Thursday, November 19, 2009

Ma'am, I'm going to need to see some ID

If you follow boob news (and who doesn't?), you've undoubtedly heard about the new recommendations for mammography issued by a government task force that up the age of first screening to 50 from 40 and reduce the frequency to every two years from one. The response, at least from my vantage point, has been swift and angry. Many organizations, such as the American Cancer Society and The American College of Obstetricians and Gynecologists, have spoken out against the new guidelines, and respected cancer treatment centers, including the Mayo Clinic and M.D. Anderson, according to this article, will not be be adopting the task force's recommendations. On the other hand, well-known breast surgeon Dr. Susan Love commended the panels findings on her blog (and was quickly excoriated by commenters). One voice missing from this debate, as you've likely noticed, is mine. The long, harrowing wait for my opinion is now over: I think this proposed change could be fatal for young women, especially BRCA mutation carriers who are unaware of their status.

Here's the thing about BRCA mutations. Most women don't learn they have a mutation because they've been tested; most women learn they have a mutation because they have cancer (and then get tested). I can't find any figures to confirm this, so I take full responsibility if this assumption is incorrect. But I don't think it is. I mean, how does anyone realize they might be at "high-risk" (a population, it should be noted, that is exempt from these guidelines--but more on that in a moment)? They watch the women around them fall victim to various cancers. And then an astute oncologist will suggest a hereditary correlation and order gene testing. And then, once they have that information, that they and the women before them who got sick were mutation carriers, they can begin their screenings and preventative measures.

But here's the thing. It doesn't always work out like that. After all, "high-risk" women are a self-identified group. You can't be considered high-risk by the medical community unless you have someone in your immediate family who has had breast cancer. Guess who doesn't have breast cancer (except for my paternal grandmother, whose cancer was postmenopausal and therefore unlikely to be caused by a mutation) in her immediate family? ME. I don't. And so, if I didn't know that I was a mutation carrier, I would not be considered high risk. And I wouldn't be able to get a mammogram. And I might get breast cancer while they weren't looking for it. And I might die.

As I've written before, I inherited my mutation from my father, who inherited it from his father. In our immediate branch of our family tree, there are no obvious signs of hereditary cancer, mostly because there have been no women for it to manifest in (my grandfather had two sons, my father and uncle, and I'm the oldest of their children, three of whom are women). I would be the first. Now, imagine that my father was a different person, someone who wasn't in touch with his extended family; the mutation was discovered by one of his cousins, so if he wasn't in touch with that part of the family (and many families don't have the kind of remarkably open lines of communication we do), we would never know. Again, imagine my father was a different person, someone who, even knowing that there was a genetic mutation somewhere in our bloodline that was causing cancer, he decided he'd rather not know; if he decided not to test, or decided to spare me from the anxiety a BRCA positive result might cause, I would never have known I had the potential to carry the mutation. There are so many what-ifs here (and luckily for me, all of them are hypothetical) but they demonstrate something indisputable: I would not be considered high risk if I was not known to be a mutation carrier. And, according to the new guidelines, I would not be screened for breast cancer until I turned 50. By which time, I shudder to think, it might be too late. And that's what scares me most about these recommendations. According to the New York Times, the new screening guidelines do "not apply to a small group of women with unusual risk factors for breast cancer." But how does a woman know if she qualifies to join our elite cohort? If she's like me, she wouldn't know. And that's terrifying.

But the panel's recommendations raise another question. After all, not only is it changing the guidelines for mammography, it is recommending against the teaching breast self-examination. So if mammograms are unnecessary and self-exams are ineffective, then how do you screen for breast cancer? The answer (which I don't have) seems to be missing from the debate. Upon hearing the news of Tuesday, my first inclination was to think anecdotally about all the women under the age of 50 I know who have been diagnosed with breast cancer and how they discovered it. Every single one either found it on a "routine" mammogram or during a self-exam. So if that's the way we find breast cancers in young women, and those methods are now being rejected, how will young women find their cancers? (The cynic in me suspects they'll find them after they've entered the lymph system and migrated to another organ, after which their "breast" cancers are no longer considered curable.)

I've had two mammograms in my life. The first, about a year ago, I literally cried my way into. I was at the very beginning of this journey and didn't speak the language or understand the mutation the way I do now. My insurance wouldn't cover the gene test (my father had not yet been tested), and I was consumed by anxiety. So I got my internist to write a script for a mammogram. I didn't even care if insurance would cover it or not; I just wanted to get screened. On the morning of my appointment, I was called up to the reception desk and told I was too young to receive care. I welled up and protested, "But the women in my family are getting breast cancer and dying!" I got my mammogram. The second was this spring, after an MRI turned up suspicious changes in my left breast. The mammogram and ultrasound came up clear, and I was given a clean bill of health. And those are the only two mammograms I'll ever have. After my surgery next month, there won't be any breast tissue left to screen.

So on a number of levels, these recommendations do not apply to me. But they still affect me, especially on an emotional level. I never cease to marvel at the fact that I am a mutation carrier and had the opportunity to learn my genetic destiny before I got sick. After all, unlike many of my peers in the BRCA community, I did watch the women around me fall sick; I did not grow up somehow knowing I would someday share their fate. I had, until last year, little reason to suspect I was at high-risk for breast cancer. That was something that happened to someone else. Except that someone else turned out to be me. (The legacy of this is that sometimes, I have moments, sometimes in the middle of a conversation with another mutation carrier, where I almost step outside myself and think "This isn't happening to you. It can't be. What on earth are you talking about? You don't have the breast cancer gene! How could you? That person you are talking to is going to be very upset when she realizes you're a fraud. What are you doing associating with this tragic group of people? You don't belong here!" But the truth is I do. I just have a hard time reconciling the massive shift in my life view since learning I'm a mutation carrier. Sometimes, I just can't believe this is happening to me.) The fact that I know I'm high-risk is a minor miracle to me. I can't help but worry that these new recommendations will have a devastating, and fatal, impact on women who aren't as lucky as I am.


  1. I had my first routine mammogram just before my 41st birthday. My doc sent me because of my age. My father had breast cancer ten years ago but none of my doctors every said I was at risk. My mammogram showed early stage cancer and that is when I first learned that two aunts and my grandfather also had breast cancer. I was a toddler when all that happened and over a thousand miles away from extended family. I don't think I ever would have learned of my brca mutation, until it was too late, if I had waited til I was 50 to get a mammogram.

  2. Steph - this was a great entry, you have an amazing way with words. I, like you, am a mutation carrier, with no known cases of breast cancer in my family YET - I don't want to be the first either, which is why I too, am going to have the preventative surgery. While this new idea of theirs excludes high risk women, you stated it so well when you said that we don't always know that we are high risk! It's scary to think that they are not encouraging self exams - which catch over 70% of breast cancer! It's surprising that ignorance is being promoted - what a way to follow up breast cancer month.
    Teri S.

  3. I am sure I haven't read as much about these new guidelines as you have, but I was struck by the part about self-exams not being all that effective. It seemed like such a disconnect next to the whole waiting-longer-for-mammograms advice, especially if mammograms, you know, work, and self-exams don't. (Or do they? I'm confused.)

    I'm adopted. No family medical history at all. I have no idea if I'm at high risk, medium risk, "regular" risk...for anything. Filling out the family history forms in doctors' waiting rooms makes me feel lonely, how dumb is that? I don't even know what I should be worried about, so between "everything" and "nothing," I tend to fall on the "nothing" side. Which I realize could be a huge mistake.

    I should email my primary care physician and see what she says. Great post, Steph, as always.

  4. Thanks for writing, Susie, and raising such a good point. What a catch-22! The guideliness clearly don't take into account adopted women or women without knowledge of an extensive family history. You need a family history to get a mammogram before age 50, but what if you don't know your family's history at all? Fascinating question! I'd be interested to hear what your physician recommends.

  5. the rec is not that self exams are ineffective it is that research has shown the act of teaching woman how to do a self exam is no better at detection than not teaching. many woman that detect their breast cancer do so accidently, not as part of a monthly self breast exam.

    also, the point at which a breast cancer becomes detectable by touch does not equal early detection. that cancer may have been present and growing for months to years at that point and does not mean that it hasn't had the opportunity to spread.

    mammograms are notorious for false positives (as the author as experienced herself) leading to anxiety riddled biopsies that reveal nothing.

    for MOST people, these new recs will change nothing. despite all of this, the author has a huge point about the lack of screening for individuals unaware of their high risk status. i don't know the answer to that problem with these new recs, but i'm sure with healthcare reform moving forward, we will continue to see more changes to other federal health recs as the need to cut medical bills becomes more demanding in order to pay for the health plan.

    obviously, when doctors (like the Mayo Clinic) recommend their patients to get mammograms at 40 those patients will be paying out of pocket because these changes cut insurance with a sharp edged sword!