Wednesday, April 7, 2010

The OTHER Surveillance

Last week, I wrote a couple of posts about what it means to be a young women who has chosen to have a risk-reducing mastectomy and whether or not that makes me "pro-surgery." The conclusion, of course, is that, while I certainly feel that a PBM was the right choice for me, I support all women facing hereditary cancer, no matter how they chose to manage that risk.

But there are two sides to the BRCA coin.

Whereas I chose a preventative mastectomy to manage my breast cancer risk, I'm currently opting for ovarian surveillance. In other words, while it was relatively easy for me to say goodbye to boobs, I'm not yet ready to part with my other lady parts.

This is a factor of my age. At 31, I'm not done having kids yet. That's because at 31, I haven't even started having kids. And, looking at my calendar, unless I get an unexpected urge to reproduce, I'm giving myself a few more years of sleeping late, going out, and spending my disposable income on shoes and vacations and dinners out. In other words, I hope to be a DINK (dual-income, no kids) for a little while longer. But not forever. I think I want kids... (I've never been one of those girls who say, "All my life, all I ever wanted to be was a mom." Spending any time with a baby reminds me how grateful I am I don't have one). But I know, at least, I want the possibility of having them. So I'm going to need my ovaries some day. Just not today.

I plan to keep my ovaries at least until I turn 40. As a BRCA2 mutant, I'm "lucky" (lucky in quotes because ... pshaw ... no one should have to plan when they are going to pull out their ovaries) that I have a less astronomical risk of ovarian cancer (about 1 in 4 vs. 1 in 2 with my BRCA1 counterparts) and, therefore, a little more leeway with how long I can keep my ovaries. (When I was given my positive genetic test results, the doctor told me I should think about an oopherectomy at about 45. That seems to be pushing it a bit, but I'm glad I have the option to stall if I need to.)

To be honest, I'm TERRIFIED of removing my ovaries, far more than I was about removing my breasts. I know this is counter to what many women feel when they get their BRCA results -- for many, an ooph is a no-brainer, whereas the mastectomy is the toughie. (And studies support this. An oopherectomy increases survival rates in BRCA mutation carriers and lowers breast cancer risk, too.) But this is also a factor of age. I got my genetic test results when I was 30; if I was going to do something, it was going to be the mastectomy. (Incidentally, I've noticed a generational divide on this issue. Many young previvors like myself are eager to take some kind of action, and we don't feel as "attached" to our breasts -- especially once we begin to think of them as ticking time bombs -- so they are expendable. As Bright Pink founder Lindsay Avner told CNN in an interview last year, "I mean, after all, what difference does it make? It's just a boob.")

On the other hand, ovaries make a big difference. And their absence has lasting effects on your whole being, body and mind. Aside from instantly losing all the estrogen in your body (which can affect everything from libido to body weight), women in surgical menopause are more prone to cardiovascular disease. But most troubling to me, women who undergo oopherectomies are at elevated risk for memory loss, dementia, and, as this report kindly euphemizes, "cognitive decline." Let me be clear: THIS SCARES ME SO MUCH MORE THAN OVARIAN CANCER EVER COULD. My brain is my most prized possession. I take great care to exercise it. I need it to work, to teach, to write. I am in the midst of what I hope is a long and successful career in academic publishing, and you can't even imagine how heady my work is. If my brain turns to mush, I'm fucked. In other words, it's the side effects of the oopherectomy that have me scared, not the disease it's intended to prevent.

I've been thinking a lot about aging lately. I've been picking grays from the Susan Sontagian-sweep of my crown, I'm spending a small fortune on night creams designed to minimize my crows feet, and I'm slowly beginning to accept I'm not a kid any more (even if I still occasionally act like one). I think there is a lot to look forward to in life, and imagining getting old before my time (and not just physically) scares the crap out of me. Cognitive decline in my early forties does not jive with my definition of quality of life. (Incidentally, I plan to avail myself of any and all hormone replacement therapies. This might alleviate some of the side effects of menopause, but considering I feel like I just got my period, oh, last week, it's still hard to even imagine the M word in my near future.)

It's clear I have not accepted -- at least with the same grace I did my breasts -- that my ovaries will have to go. But I've got some time to get used to the idea.

In the meantime, even though there are no reliable methods of detecting ovarian cancer at an early stage, I'm doing increased surveillance. And I do so with the complete understanding that it's a bit of a charade. Last Wednesday, I saw my ladydoc, who is also a BRCA+ babe, and she wrote me a script for my twice-yearly transvaginal ultrasound and CA-125 blood analysis. These two tests are currently the only screening options available to women at high-risk for ovarian cancer, and they are pretty much medical hocus pocus. And elevated CA-125 score could indicate something amiss, or it could uncover routine fluctuations in your hormones. Ultrasounds only detect things big enough to see, which is usually when things are already in the shitter.

But, I play along. I like sleight of hand tricks. I like smoke and mirrors.

As I laid, legs splayed, feet in stirrups, and watched as my insides were projected on a high-definition television screen above my head, I wasn't scared; I was skeptical. What are those undulating masses on the screen? And how can anyone discern anything from that grainy picture? My doctor assured me my ovaries were "lovely." I just saw static on the screen, but, hey, if you say so. I had my blood drawn for the CA-125; again, I wasn't scared. I was resigned. Resigned to play along. Resigned to wait for something better. My score was a 7. I'm -- so far as any one knows -- in the clear.

So this is my life with my ovaries. An oopherectomy at 31 is not the right choice for me. It may be for someone else, and I support that decision, as long as it's been reached with an understanding of all its consequences. But I guess in the end, I'm not for or against anything. I'm just trying to find my way through this mess, just like everyone else.


  1. I saw the link to your blog on the facingourrisk website. Reading your post was almost eery--like reading something I wrote myself.

    The "cognitive decline" thing really is the 800lb gorilla in the room, isn't it? I suppose if your job is to prevent ovarian cancer, taking out a patient's ovaries is a no-brainer. Maybe that's why the docs just gloss over the "cognitive decline" part. But I, like you, would be fucked if my brain power abruptly dwindled to the capacity of an 85-year-old. There is just no good way to deal with the damn ovaries!

  2. Hi! I am also BRCA2 and I am planning on having a PBM in July, and am deciding to just do the surveillance route as well for my ovaries..I don't want to go through menopause and stuff at 26 years old.Granted, I already have kids, but just because I have kids doesn't mean I should have to have my ovaries ripped out of my body, due to my BRCA2 status .I write a blog about my journey with all of my BRCA stuff, and I wrote one about this specific topic, and had someone comment back about how "I shouldn't be so comfortable in the thought that my ovaries will be okay", and she thought that I should get an oophorectomy and crap...It really pissed me off, to tell you the truth. I know she was probably trying to be helpful, but I didn't take it that way..

    So I'm glad that there are other women out there like you, who understand my outlook on the whole thing. As far as I'm concerned, everybody's BRCA journey is their own....If they want to never have a PBM, or never have their ovaries removed, then that's fine. If they want to do the chemo. prevention route, then that's fine.. I just don't like it when people try to tell you what to do,merely because it's what they did. Pisses me off! So thanks for not being one of those women who think that just because they had their ovaries removed, then all BRCA "mutants", as some call themselves, should too.