It was the breast of times, it was the worst of times

This week, I have slowly been "coming out" to my friends about my BRCA2 status and this blog. To be honest, I'm more sheepish about admitting to being a blogger than a genetic mutant. (I keep waiting for someone to say "2003 called. It wants its technological trend back.") It's not that I'm afraid that people will read this blog; I'm afraid people won't. I enjoy the idea of blogging because it's a bit like purposefully leaving your diary open on a bus stop bench; you know some stranger is going to happen along and be too curious to resist. But what if no one is waiting for the bus? (Forgive my clumsy metaphors; I'm a huge fan of them and have no plans to drop the habit of constructing them.) Sometimes I think mine is the most interesting story in the world to tell; sometimes I worry that no one will care. There are lots of ladies out there like me, and many of them are writing about their experiences; this both makes me feel grateful to be part of a community and humbled because I've been stripped of the sick power that derives from convincing yourself you are the only one in the world with a particular problem. In the past few days, though, as I've explored the BRCA blog community, I've come to feel normalized. And this has helped me tone down the anxiety and fear that so consumed me earlier in this journey.

Anyhoo, when I sent an email to some close friends about my boobs earlier this week, I created a list of questions they might have, which I called a YAQ (which stands for Your Anticipated Questions and is fun to say because it is a homonym for a breed of long-haired Himalayan bovine). I thought it might be worth posting here in a slightly modified form in case any stragglers that aren't obligated to read this by the laws of friendship and family stumble upon my blog. This will help 'em catch up on what this lil project is all about.

So what’s wrong with you?

Nothing yet. But I’m a BRCA2 genetic mutation carrier, which means I am at high risk for developing certain types of cancers, most notably breast cancer and ovarian cancer; in raw numbers, I have an 85% chance of developing breast cancer at some point in my life and a 40% chance of developing ovarian cancer. I don’t – as far as I am aware – have cancer, but basically what the diagnosis indicates is that it’s not a question of if but when.


How did you find out about it?

My father’s family (from whom I got the gene) has been plagued by cancer throughout the generations. An astute aunt compiled, after my 31-year-old cousin was diagnosed with breast cancer last summer, a family history of cancer diagnoses and deaths in the family and took those findings to a genetic counselor. From the history and a blood sample, it was concluded that the BRCA2 gene was present and likely responsible for much of the cancer in our family. So everyone got tested. Some people had it. Some people didn’t. My grandfather had it. My dad has it. And now I do, too (there was a fifty percent chance that I wouldn’t have the gene, but, you know, shit happens).

OMG Do I have it too?

Probably not. The mutation it most prevalent in the Ashkenazi Jewish community (and apparently parts of Eastern Europe, from where my family hails), but its incidence in the general population is estimated at 1 in 800, so it’s rare as raw meat. And family history is really the greatest indicator of genetic predisposition. So if your family is healthy and the old folks die of boredom, you’re probably in the clear.

That sucks for you.

That wasn’t a question.

How do you feel about how much that sucks for you?

I’m dealing with its suckiness. Today I’m feeling like it’s no biggie. Tomorrow I could be immobilized by fear and grief.

So what’s the plan?

The worst thing to do right now is to do nothing, so I’m weighing my options. There are three approaches to responding to this diagnosis. The first is simple vigilance: get screened often so as to catch any lumps and bumps in the early stages. The second involves a five-year course of a chemotherapy drug called tamoxifen, which will send me into early (and temporary) menopause; this will cut my cancer risk in half. The last option is also the most radical: a bilateral prophylactic mastectomy. In layman’s terms, that means cutting off your boobies before they kill ya. I’m leaning towards doing this.

Wait, what? What are ya nuts?

No, not clinically. But listen, I know it’s radical. I know it seems extreme. But here’s the thing, I have and 85% chance of getting breast cancer. If I don’t have breasts, my chances plummet to less than 5% (which is well below the national average of 10-12%). Trust me. I’m not thrilled about it either. I love my breasts. They’re really lovely. They have brought me many years of joy, and have enriched the lives of many. But they ceased being so awesome the moment I learned they could kill me.

But what about just being vigilant, getting routine screenings and regular exams?

For those of you that do not know me personally, the truth is that I can be, well, a little anxious. I’m no good at waiting for bad news; I can get a little unhinged. So the monitoring approach doesn’t really suit me. Like I said, it’s not a question of if but when, and getting screened four times a year translates to four periods of terrible anxiety as I wait for the (possible) bad news.

Ok, but really, a mastectomy?

Here’s an analogy, clumsy as it may be. Suppose you were told that there was an 85% chance you would be in a plane crash – which may or may not kill you -- at some point in your life. (Right there, I’m guessing most of you would opt for the train.) You could hedge the odds a little, however, if you became an airplane mechanic; but even if you personally inspected every plane you flew on, you would not be able to prevent the crash, only know in advance that it was going to happen (so, theoretically, to extend the metaphor, you could make sure you have an exit-row seat on that flight). The only way to reduce your risk of being in a plane crash would be to not fly. So that’s, in metaphorical terms, what I’m going to do.

What about your ovaries?

Slow down there, pal. I’m getting my knockers lopped off. I can only deal with the removal of one ladypart at a time. (The non-smart ass answer is: I’ll probably need to say bye-bye to those, too, but not for about ten years if they remain cancer-free.)

Why are you writing publicly about this very personal thing? It’s your boobs. Shouldn’t you be a little more, well, modest?

Probably. But the truth is, advocacy and activism regarding BRCA mutations are still in their infancies; only recently has genetic screening become more common among women with families histories of cancer. I feel like, by sharing my story, I might be able to contribute to the nascent culture of personal narratives on this subject. I also wanted to create a forum where I could stay in touch with my friends and family throughout the process. And this seemed like the best forum to do this.