ACS Screening Guidelines

The American Cancer Society released new guidelines this week for breast cancer screening. We live in a headline driven world, so despite the complexity of the guidelines, I think most people saw only this sort of thing: Cancer group’s mammogram advice: Start later and get fewer.

My heart sank a bit when I heard that they recommend that women of average risk start screening at 45, instead of their prior recommendation of 40. I know that the evidence points to this as the indisputable truth and that’s what I espouse. But I’ve detailed my own path to diagnosis here before. Mammography’s role in it is complicated.

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The Bald Days

In summary: I was told my baseline mammogram at age 40 was clear. My mammogram the following year showed nothing in the breast, but the image caught the edge of a lymph node in my armpit that looked weird. They brought me back for more mammograms which all looked clear. Still, there seemed to be something up with that lymph node.

Fast forward through months of tests, some bad information, physical and emotional agony, and I found out that I had an 8 cm tumor in my right breast along with a 1 cm tumor in that freaky lymph node.

The reader of the mammogram missed the tumor in my baseline (my breast surgeon saw it when she looked at the films during the diagnostic process). S/he missed the 8 cm monster in the second one. Someone missed it in all the diagnostic mammograms.

Both of these, mind you, were digital mammograms done in 2007 and 2008. Not in the dark ages performed by Marie Curie.

Did mammography fail me? Yep. Did it save my life? That remains to be seen, but the ensuing year of treatment seems to have bought me 7 years and counting.

That’s the thing about evidence-based medicine. It’s correct. Of course it’s correct. Maybe thousands of people are screened needlessly for one cancer to be found. Maybe some cancers are found and treated needlessly.

But what if you’re the one to whom it mattered?

Of course the tempest in a teapot got roiling as the tin-foil hat crowd theorized that the ACS is in bed with the insurance companies, scheming to avoid paying for screening. (I’m not a big believer in any conspiracy theory because they all assume a level of competence and collaboration that I don’t believe exists.)

To me, the big harm here is not the ACS guidelines. It’s our infuriating, self-destructive need to oversimplify. If you read the actual guidelines, they’re pretty nuanced. For example:

Women ages 40 to 44 should have the choice to start annual breast cancer screening with mammograms if they wish to do so. The risks of screening as well as the potential benefits should be considered.

And:

Research does not show a clear benefit of physical breast exams done by either a health professional or by yourself for breast cancer screening. Due to this lack of evidence, regular clinical breast exam and breast self-exam are not recommended. Still, all women should be familiar with how their breasts normally look and feel and report any changes to a health care provider right away.

Here is my fear. We’re all busy people. If you’re like I was pre-2008, you know very little about breast cancer. You might see a headline and say, Great! No squishing for another five years! And for most people, that’s true.

For me, it would not have been a good thing. I have no desire to think about it beyond that statement.

I knew I had lumps before those mammograms, but doctors had told me I was lumpy. I should have spoken up, but I didn’t. This would have mattered:

Still, all women should be familiar with how their breasts normally look and feel and report any changes to a health care provider right away.

Education matters here. Self-education really. And that scares me because people have different abilities and access to good information. That’s why I keep doing this – keep saying the same things over and over. It’s all complicated and in our world of information overload, it’s hard to break through.

It’s incumbent on all of us who have voices to use them. Use them until you’re hoarse, then rest up and use them some more.

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