Leda Derderich wishes she had.
Dederich had stage IV breast cancer diagnosed at age 45, two years after she and her doctor discussed and dismissed the need for a routine screening mammogram while breastfeeding at age 43. That decision to delay screening mammograms may have meant that she lost the chance to find and treat her breast cancer before it had spread beyond the breast. It’s a decision she regrets now, and blames on the confusion around mammogram guidelines.
I have had a much harder time accepting that I was not screened for breast cancer before it was too late. Not because I couldn’t be bothered, was too anxious, or didn’t have health insurance, but because the guidelines for screening women in my age range are one hot mess of a controversy, and I fell through the cracks.
Two years before my diagnosis, when I was 43 years old, I asked my doctor if I should get a mammogram. I had a vague understanding that breast cancer screening protocols were in flux, but I wanted to be sure. My risk profile for the disease was very low. I was nursing my infant daughter, and I really did not want to stick my breasts in a vice grip (it’s not really that bad, but that’s how I was imagining it). My doctor told me that if I didn’t want a mammogram, I didn’t need to get one.
Her counsel was based on a set of widely used guidelines at the time that say having a mammogram is an “individual” decision for women under 50 at average risk for breast cancer. She had no reason to believe I was at risk, and I had no reason to believe I should question her judgement.
What I didn’t know, at the time, was that there are multiple and conflicting breast cancer screening guidelines for women between the ages of 40 to 49.
Dederich is right. There is controversy around what’s best for women in terms of screening mammograms, a controversy that began in 2009 when the US Preventive Services Taskforce rocked our world with their recommendation against knee-jerk, routine mammogram screening in all women between ages 40 and 49.
Now, almost a decade later, the guidelines for mammogram screening still vary, though not as much as you might think. With one notable exception. Allow me to summarize for you.
Screening Mammography Guidelines – Not as Out of Sync as You Think
With some minor differences in wording and nuance, the US Preventive Services Taskforce, American College of Physicians (ACP), American Academy of Family Physicians and 2017 ACOG guidelines in essence recommend that women at average risk for breast cancer be offered mammogram starting at age 40, but make informed, individualized decisions about having mammograms depending on their individual risk, personal values and concerns. The frequency of mammograms, if women choose to have them, varies between one and two years. The American Cancer Society guidelines recommends individualized choice between ages 40 and 45, with all women starting screening at age 45.
Wrapped into those guidelines is the fact that delaying mammograms to age 45 or age 50 accepts a small but real increase in breast cancer deaths – on the order of around 1-2 extra deaths per thousand women. In return for delaying mammograms, women get less false positives and less unnecessary biopsies. It’s estimated that if you have an annual mammogram starting at age 40, you have a 60% chance of a false positive and a 7% chance of having an unnecessary biopsy, compared with a 40% chance of false positive and 5% chance of biopsy if you wait to age 50 to start routine mammos.
Also considered in the guidelines are the fact that mammograms do not prevent breast cancer and do not find all breast cancers at an early, curable stage. They miss about 10% of cancers, and may not detect rapidly growing cancers that arise between routine mammograms and spread beyond the breast almost from the get go. In addition, the cancers mammograms do find may be the slow growing kind that would never kill you anyway, or are not really cancer (we’re talking DCIS), but can lead to surgery, radiation and even mastectomy.
The American College of Radiologists continues to recommend annual mammograms for all women starting at age 40
The one group still recommending routine annual mammograms for all women starting at age 40 (ie, no individual choice) is the American College of Radiology (ACR). The ACR is now on a campaign to re-inform women about mammogram screening, putting their own spin on the data to get their message out to the public that the everyone else’s guidelines are just plain wrong.
Is the ACR right? Should the US medical profession just go back to telling all women to have a mammogram starting at age 40 ? If so, we’d be at odds with most of Europe, where women at average risk of breast cancer are not invited to screening till age 50, and where breast cancer deaths are not higher than those in the United States.
As a compromise, the ACP and ACR in 2012 issued a joint statement on points of agreement designed to ensure that mammograms remain affordable and available to all women starting at 40 who want them regardless of risk. But the differences in recommendations between the ACR and other organizations remains.
Which brings us back to the fact that when it comes to mammograms, for now, women have a choice to make.
It doesn’t matter what the guidelines say if the decision you make about having a mammogram is the wrong decision for you.
Dederich regrets the decision that she and her doctor made, and feels that she did not have the information she needed to make the right choice for herself. She feels that because the medical community is conflicted, our patients are confused and therefore misinformed.
Smart, dedicated people are deeply engaged in this issue. But while they compare data sets, grapple with the statistical significance of lives like mine, and churn out conflicting guidelines, far too many women are left confused and misinformed about what is best for our health and long-term survival.
This is exactly why my colleagues and I created Breast Screening Decisions*, a free website and Iphone App designed to help women make an informed decision about screening mammograms. Using BSD, a woman can determine her own risk of breast cancer (which, even among low risk women, is not zero), explore her own personal values around screening, learn about the benefits and harms of screening mammograms, and see for herself what the difference is between starting annual mammograms at 40 vs waiting till 50 or having them every other year vs. annually. There is a real difference in mortality, but it’s small, and we’ve created visuals to help you see it accurately.
Some women don’t care a hoot about false positives or unnecessary biopsies or the fact that their mammogram might detect a cancer that would never kill them but results in them undergoing surgery, even mastectomy. It will all have been worth it if they catch a cancer early. And even if they don’t catch it early, at least they feel they did everything they could have done to do so.
On the other hand, there are women who want to avoid mammograms at all cost. Perhaps they or a loved one had a bad experience with a false positive, or a biopsy that resulted in complications, or they just believe they will not get breast cancer and don’t want the harms of mammography.
What’s important is that women feel they’ve been given the information they need to make the choice that’s right for them.
Decisions are Not Easy
The hard thing about making decisions is that the decision we make today might be different than the one we’d make in hindsight, when we know how those odds we considered actually played out. I try when I can to tell my patients who are making choices to project themselves into future, having either a false positive, DCIS or a breast cancer diagnosis, and ask themselves if they would then regret the choice they are making today, whatever that may be. If their choice remains the same, it’s probably the right choice for them. If not, then they may want to rethink it.
* Breast Screening Decisions (BSD) is completely free as well as ad-free, was built using funding from the NIH, and is maintained using private unrestricted institutional donations. I have no financial interest in BSD.
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