Why the fear of cancer undermines the new mammography guidelines

Fear is such a powerful emotion, humans will do almost anything to relieve it. The most effective way to control fear is to manage whatever it is we’re afraid of. Night lights against the monsters under the bed; locks on the doors and a handgun under the pillow to fend off intruders; annual mammograms and PSAs to keep us from dying of cancer. Although all these things may relieve fear subjectively, they may have little or no objective efficacy against the source of our fears. Fear of death — especially a painful, lingering, degrading one — is a primal human fear.

This is why cancer is so terrifying, and why any news about scientists’ and doctors’ successes in diagnosing and treating it (ie, controlling it) is held in such high regard. Anything we can do to reduce our chances of dying from cancer or getting it in the first place is a powerful balm to this deepest of fears. though the subtleties of science can make it difficult for non-scientists to grasp some of the nuances. One of the earlier discoveries about cancer is that it generally responds better to treatment sooner in its natural history rather than later. From this has flowed the logical assumption that “early detection saves lives.”

What fantastic news! All you need to do to not die of cancer is have it detected early enough! As a practical matter, this has been the message heard by patients through the years as they troop through my office for mammograms, pap smears, PSAs, rectal exams, colonoscopy referrals, and complete skin checks. Unfortunately, this reassuring scenario is seriously flawed.

First, there is no effective screening for some cancers (leukemia, lymphoma, pancreatic, liver, primary brain tumors; the list is long). Second, some tumors are rapidly growing, springing up between regularly scheduled screenings. Third, even some cancers detected “early” will fail to respond to treatment. Finally and most importantly, the screening process itself is not harmless. Mammograms involve radiation. Frequent skin exams often involve numerous biopsies, which can bleed, scar, or become infected. Colonoscopy comes with its own myriad of complications including perforation, infection, bleeding, and anesthesia-related problems like aspiration. PSA’s and pap smears can detect lesions that were destined to regress spontaneously, meaning that all subsequent treatment risks come with no real benefits at all. And yet when someone is diagnosed with cancer the first thing everyone does is try to figure out “why?”

Lung cancer? Must have smoked. (Not always.) Breast cancer? Must not have gotten mammograms. Manifestly false, given the number of rapidly growing tumors diagnosed between screenings. Prostate cancer? Didn’t want to bend over and take it like a man, a sentiment as grossly unjust as it is inaccurate.

This is why the introduction of the new USPTF mammography recommendations to change from 40 to 50 the age for beginning asymptomatic screening in average-risk women is so threatening. These new guidelines are a nuanced expression of the complexities of screening, and a slap in the face to the safe, secure — and wrong — perception of mammography as a talisman against breast cancer. The dangers of screening are real, and go far beyond “a little anxiety,” as the guidelines’ detractors point out with such derision. Unnecessary surgery — biopsies of abnormalities found on premature mammographies — is a big deal, far beyond the financial costs everyone seems so eager to add up.

Yet the fear of cancer is so great, and the (false) promise of “peace of mind” from mammography and other screenings is so powerful, that not only do we continue to seek this comfort even when it’s shown not to be true, but we vilify those who dare to threaten our fragile safety net against the terror of cancer. Although this response is understandable, it is still a shame.

Lucy Hornstein is a family physician who blogs at Musings of a Dinosaur, and is the author of Declarations of a Dinosaur: 10 Laws I’ve Learned as a Family Doctor.

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  • Diora

    So true.

  • Beverly Trainer

    Excellent article!

    Could you possibly recommend a like-minded physician in the Scripps network in La Jolla?

    Thanks.

  • Diana

    Dr Hornstein and Dr Sherman are starting to restore my faith in doctors. I’m so over the pressure to screen for an ever-increasing list of cancers and only being told one half of the story – the “happy” half.
    I don’t want screening at all.
    I have yet to be convinced of the need for any screening test. If I’m not high risk for a cancer or if the cancer is rare or uncommon and if the test itself can lead to serious and harmful procedures – I don’t want it!
    I’m so tired of doctors trying to bully and pressure me into screening. We should never reward doctors for screening as many patients as possible.
    No doctor has the right to tell you half the story and to dismiss your right to choose, especially one with a conflict of interest.
    I heard recently that they might wheel out screening for ovarian cancer. It’s been considered before and there is no effective screening tool available. To subject women to even more investigation for an uncommon cancer for no real benefit, with a guarantee of high risk and harm to many women through unnecessary and harmful surgery and other treatments, is totally unacceptable.
    Of course, we never hear the risks until much later, if at all…just a blanket assurance the screening is simple, pain and risk free and for a common threat. Yeah, sure – I’ve heard that one before! There is also a prevailing air that women are irresponsible if they choose not exercise their right not to screen. Screening has become a law for women.
    Screening is becoming a contest; who can harm the most patients and keep them grateful and in complete ignorance? We really need to look closely at the motives behind the advice to screen and to do our own research before agreeeing to any test, no matter how “simple, risk and pain free” they say it is…..
    If they have money to spend, put it into research for better treatments for prostate and breast cancer, two major killers.
    Great article.
    Couldn’t agree more…

  • A Skeptic

    Lucy, you need to go to work for the USPSTF. All they needed to do was to frame this issue like you did, and the public would have understood the basis behind the recommendations. Their inability to do so allowed the health care reform luddites to put forth their straw man arguments and scare the lay public to death. It makes me wish I paid more attention in English class.

  • Don

    Strange place for the administration to make its first stand in the “restor(ing) of science to its rightful place” campaign.

    What I had in mind in this “restoring science” effort was the discovery or invention of a way to make mamographies safer to enable continuation of the previous screening guidance. I didn’t count on “restoring science” to mean … ‘we crunched the numbers and don’t see enough value to accept the risk for the population’. That’s not science.

    My sister was not high risk … and her breast cancer was caught soon enough following a mamography when she was 44 that a double mastectomy and chemo treatment has beaten her cancer. Wonder how many other American women have had similar experience and like my sister been able to obtain a mamography screening and treatment before they were 50? My sister wouldn’t have made it that long.

    Let’s focus on improving the capabilities of the diagnostic tools instead of limiting their use as a way to lower the risk profile… or save money as many could legitimately claim was the primary objective of the USPSTF initiative.

    You can argue otherwise… but my sister and I wouln’t buy it.

  • http://www.iMedicalApps.com iltifat

    Three VERY key points you mentioned in your post:

    1) One of the earlier discoveries about cancer is that it generally responds better to treatment sooner in its natural history rather than later. From this has flowed the logical assumption that “early detection saves lives.”…Unfortunately, this reassuring scenario is seriously flawed.
    2) Third, even some cancers detected “early” will fail to respond to treatment. Finally and most importantly, the screening process itself is not harmless.
    3) PSA’s and pap smears can detect lesions that were destined to regress spontaneously, meaning that all subsequent treatment risks come with no real benefits at all

    I can’t emphasize enough how key those points are. The USPTF didn’t do a good job of conveying these points in the succinct manner that you did. They were not aware of the political implications their screening guidelines would have. One of the task force members told me they are “a bit politically naive”, but at the same time made the comment “wouldn’t you want the people doing these reviews to be politically naive?” (they are not politically affiliated, contrary to what the media has made it seem)

    The problem is that we as a society do not have a populations based approach to medicine. We give anecdotal evidence to make our points. Yes, women in their 30s have breast cancer, and it’s terribly unfortunate, but just because we can name examples doesn’t mean we should be screening women in their 30s. There are serious harms to screening, as the author so eloquently explained, and these harms are felt from a populations level, not necessarily an immediate individual level.

    In order to have a more populations based approach to medicine we need to actually believe systematic reviews from legitimate unbiased organizations. Until then, we will continue running medicine by anecdotal evidence, and focusing on individuals, and not whats best for the population’s health as a whole. We need a good mix of both, not either or.

    One of my friends who is a colorectal surgeon practicing in Canada said it the best with the following quote:

    “American health care advocacy groups tend to have this idea that more aggressive care is better care. In Canada and the UK, annual screening mammography begins at 50 and has done so for many, many years. There has been no epidemiological data showing that this has resulted in an increasing number of deaths from breast cancer. Interventions and tests are not benign. You cannot deny evidence. Politicians can, but not policy makers”

  • Diana

    You’ll always find a case here and there where someone is saved or thinks they were saved by screening. The fact remains, when there are high risks and clear evidence of harm, women (and men) need to be warned in the clearest terms, not bullied into screening having heard only one side of the story.
    My concern about screening groups who face very high risks is that often informed consent is lacking with screening and patients face high pressure to screen. Often risks are hidden or played down, so people have no idea of the true position.
    At least changed guidelines may alert people to the risks. If you really want a mammogram (after hearing the risks) I’m sure you could still get one. A friend managed to get her Dr to refer her for one at age 37 after Kylie Minogue was diagnosed. She ended up having biopsies (benign) and was put off….I think she’ll consider screening again when she turns 50.

  • AnnR

    It would be nice if restoring science resulted in finer tools for working with breast cancer and things that aren’t quite breast cancer but might be breast cancer! The dollars all seem to go towards treatments that prolong life by a year or two, but don’t stave off the ultimate end.

    I have no doubt that for many women there are screening and preventive services that are far more productive than mammography. Say controlling blood pressure/lipids and working on body mass. A woman is irrational to breath a sigh of relief about her health if she’s hauling around excess pounds with other bad indicators just because she had a clear mammogram.

    But for women whose lives are touched in some way by breast cancer they are all too aware that if you don’t get it early you will die, most likely within 5 years, from it.

  • Doc99

    When faced with a choice between apples and oranges, don’t be surprised when many choose apples.

  • Bella

    Dr. Hornstein,

    Thank you for this excellent article. Your rational perspective has been sorely lacking from the media’s coverage of the new mammogram recommendations. I’ve been alarmed at how many reporters have painted the Task Force’s objectives as monetary, when their real concern was the high risk of physical and emotional harm to women with routine mammography between the ages of 40 and 49. I’ve also been alarmed by how few reporters have looked at mammogram recommendations around the developed world, in countries with better health statistics than the U.S. They are more in line with these new recommendations.

    Please continue to spread the word.

  • Diora

    Don – you miss one important issue with your personal story: just because a mammogram found your sister’s cancer doesn’t mean mammogram saved her life.

    - it could’ve been overdiagnosis. Yes, the fact that she had to have chemo and had mastectomy makes it unlikely, but not impossible, not with some DCIS’ being quite extensive to require a mastectomy
    - the cancer could’ve still been curable even if detected later
    - it could still come back

    Even if in your sister’s case, mammogram did save her life, for every woman like her there are 10 women who get unnecessary diagnosis of breast cancer and unnecessary treatment and many more women who get false postives and biopsies.
    This is the problem with personal stories. Nobody knows how individual cancer would’ve behaved if remained undetected. Yet every single survivor and their relative would’ve loved to believe that it’s their life that was saved. It’s much more comfortable to believe that then to believe theirs could’ve been the case of overdiagnosis.

    @Doc99 – you keep making cryptic remarks without giving any information or arguments

  • patient x

    The argument against routine mamograms for younger women loses steam when proponents of that point of view state that “evidence shows that SOME won’t benefit”. Did those young women with no history or clinical signs, whose breast cancer was caught early and lives saved or extended, take a foolish risk with early screening? What would the doctor who might have advised against the exam say to these women now?

  • anne marie

    OK, so there’s only anecdotal evidence that early screening saves lives, but also no emperical evidence that early screening won’t save lives. Nobody wins this argument unless the point is how much money would be saved.

  • Bella

    Anne Marie,

    Respectfully, I think you are missing the point that many women are harmed by the test.

    Many people think everyone should get any and all screening tests, because we are “better safe than sorry”. But as H. Gilbert Welch points out in “Should I Be Tested for Cancer”, it’s not clear which course will make you safe and which will make you sorry.

    Mammograms have risks (unnecessary biopsies, anxiety, overdiagnosis, exposure to radiation, etc.) as well as benefits. The task force said women under 50 should individually weigh those risks and benefits, with their doctors, instead of undergoing routine tested. That recommendation had nothing to do with money.

    Most countries in the developed world (places with much better health statistics than the U.S.) don’t routinely screen women under 50, because the evidence shows it is not a good idea. We are finally catching up. This is progress.

  • BD

    Bella & Ann Marie:

    >>I think you are missing the point that many women are harmed by the test.>>

    Absolutely. Furthermore, consider women like myself who elected to follow the “new” guidelines years ago (this isn’t new information – check out “Overtreated” by Shannon Brownlee). I’ve had a physician try scare, then pressure tactics, then threaten to drop me from the practice. I changed physicians instead.

  • jsmith

    It is simply unrealistic to expect most of our patients to know Bayesian Statistics. Number needed to treat, absolute risk, sensitivity, specificity –most doctors, let alone patients, have a weak grasp of these ideas. Add the notions of harm from screening and the complexities of the natural histories of various types of cancer, and distrust of the medical profession, and it all becomes too much.
    Not only that, but the people with the small brains (the press and the politicians) have big megaphones, and the people with the big brains (epidemiologists) have small megaphones. A recipe for a dust up.
    The good news: eventually doctors will find a way to communicate this information on mammography to their patients. Give it 5 years or so.

  • BD

    >>It is simply unrealistic to expect most of our patients to know Bayesian Statistics. Number needed to treat, absolute risk, sensitivity, specificity –most doctors, let alone patients, have a weak grasp of these ideas.>>

    As one who works with statistics – yes, I’d agree. Most doctors I’ve met have a very poor grasp of these concepts indeed. I mentioned in an earlier discussion that sitting through a basic epidemiology course with a group of doctors-to-be is frequently excruciating. Doctors generally aren’t stupid people, but few grasp how epidemiology might be germane to practice and even fewer are actually interested in statistics. Most just want to pass the epidemiology class and move on to clinics ASAP.

    I think the old adage holds true: half of the material one learns in medical school is completely useless. The problem is it’s hard to determine which half.

  • Diora

    t is simply unrealistic to expect most of our patients to know Bayesian Statistics. Number needed to treat, absolute risk, sensitivity, specificity –most doctors, let alone patients, have a weak grasp of these ideas. Add the notions of harm from screening and the complexities of the natural histories of various types of cancer, ….

    As a software engineer who does NOT work with statistics, I don’t see why you think it is so complicated or why one needs to know Bayesian statistics to understand these basic concepts.One doesn’t need to understand Bayes’ theorem or the inference process to understand what number needed to treat means or the difference between absolute risk and relative risk. All one really needs to understand is numbers and percentages – secondary or even elementary school math. Some 5th graders on a popular TV show could probably figure it out. OK, (very) basic probability to the level of 1st chapter of any probability theory text book would be nice simply to understand the concept of probability, but even that is a bit of an overkill.

    I don’t see how understanding “if one screens 1800 women for 10 years, 1 death from cancer will be prevented” requires knowledge of statistics. Absolute risk reduction is even simpler – just say “your current risk of dying from this condition in 10 years is n%. This will reduce your risk from n% to m%” rather than giving actual number.

    Really, if doctors cannot understand such elementary concepts, I am getting scared…

    As to harms of screening – H Gilbert Welch explains it very well. I think the doctors who don’t know how to explain it should read his book.

    I do agree with your points about the media and politicians.

  • Who has a choice?

    All of this is academic.
    My doctor won’t refill my script for BCPs unless I have a yearly mammogram and of course, yearly pap smears, pelvic, rectal and breast exams.
    The reduced recommendations are not worth a thing if doctors can still make their own demands and punish us if we refuse by denying us reliable birth control.
    We must have screening and exams that may be of unproven value, of no or little value, have risks, are harmful and for which we’re supposed to give informed consent. We must, if we want birth control. There is no consent and certainly no informed consent.
    I can go over the recommendations and make informed decisions, then my Dr will deny me birth control. I’ve called around and all doctors seem to have these “requirements”.
    If I refuse, we have to manage with condoms and risk an unplanned pregnancy.
    They are the options faced by women who rely on doctors to get birth control.
    Everyone knows it happens and no one does a thing to stop it.
    It’s unethical and amounts to an abuse of my rights and jeopardizes my psychological and physical health.
    These exams and test have nothing to do with birth control and have been made a pre-requisite for Pills to take away my right to choose or decline preventative tests and exams.
    I read on another forum that this conduct amounts to coercion. It surprises me that so many doctors and people are not the slightest bit concerned about this situation that carries on while these debates rage….
    It would be nice to have a choice and say in all of this….

  • Diora

    My doctor won’t refill my script for BCPs unless I have a yearly mammogram and of course, yearly pap smears, pelvic, rectal and breast exams.
    FYI – I read one lady’s comment elsewhere where she said that after her doctor denied her BCP without these exams, she went to Community Legal services, they wrote a letter to the doctor, the doctor gave her BCP prescription the next day.

    I am not a lawyer, but I’d imagine that unless the doctors can demonstrate how the screening is medically necessary for birth control, they are violating a bunch of laws. Blackmail is illegal. Informed consent is a right. The right to refuse a test, any test, is a right. I’d imagine that if you were to stop by community legal before your next visit to a doctor and ask them for a letter that explains to the doctor your legal rights, you might get a BCP. The women should really fight for our legal rights. It is totally outrageous that doctors feel they are above the law.

  • anne marie

    Doria said:
    “I’d imagine that if you were to stop by community legal before your next visit to a doctor and ask them for a letter that explains to the doctor your legal rights, you might get a BCP. The women should really fight for our legal rights.”

    Not many patients would have the guts to threaten their doctor into compliance with a letter from a legal service. It’s a brave patient who would then continue treatment after that doctor has just been “put in his place”. The only other option a patient has in this situation is to change doctors, but that isn’t easy with a lot of insurance plans.

  • R Watkins

    Diora and Who Has a Choice:

    Some, if not many, of the docs you criticize may have been participating (against their will) in some of those horrorific pay-for-performance programs, in which, if she doesn’t treat every patient exactly the same, she loses a significant part of her income.

  • Who has a choice?

    Thanks for your advice.
    I’ve always felt the “requirements” for BC were not about health. Now that recommendations have been reduced, it shook me up to find my doctor and many others “would not be making any changes to their requirements”. How can they do that when the recommendations say these schedules are too much and/or too early and harmful?

    R Watkins – that makes me angry. How can women be used in this way? Is it just women? I suppose we’re easy targets because we need doctors for BC. Clearly, they don’t have a shred of concern about our rights. The system obviously makes them confident that we don’t matter, they are protected.
    How do we change this system and restore our rights? (if we ever had any as patients)
    I feel better “knowing” what’s going on and plan to stop being a co-operative body with no voice. It would be difficult to change doctors. I plan to write to the insurance company, though I doubt they’ll care about my letter.
    If nothing else, it will make me feel better, like I’ve done something and fought back even in a small way.
    It might even be time to stop BC and start using condoms or have a talk to my husband about a vasectomy. This is all too much to take…

  • Diora

    Who has a choice – this info about community legal was actually from some discussion I saw on some blog where one woman mentioned that this was what she did and that it worked for her. Another woman mentioned that she simply collected a bunch of information from the web: about low probability of benefit for cervical screening, how rare the cancer is and also about high rate of false positives and overdiagnosis; brought her to her doctor and got her prescription. It has to be from medical journals or guidelines website e.g. USPSTF rationale, not from lay people websites. Just keep the papers as backup to show as needed, but start by just summarizing what you know in a couple of sentences to save office time.

    You just really need to be persistent but polite. Show that you know what you are talking about and also that you know your rights. Mention that you understand that screening has benefits, but you are also aware that it has risks, and that you feel that for you benefits don’t outeweight the risk. Your doctor is the one violating your rights…. Of course, you should always be polite and respectful.

  • Who has a choice?

    Thank you, Diora…great ideas.
    My husband has an appointment with a urologist in the new year…the problem might be solved for me but I feel bad for all the other women who feel trapped and used by this system. Needing BC shouldn’t make us a vulnerable group that can be exploited with immunity. We all have rights and all screening and preventative medicine should be my choice. Using my need for BC to sweep aside my rights is immoral, unethical and if it’s not illegal, it should be…