Breast cancer’s latest saga: misfearing and misplaced goalposts



What’s the number one killer of women? It’s a question that practitioners asked every new patient at a clinic where physician Lisa Rosenbaum once worked, and she hasn’t forgotten the answer given to her by one middle-aged woman with high blood pressure and elevated blood lipids. “I know the right answer is heart disease,” the patient told Rosenbaum, “But I’m still going to say ‘breast cancer.’”

Rosenbaum recounts this experience in a perspective published yesterday in the New England Journal of Medicine, which follows on the heels of a long-term study published online Tuesday in BMJ that found no benefit from screening mammography. The two papers make fine companions.

The Rosenbaum commentary explores a phenomenon that Cass Sunstein dubbed “misfearing” — our human nature to fear instinctively, rather than factually. Her patient’s first answer is correct — heart disease kills more women than all cancers combined, and yet breast cancer seems to invoke far more fear among most women. “What is it about being at risk for heart disease that is emotionally dissonant for women?,” Rosenbaum asks. “Might we view heart disease as the consequence of having done something bad, whereas to get breast cancer is to have something bad happen to you?”

I don’t know the answer to this question, but I suspect that Rosenbaum is on to something. Studies show that women — and doctors — grossly overestimate their risk of developing breast cancer and dying from it. One study published in the Journal of the National Cancer Institute found that women in their 40s overestimated, by a factor of 20, their risk of dying from breast cancer over the next decade. I have to think that the media is partly to blame.

Fewer than seven percent of breast cancers are diagnosed in women younger than 40, (the median age at diagnosis is 61), but when the disease strikes younger women, it tends to be more aggressive and less responsive to treatment than it is for older women. Scary stories like those of Susan G Komen, who died of breast cancer at age 36, invoke fear, and for good reason. Komen did not bring her cancer upon herself. Her disease was random, undeserved and very aggressive. And if you flip through the women’s magazines during their October “breast cancer awareness” extravaganzas, most of the stories you’ll read are about beautiful young women like Komen who were diagnosed at a young age. The way to prevent such a fate, most of these stories will tell you, is obvious — screen early and often.

This solution is the only reasonable option if you think of breast cancer as a relentlessly progressive disease that will inevitably kill you if you don’t remove it in time. That story about breast cancer — I call it the “relentless progression” model — has truthiness on its side. It makes common sense and offers a measure of comfort: Every cancer can be cured if you just catch it in time.

There’s just one problem, as I’ve written here numerous times before — research has shown that the relentless progression model is wrong. Despite the one-size-fits-all name, breast cancer is not a single disease, and as the science of tumor biology has advanced, researchers have come to understand that not every breast cancer cell is destined to become one of the life-threatening varieties. It’s only when cancer spreads to other parts of the body — a process called metastasis — that it becomes deadly, and it’s now clear that not every breast cancer is fated to leave the breast. If you detect an indolent cancer early, there’s no life to save.

The Canadian study published this week adds another large mass of evidence to an already rather large pile suggesting that most of what mammography has done is turn healthy people into sick, but grateful cancer survivors. The BMJ study followed nearly 90,000 women over several decades and found that those who received screening mammograms were no less likely to die of breast cancer than the women in the study randomly assigned to skip the tests, but they were prone to getting treated for breast cancers that would have never harmed them. (The problem, of course, is that we can’t yet distinguish the bad ones from the harmless ones, so once a cancer is detected, we must assume it’s the worst kind, least we undertreat it.)

The BMJ study calculated that 22 percent — more than 1 in 5 — breast cancers diagnosed by a screening mammogram represented an overdiagnosis. These were breast cancers that did not need treatment, and the women who received these diagnoses needlessly underwent treatments that could damage their hearts, spur endometrial cancer or cause long-lasting pain and swelling.

The true rate of overdiagnosis is almost certainly higher, because the analysis excluded ductal carcinoma in situ (DCIS), a pre-cancer which accounts for one in every four breast cancers detected via screening. Experts are currently debating whether to remove the word “carcinoma” from this condition, as was done for a precancerous cervical lesion. Studies show that simply mentioning the word cancer leads patients to opt for more aggressive treatment.

It’s time to shift our objectives. The glossy magazine stories and awareness brochures and mammography proponents like the American College of Radiology have set their sights on the wrong goal. The ACR’s criticism of the BMJ study focuses on the number of cancers detected, but that’s the wrong objective. We should be aiming to save lives, not create as many cancer patients as we possibly can.

No one wants to get diagnosed with cancer. You only benefit from a cancer diagnosis if that cancer is destined to kill you and the diagnosis allows you to treat in a way that prevents you from getting sick and dying. And that’s where things get complicated, because treatment for cancer makes most people feel pretty lousy. It disrupts their lives in a major way. Even a relatively early stage breast cancer can cost you your hair, part or even all of your breast or breasts, and months of treatments that make you feel tired and sick. These treatments are totally worth it if it means that you avoid dying from the cancer. But if they’re aimed at curing a cancer that was never going to become deadly, then what early diagnosis has actually done is made a healthy person sick. I think it’s safe to say that no one wants that. Treatments and awareness about breast cancer seem to have created most of the improvements in breast cancer outcomes, and we should celebrate those accomplishments.

Yet despite all the evidence showing that current mammography guidelines are causing more harm than good, I don’t expect them to change without a fierce battle. After the 2009 fight over the U.S. Preventative Services Task Force guidelines, the lines were drawn and most experts took sides. Once that happens, new evidence is unlikely to shift anyone’s opinion. Instead, it will cause those who oppose cutting back on mammography to dig in their heels and seek uncertainty in the data to confirm their prior belief that mammography saves lives. Once people have made up their minds, it’s difficult to open them up again, and a determined mind is prone to confirmation bias. Even when the numbers point to heart disease as the most dangerous killer, it’s hard for facts to overcome conditioned fear.

Mammography proponents like Harvard’s Daniel Kopans are surely right that mammography has saved some lives. But the more important question is whether they’ve helped more women than they’ve harmed, and the evidence is now clearly pointing to no.

Image by Airman Magazine, via Flickr.




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22 thoughts on “Breast cancer’s latest saga: misfearing and misplaced goalposts

  1. The article wisely notes an important phenomenon, that our fears don’t match the facts. It also observes that this ‘misfearing’ is a risk in and of itself. But it is either intellectual elitism or poor reporting to credit this to Cass Sunstein, who writes prolifically in the venues the literati read, but is only describing the innate psychology of risk perception that pioneering researchers like Paul Slovic and Baruch Fischhoff have studied and written about since the 1970’s. Sunstein often re-label things that others have discovered (he calls Kasperosn’s ‘Social Amplification of risk” ‘availability cascades’), and because HE is read, HE gets the credit. Sunstein proselytizes this important knowledge, and advocates it be applied to risk management, as I and others have for years. But citing him as the source of our understanding of ‘misfearing’ is wrong.

  2. Excellent, excellent, excellent (and thoughtful) post. There will be serious critics of the BMJ study, no doubt, especially those who consider routine screening mammography a public-policy dictum (rather than a judicious screening option). Each woman should remember that screening recommendations apply to the population at large, not necessarily to the individual–ie, her. What’s good for the population, and public health by extension, is not necessarily good for the individual. That said, even the BMJ study suggests that routine screening mammography is not such a terrific mandate for all adult women. Given the confusion, I’d say, “Ask your doctor.” But your doctor, at this point, will probably still tell you to undergo regular screening mammography.

  3. It is so gratifying that this information and point of view is starting to come out more and more. At the every least it raises awareness that there is a question and a conversation to be had.

  4. Hi Christie, I have followed your articles concerning mammograms for quite a while. Being a two time cancer survivor, with a type of cancer that I am told is extremely rare. When I was diagnosed in 2000 i was told there were less than 200 cases. I found the lump in my breast with a self examination. I told my oncologist at the time I wanted no more than one mammogram a year. He objected. I said it was my body. When cancer returned in my lung several years ago it was the same type of cancer. The treatments I went through the first time have cost me so much. Teeth fell out and back surgery resulted from all the chemo. I now have bone pain that is with me constantly. That too is caused from the chemo.

    As a cancer survivor I have mixed feeling on mammogram testing. I know so many women who would not have known without a mammogram but they also had never been in touch with their Dr. on a regular basis.

    Personally I feel they need to cut back on all the testings. I have had so many CT Scans,PET scans and xrays I wonder why I don’t glow in the dark.

    Until you are told you have cancer you can only guess what a cancer patient is going through. It is very scary to be told you have the “Big C” and at the moment I was told I knew I would fight for my life. Little did I know the consequences of radiation and chemotherapy. They don’t tell you that fourteen years later you will have all these side-effects. I spoke with a woman yesterday who thirty years after chemo has bone issues showing up.

    What is the answer? I don’t know. I can’t even find information on my type of cancer. Patients are very much left in the dark about a lot of that. All I can say to oncologist out there is be honest with us. Tell us everything to expect. Let us decide if we want to ruin the quality of our lives for years to come. Give us a choice.

    I recently changed oncologist because I felt my former one tested me too much. Always a CT Scan. One every three months. That isn’t the answer.
    Keep up the good work.

  5. How did I miss this site? I’m losing my touch, excellent article and I completely agree with you. Here in Australia the screening program and vested interests are, in my opinion, firmly in control. They’ve done a great job of convincing women having mammogram and lots of pap tests is a no-brainer, just do it! Counting us off like ignorant sheep with no real information provided, just a screening story or patronizing celebrity endorsement.

    There is no doubt in my mind that women’s cancer screening is being protected, not women. There is zero respect for informed consent, even consent itself is violated with cervical screening. (you need one for the Pill, all women must have them etc.)
    Our pap testing program is a great commercial exercise, but a lousy deal for women. We horribly over-screen women, we’ve ignored the evidence from the start and as a result have huge over-treatment/excess biopsy rates. We hear the most and spend a fortune on pap testing, when the lifetime risk of cc is 0.65%, it was always rare, by the way, and in natural decline before testing even began.
    Women have been trained to greatly fear this rare cancer, whereas mouth cancer which occurs at roughly the same rate, is rarely mentioned.
    It misleads women which can have deadly outcomes, a woman lighting up a cigarette may believe her normal pap test has cancer covered, a study I read a few years ago showed many women believe cervical cancer is more common than bowel or lung cancer and no ones talking about heart disease. This is terribly unfair to women and deeply disrespectful, it’s bad medicine.
    I consider our programs to be medical abuse and have declined to take part in them, pap testing was rejected more than 30 years ago and more recently, breast screening.
    I’m not prepared to accept much risk at all to screen for a rare event, now I understand I’m HPV- and cannot benefit from pap tests. Of course, I discovered very quickly that women are expected to screen and judged harshly if we don’t. Women are to be persuaded or forced to screen (medical coercion) “for their own good” yet we’re on our own when we’re harmed by the screening process.
    We don’t see these attitudes in prostate screening or even bowel screening. (far more common cancers) All very respectful when men might be involved.

    I don’t believe either program operates in the interests of women. If you compare our cervical screening program to evidence backed programs found in the Netherlands and Finland, the difference is stark. We’re basically spending millions to worry and harm women. Most women cannot benefit from pap testing, we can easily identify those at risk, but we choose not to. We fill up day procedure with not-at-risk women, we conveniently don’t do HPV testing until after treatment.
    The Dutch will scrap their 7 pap test program, 5 yearly from 30 to 60, and offer instead 5 HPV primary tests or women can self-test with the Delphi Screener (many women find the pap test unacceptable and after menopause it can be very painful) at ages 30,35,40,50 and 60 and ONLY the roughly 5% who are HPV+ will be offered a 5 yearly pap test.
    This will save more lives and take most women out of pap testing and harms way.
    Here women are told to have 26 (or more) pap tests, 2 yearly from 18 (some start earlier) to 70. Our GPs get a target payment for testing, but this is not mentioned to women.
    This provides no additional benefit to women, but sends false positives way up. So we end up “treating” more than 10 times the number of women than a country like Finland. (they’ve had since the early 1960s a 7 pap test program, 5 yearly from 30 to 60 and have the lowest rates of this rare cancer in the world and refer far fewer women for biopsies etc)

    We heard about over-diagnosis for the first time last year when one doctor stepped forward to warn women. I was aware of this risk over 10 years ago thanks to the Nordic Cochrane Institute summary on the risks and actual benefits of mammography. Yet most women here have never heard of the NCI.
    We have the same names here who come out and discredit anything that casts screening in a bad light, it’s so clear they’re protecting the program and self-interest, not women.
    Their aim is to convince women to keep screening, and to cause confusion and fear, “this study might put some women off screening, and some of those women will die needlessly”.
    When you’re informed you see these people for what they are, but so many women are being deceived, manipulated and harmed by the very people they thought they could trust.
    So I can’t see things changing here anytime soon, too much money is being made and most women are compliant, but more negative commentary is appearing where women will see it. At this stage though, there are only a couple of doctors warning women so most will dismiss them as radicals. Screening numbers are falling here so I’m hopeful more women are getting to the evidence. This usually triggers more heavy handed tactics by the screening authorities, another awareness/scare campaign and they also, recently increased the target before GPs can collect their incentive payments for pap testing. (so women may face more pressure in the consult room)

    The AMA, ANZCOG and our medical leaders should have done something to clean up women’s cancer screening, but they’ve, IMO, played along enjoying the profits. I have zero respect for those who treat women in this way.

    Two senior male doctors with the AMA still publicly link the Pill with pap tests when they know the two are unrelated, one even seemed to be endorsing medical coercion, yet I don’t hear these men say men should have a colonoscopy or prostate exam before they can have Viagra. Naturally, they’re terrified the Pill will be taken off script and they’ll lose control/have less power over women.
    So these sorts of attitudes also, contribute to the current toxic screening environment.

    Thank you for your article…it makes me happy to find this sort of site. We get very little critical discussion here on women’s cancer screening, none on cervical screening and only a small amount on breast screening and that only started in 2013. (thankfully, the internet has made it easy for me to get to the evidence)
    Heaven help the women who simply trust the medical profession, they’re being let down badly.

  6. Apart from this new study, there is very strong scientific evidence in disfavor of the use of mammography (see “The Mammogram Myth” by Rolf Hefti).

    If a scrutinizes the research data beyond the pro-mammogram claims of the medical establishment he/she will quickly see that women have been profoundly misled about the real value of mammography.

  7. “Misfearing” misses the point. It’s not that women aren’t aware that their risk of dying from breast cancer is less than their risk of dying from heart disease; it’s that women are more afraid of a breast cancer death than of a heart disease death. All dying is not equal. Heart disease can kill you in your sleep or quickly from a heart attack. Breast cancer may kill you slowly after metastasizing to bone (resulting in pathological fractures), to lungs (resulting in shortness of breath), or to brain (resulting in dementia). Is it any wonder that women are more afraid of breast cancer than of heart disease, regardless of the odds?

  8. To Sandy Bundy – I’m with you on the full disclosure. Even a “simple” fine needle aspiration can cause pain for deades. That pain, of course, causes anxiety, which causes more pain, etc., etc.

    It seems to me that lack of trust/faith in physicians and medical practices has reached the point where they’d better include herbalism…waving magic wands… some kind of respectable ceremony that would, at mininum, be empowering and offer relief.

  9. PS What brought me to the internet, and this website, was a search for – mammogram isn’t the answer- as I started having an actual panic attack because I’m scheduled for a diagnostic mammogram – haven’t had one for 10 years – and for symptoms that I’m sure, on one level, have zilch to do with the symptoms in my post-menopausal breast and everthing to do with throwing hands in the air and giving in to a compliance which can only serve to harm me.

    If I am told one more time that everything medical is “my choice,” I’m going to flip coins instead. I’m going to ask the universe again for enough guts to cancel the blasted test, but you can get pretty worn down. I loathe making decisions out of fear and lousy options. I don’t need to guess that you do as well.

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