choose.

  14. Wow Amy!

    Great comment. I’ll certainly remember the maximin strategy. It is true I didn’t think about the rest of medicine since I was writing specifically about mammograms and the quasi-religious belief they automatically save lives.

    Do you think the problem of the maximin strategy applies to a significant portion of medicine in America? Could it explain a significant portion of the estimated $800 Billion spend annually on treatments that are either unnecessary or without clear clinical benefits?

    Thanks for the conversation!

  15. For those who haven’t clicked through on the “oldie but goodie” that Amy mentioned, here’s the start of that abstract:

    ====

    The maximin strategy in modern obstetrics.

    Brody H, Thompson JR.

    Many currently accepted obstetrical practices exemplify a maximin strategy: making the best of the worst possible outcome, regardless of the actual probability of that outcome occurring. But a survey of recent obstetrical research fails to document superior clinical results when this strategy is employed in routine obstetrical care. …

    ======

    This was *1981* !

    It’s easy to see why Gilles wonders if this applies to the rest of American healthcare. Is it the root cause of defensive medicine?

  16. Barbara Thomas, MD says:

    The original breast cancer screening method was a manual examination of the breasts and armpits. It was no-cost or low-cost, easy, and pretty reliable. Most importantly, it’s radiation-free … many people seem to have forgotten that the radiation dose received during imaging studies also has risks.

  17. Amy Romano says:

    I do think the maximin strategy is in much wider use than just OB. It extends beyond health care, even. I saw an ad in a magazine a while back for an SUV that said it was “built for the one percent”. (Gag…I actually wrote an article about what SUVs and the conventional OB management model have in common!) I also think maximin is linked to fear of lawsuits, because lawsuits happen when the worst case scenario unfolds, so our use of tests and procedures reflects a desire to avoid that possibility, even if that same approach introduces new (“manageable”) risks, wastes resources, or eclipses preventive care or more holistic approaches to treatment.

    One thing that is different in OB and to some extent other areas of women’s health is that the military metaphor gets applied in such a way that the “enemy” is the woman’s body, rather than some external invader like a virus or a mutation like cancer. You might be shocked to know how frequently perfectly healthy pregnant women are told that they are “ticking time bombs,” even (or especially) by health care providers (the fear is the tiny but real possibility of a spontaneous stillbirth). A big part of the approach to prenatal care is finding and managing “maternal-fetal conflict”, and modern labor management pretty much boils down to rescuing the baby from the mother before her body has a chance to kill or injure it. My greatest hope for maternity care reform is that we will start treating childbearing women and fetuses/newborns as interdependent rather than always in real or potential conflict.

    The (normally functioning) body becomes the enemy in other areas of women’s health, too, including prophylactic mastectomy and treatment of sexual dysfunction.

    Anyway, sorry for steering the thread away from mammography! It’s just that OB is my beat, and the military metaphors are overflowing in my little corner of health care. :)

  18. Amy,

    I’ll ping Alan Greene to respond to your last comment.

    We did fire any doctor that would talk to my wife in this manner, and it included female docs.

    We, as engaged patients/caregivers (the e-patients) should have a zero tolerance policy when it comes to communication skills of health professionals. All the great doctors I have met are able to reliably communicate transparently with their patients, at the personal level of comfort & engagement of each patient. (see @hjluks repeated posts about that aspect of medicine.

    What you describe about the vision of a conflict between a mother and her fetus reminds me once again that what is most necessary in the reform of the US healthcare system is bringing back the personal element into medicine. That is my biggest fear with the current focus on EHRs. They do have the clear potential to remove the personal element even further.

    I can testify that the French are, in general, happy with their medical system and with the quality of care they usually receive, because they see mostly a primary care physician who knows them well, for an extended period of time and who is the closest thing I know to an additional family member. Surprisingly (not!) most of these PCPs do not have ANY kind of EHR, they have no fears of being sued and they rarely will push for maximin results.

  19. Barbara, THANKS for your comment above reminding us that mammography itself carries the inherent risk of the radiation used for the test.

    You say manual exams were “pretty reliable.” I’d hope that somewhere along the way, some completely convincing study showed that mammography saves X number of lives. Anybody out there have that info?

    [Note, all, I AM NOT ADVOCATING ANY POSITION. I just asked a frickin question about evidence.:–)]

  20. Lee Smith says:

    I question the conclusions of groups like USPSTF. There is a whole series of events intervening between screening, biopsy, detection of possible cancer, sometimes early stage, decision making in collaboration with physicians, possible treatment, outcome. Missteps in any one of the stages can lead to an undesirable outcome EVEN IF screening provides a key starting point with useful, important information (which many of the experienced experts believe ). So why are the statisticians wrong? Because they ignore the path. For example, a report has just come out , showing that the majority of prostatetectomies in this country are performed by surgeons with quite limited experience resulting in a substantial reduction in effectiveness and increase in negative side effects. But wait you say, what does that have to do with PSA screening. Simple — many of the men getting inferior treatment had their initial diagnosis via psa screening. So a study by USPSTF which just looked at PSA and at final outcome would “conclude” that the PSA screening didn’t work, when what really didn’t work was a further step the surgery because of the limited abilities of the surgeons. USPSTF needs to look at these sorts of factors before coming up with much in the way of useful conclusions in my opinion, or else all they should conclude is that you don’t have good followup available don’t get mammograms and PSA tests. More importantly — we need advice on how to get qualified practitioners, not on avoiding obtaining potentially useful knowledge about whether or not we have early stage cancer. From the report:

    http://www.medscape.com/viewarticle/713012?sssdmh=dm1.560691&src=nldne&uac=121910CN
November 25, 2009 — The majority of surgeons performing radical prostatectomy in the United States have extremely low annual caseloads, which can result in an increased risk for surgical complications and cancer recurrence, according to a new analysis published in the December issue of the Journal of Urology.

  21. Lee, have you read the USPSTF recommendation on mammography? (I mean the original words, not the coverage of it in news stories and blogs.)

  22. Com’on, Dave :-)

    You say “some completely convincing study showed that mammography saves X number of lives”. That is EXACTLY the issue. There are conflicting studies and the studies in use have conflicted methodologies with both sides attacking the way data was collected and analyzed. For an understanding to “SOME” of the historical elements, read the mammography controversy, an article from Colin Begg in 2002. A summary: “The appropriateness of screening mammography has emerged once again as a contentious issue. This report brings readers up-to-date with the latest developments in this long-running controversy.”

    + ca change + c’est la meme chose!

  23. ePatientDave says:

    @StaticNrg A vigorous & good exchange this weekend: @GFry "Terrorized by the 'War on Cancer'" http://is.gd/57jK4

  24. Lee Smith says:

    I’ve read some of it. What in particular are you referring to. what is more important to me is the publicity it’s getting. This is one in a series of critiques of screening and I admit to being “biased” against the USPSTF approach based on their long standing negativity about PSA testing. So my comments are not focused on specifics but on a general approach. What does USPSTF say about the cascade of events and pathways involved on their studies and about the role of less than adequate practitioners in confounding their data. Have they taken a best practices role of looking at the best centers and seeing what they come up with.

  25. SusannahFox says:

    Post-holiday must-catch-up-on: @gfry incited debate with his post, Terrorized By The 'War On Cancer' http://bit.ly/7sTtFn

  26. Lee,

    you are giving the USPSTF a role it doesn’t have! Have you ever looked at their mandate? Here it is:

    The Task Force makes its recommendations on the basis of explicit criteria. Recommendations issued by the USPSTF are intended for use in the primary care setting.

    Their job is not to look at best centers but to come up with recommendations for the entire population, based on the reality on the ground and the best scientific evidence available at the time of their “evolving” recommendations.

  27. Lee Smith says:

    So what’s a person to do. What you are telling me is all the more reason to continue to get screened and go to a good center (or at least get a second opinion) before reaching decisions. I suspect that the reality on the ground is that mammograms and PSA tests will help, but only with proper follow up — that seems to be the experience of so many folks I know that i can’t discount them all as anecdotes — and USPSTF should say so, not that the value of screening is unproven, but that screening will work best with good follow up. Unfortunately many will be discouraged from screening, insurance standards may change to exclude those unable to get good car.

  28. Lee Smith says:

    So I think the USPSTF is guilty of distributing dangerous information. So what’s a person to do. What you are telling me is all the more reason to continue to get screened and go to a good center (or at least get a second opinion) before reaching decisions. I suspect that the reality on the ground is that mammograms and PSA tests will help, but only with proper follow up — that seems to be the experience of so many folks I know that i can’t discount them all as anecdotes — and USPSTF should say so, not that the value of screening is unproven, but that screening will work best with good follow up. Unfortunately many will be discouraged from screening, insurance standards may change to exclude those unable to get good car.

  29. Robert says:

    You made a fantastic point in this article: more health care is not necessarily better than good health care. You can see all the doctors you want, but if you are misdiagnosed, it doesn’t mean a thing.

  30. RT @SusannahFox: Post-holiday must-catch-up-on: @gfry incited debate with his post, Terrorized By The 'War On Cancer' http://bit.ly/7sTtFn

  31. Lauren says:

    As Nietzsche said: “There are no facts, only interpretations.” This is especially true when facts are inconvenient to the goal at hand.

  32. [...] the compact hybrid…The ACOG hospital model is neither sustainable nor affordable.” In a thoughtful post about military terminology and philosophy in healthcare at e-Patients.net, again conversation turned to the American enhusiasm for [...]

  33. [...] 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 [...]

  34. WOW! Terrorized By The ‘War On Cancer’ http://bit.ly/7sTtFn & 'I don't need a war to fight my cancer' http://bit.ly/92jUT5

  35. Josh Joseph says:

    Gilles,

    This is a terrific piece. Realize I’m coming late to this discussion and see comments here responding to many of your themes. Would like to also follow up on your good observations about the “war-on-cancer” metaphor and its impact, which deserve another nod.

    “War” is a potent metaphor, as you note. Its use in framing the dialogue around cancer has had some positive effects (helping draw attention to the issue and probably making it more accessible), but clearly some negative ones (feeding new fears, narrowing discussion and limiting perceived options).

    I think it’s mind blowing how a simple metaphor can have so much sway in directing our thoughts and actions. If you’re interested, there’s a wonderful paper (though maybe a bit academic) by Don Schon, which covers this topic beautifully. It can be found at: http://bit.ly/5X2G0u in the book Metaphor and Thought. When you get to the landing page for the book, just click the “contents” tab and then the chapter “A perspective on problem setting,” which starts on p. 137.

    An example of the power of metaphor that has stuck with me begins on p. 144. Will summarize it here for folks that may not have time to read it. Schon describes how, several decades ago, the metaphor “urban blight” was used to characterize inner city “slum” areas and to support the need to eliminate and redesign them from the ground up…from homes to schools to parks and shopping and community centers. As Schon notes, “In this way it was hoped that the cycle of decay could be controlled and the birth of future slums prevented.” The metaphor of “Blight” fit this story well – blight is a plant disease that easily infects other plants if not fully eradicated. It suggests that slums, like blight, needed to be eradicated or they would spread. Piecemeal efforts to address the problems wouldn’t do.

    But the blight metaphor also minimizes and draws attention away from another equally valid way to frame the issue. That is, despite their many problems, “slums” are also neighborhoods with vibrant communities. They are a nexus for social ties, support systems and other key benefits that residents rely on. When these communities are pulled apart, as they were when early renewal projects uprooted and moved them to new housing projects in the name of urban redesign, the systems they support are also destroyed and often prove difficult to rebuild.

    In sum, many of the “solutions” that flowed from the logic of the blight metaphor made matters worse…much like the war on cancer analogy. Of course, these problems were discovered too late for many communities. I don’t think we can or should avoid metaphor but need to do what you and others suggest, which is to look for and challenge the limitations they may convey and to realize that these limitations may not be immediately obvious.

  36. Thank You Joseph!

    I’m thrilled you enjoyed the post. Thank you for directing me to this wonderful book.

    There must be something in the air. Just yesterday the Guardian blog posted a parallel and fantastic piece by Mike Marqusee:
    “I don’t need a war to fight my cancer. I need empowering as a patient” Using the martial metaphor for something as complex as cancer makes the disease ripe for political and financial exploitation.

    Here are 2 paragraphs, which I found exceptionally clear:

    Many cancer therapies are blunt instruments. They attack not only cancer cells but everything else in sight. This is one reason people fear cancer: the treatment can be brutal. Making it less brutal would be a huge stride forwards for people with cancer. And that requires not a top-down military strategy, with its win or lose approach, but greater access to information, wider participation in decision-making (across hierarchies and disciplines) and empowerment of the patient.

    Cancer treatment involves extensive interaction with institutions (hospitals, clinics, social services, the NHS itself). Even in the best hospitals, the loss of freedom and dependence on anonymous forces can be oppressive. Many cancer patients find themselves involved in a long and taxing struggle for autonomy – a rarely acknowledged reality of the war on cancer, in which the generals call the shots from afar.

    As an aside I would be thrilled to discuss with you and your fantastic organization, both as an individual and as a founder of the Society for Participatory Medicine, the possibility to develop programs to raise the public awareness about the great benefits (necessity?) of becoming informed e-patients.

  37. Josh Joseph says:

    These are great examples. Thanks also for your kind words. Can’t say I was speaking for my org in posting here, but would welcome the chance to talk with you to learn more. Am new to this site (connection through S. Fox). Have read the e-patients white paper, which is really something and followed some excellent threads. Don’t think I have your email but will follow up on Twitter. Cheers – JJ

  38. tom rich says:

    About prostate cancer,It is important to remember that your doctor does not necessarily think you have cancer if he or she suggests a screening test. Screening tests are given when you have no cancer symptoms. Screening tests may be repeated on a regular basis.

  39. @ePatientDave These # help understand the daunting task for scientists. Term "war against cancer" ever more ridiculous http://bit.ly/7sTtFn

  40. RT @gfry: @ePatientDave These # help understand the daunting task for scientists. Term "war against cancer" ever more ridiculous http://bit.ly/7sTtFn

  41. [...] people face cancer and the threat of death differently. Two years ago SPM co-founder Gilles Frydman expressed his concerns about the term “war on cancer.” Linnea’s post acknowledges that many people have [...]

  42. [...] November 2009 here, Gilles posted Terrorized By The ‘War On Cancer’, an incisive analysis of the harm it does when we speak in such terms. (That’s why I put [...]

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