An informed screening choice for breast cancer

Most women in their 40′s believe they should have annual mammograms, regardless of what screening regimen their doctor might recommend.

So say researchers in Massachusetts who surveyed women (primarily white, highly educated) ages 39-49 presenting for annual checkups. They gave the women a fact sheet about the new USPSTF guidelines on mammogram screening in their age group, and asked them to read one of two articles either supporting or opposing the guidelines. The researchers then asked women about their beliefs, concerns and attitudes about breast cancer and mammogram screening.

Here’s what they found:

  • Women overwhelmingly want annual mammograms. Close to 90% of women surveyed felt they should have annual mammograms, regardless of what their doctor might recommend.
  • Women overestimate breast cancer risks. Eighty eight percent overestimated their lifetime risk for the disease, with the average estimate being 37%. (The correct lifetime risk for breast cancer is 12%). This is consistent with previous research on breast cancer beliefs.
  • The media may not influence women’s opinions about screening guidelines. No matter which article they read, close to 90% felt that that the (USPSTF) guideline changes were unsafe and 84% would not be comfortable delaying screening mammograms even if their doctor recommended it.
  • Friends and family are a strong influence. Seventy six percent of women reported having a close friend or family member who had been diagnosed with breast cancer. Secondary analysis showed that 92% of those with a close friend or family member with breast cancer vs 77% of those without a close friend or family member with breast cancer felt women should continue to undergo routine mammography in their 40′s despite the new USPSTF guidelines.
  • The experience of false positive mammograms only reinforces women’s faith in mammogram screening. Ninety two percent of those with a prior false positive mammogram expressed discomfort with the USPSTF guidelines vs 79% of those who had not had a false positive mammogram.

This finding suggests that these patients were more likely to view the additional imaging and biopsies as a near miss rather than a false alarm. This is an important finding because it is in direct contrast to the conclusions drawn by the USPSTF, which cited psychological harm from false-positive results as one of the major risks of screening mammography in the fifth decade. Our findings are consistent with other research showing that women are very tolerant of false alarms if they perceive the issue being addressed as significant.

Breast cancer awareness or breast cancer misinformation?

Previous studies have shown that women not only over-estimate their personal risk for getting breast cancer, but also inflate their 10-year chances of dying from breast cancer by over 20-fold. They also wildly overestimate the efficacy of mammograms in lowering breast cancer mortality, believing it to be almost 100 times as effective as it actually is in reducing breast cancer deaths.

Who can blame women for believing they are at higher risks for breast cancer than they actually are? After all, breast cancer awareness campaigns have been among the most successful outreach programs ever created, with the pink ribbon being used at this point to market everything from jewelry to Kitchen Aid mixers. Whether these campaigns have actually had any impact in reducing deaths due to breast cancer remains a point of some debate, and there are those who credit the declines in breast cancer mortality more to new treatments than to increased uptake of mammography screening.

Have we lost women’s trust? 

With the disagreement among doctors about guidelines, the miscommunication of recommendations by the very folks writing the guidelines and the resulting confusion in the media attempting to report these guidelines, it’s no wonder women don’t trust their doctor’s recommendations and have made their own decisions about screening.

At this point, it’s probably easier to just write the mammo referrals once a year and move on. After all, the American College of Obstetrician and Gynecologists agrees that women should be offered annual screening. And my medical-legal risks align nicely as well, since failure to diagnose breast cancer is one of the biggest reasons gynecologists get sued.

But it that the right thing to do?

Call me crazy, but I happen to think that an informed screening choice is still the best one.

I’m not giving up yet. My patients want to make their own decisions about mammograms, and that’s just fine with me. But I’m going to do my best to be sure that decision is not just a gut response to an inflated sense of risks, but a careful decision informed by risks as well as benefits of screening and realistic expectations about what mammograms can and can’t do to lower breast cancer mortality.

To that end, here are some great resources for getting better informed about breast cancer screening:

  • National Cancer Institute  mammogram information. NCI recommends having mammograms every 1-2 years starting at age 40
  • ACOG pamphlet on mammography – ACOG recommends that women be offered annual mammograms starting at age 40.
  • American Cancer Society information on breast cancer screening – ACS recommends having annual mammograms starting at age 40.
  • USPSTF guidelines on mammogram screening – USPSTF recommends having mammograms every 2 years from ages 50-74. The decision to start biennial screening in women under age 50 should be individualized.
  • Breast Cancer Coalition -31 myths and truths about breast cancer

Margaret Polaneczky is an obstetrician-gynecologist who blogs at The Blog That Ate Manhattan.

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  • Anonymous

    You have to remember these attitudes come after decades of what I’d call, brainwashing – propaganda, misinformation and scare campaigns. Many American women are still having annual routine pelvic and breast exams, even though the evidence has been clear for a long time now that these exams are of poor clinical value and expose women to risk. Thankfully, no Australian or English doctor has ever suggested such a thing, I’d have refused it anyway…
    Also, coercion appears to be the normal way many doctors deal with women in the States – many women are still refused the Pill and other unrelated meds and in some cases, all non-emergency medical care UNTIL they agree to the annual well-woman exam, and that may include OVER-screening and inappropriate cervical screening.
    I find it astonishing that women could be treated in this way…

    The over-detection and over-treatment rates with cervical screening in the States should be a source of shame. We have our problems too, with a lack of informed consent in breast and cervical screening and we have high over-treatment rates in the latter program – but if a woman is aware of the facts and chooses not to participate or adopts a more conservative program, she can find a GP who’ll respect her decision. I did…

    Women, like men, are quite capable of making their own informed decisions – but they need unbiased and balanced information to do so…we don’t get that, we get misleading, incomplete and even incorrect information.
    The Nordic Cochrane Institute and Prof Michael Baum have my respect and gratitude – they enabled me to make an informed decision about breast screening. It shocks me when I read through the Breast Screen brochure….how do they get away with it? In sharp contrast men got risk information very quickly for prostate screening and doctors were reminded to obtain informed consent. Is there a double standard at work?
    It seems the money has been spent on screening programs that harm far more than they help, and can only be “successful” and meet targets if women are deceived and denied their legal right to make informed decisions – that’s NOT cancer screening – it violates every principle of an ethical population screening program.

    Some doctors “get it” and more are speaking out, especially in the UK – the pro-screening groups can no longer feel “safe” to say anything that suits them and protect the program – they’re being watched and challenged…
    Dr Margaret McCartney wrote in the BMJ recently, “Doctors should stop supporting unethical screening programs”…it was heartening to see so many doctors agreed with her comments.

    It will take a long time to turn around the situation in the States and many of your doctors are still peddling fear and misinformation IMO, to keep up revenue and maintain control.
    To think ACOG are now calling for girls as young as 13 to start with annual exams “that may not include a pelvic exam” – who could trust these people with their appalling track record?
    Naturally, they offer no clinical evidence for the need for these exams.  I can only imagine the damage that will be done to these young minds and bodies. Call my a cynic, but this recommendation came after pap testing guidelines were scaled back and I’m sure they realized more women were working out the rest of the well-woman exam was unnecessary and potentially harmful…
    Is this an attempt to “groom” the next generation of women to submit  without question and secure income into the future, and to make up lost income, with more women now skipping the annual exam?

    Women can hardly be blamed for staying with excess and making bad decisions – they’ve never received honest and complete information and the pressure to comply with excessive, unnecessary and potentially harmful guidelines has been immense over decades. Many of your women live in fear of their bodies – they now need this false reassurance every year.
    At the very least doctors should try to educate women – undo some of the damage, but many will be lost forever – too confused and frightened to listen – they’ll compliantly climb into the stirrups every year for the rest of their lives.

    There is an real opportunity though to prevent this happening to the next generation of women – tell them the truth and respect their right to make informed decisions. It is NOT the place of a doctor to make decisions for us or accept risk on our behalf. Change IS happening…thanks to Dr Carolyn Westhoff, Dr Gilbert Welch, Dr Joel Sherman, Dr Robert Hatcher and all of those who’ve been prepared to stand up and challenge an unethical, harmful and very unfair system. They are remember the motto: first do no harm.

    • Violetta V

      I totally agree. As a woman who looked at the available data and choose not to have mammograms I am always dreading “you should have a mammogram” discussion at any doctor’s visit. I also try not to talk about my decision with others.

      About the media’s not influencing the decision – one of the conclusion of the articles about. I think media influences the decisions very much. One must remember that when USPSTF recommendations came out, the media was very critical of it. For every balanced article discussion USPSTF decision from the evidence perspective, there were several articles arguing against it including those signed by MDs. The tv-doctors whom many people watch are also almost invariably pro-screening. Most people aren’t capable of distinguishing the evidence-based recommendations against TV hype or actors and actresses coming out with “screening saved my life” messages.

      This is an important finding because it is in direct contrast to the
      conclusions drawn by the USPSTF, which cited psychological harm from
      false-positive results as one of the major risks of screening
      mammography in the fifth decade. Our findings are consistent with other
      research showing that women are very tolerant of false alarms if they
      perceive the issue being addressed as significant.

      One doesn’t preclude the other. Perceiving  a false positive as the issue being addressed and a good thing doesn’t preclude experiencing anxiety over the result and suffering stress or higher blood pressure from it.

      Once I had a mole that a doctor noticed and sent me to a dermatologist. The mole was black but otherwise it looked small and regular, but the doctor while telling me the probability of it being cancer is low still wanted to make sure. Even though I understood that the chance of it being nothing was much higher, I was still worried. For a couple of weeks until I got the result I had no life. No matter what I did this issue was lurking in my head. My blood pressure went up considerably too: it usually normal without drugs, but it got way into abnormal range during that week. It turned out to be nothing. Yes, I was glad that the doctor checked it out, but I also had a lot of anxiety which probably wasn’t beneficial to my overall health.

      Maybe I am too anxious a person – I am also known to have a white coat blood pressure starting a couple of days before a doctor’s visit and dropping immediately after (this is why I check my blood pressure regularly), but I’d imagine there are others like me.

      A woman who is “overdiagnosed and overtreated” also doesn’t know or understand she may be harmed. Because of the lack of knowledge, the vast majority of women with DCIS think their life was saved and cannot grasp that they may have lived their whole life without ever knowing they have cancer. Doesn’t mean they weren’t harmed.

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