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.