maybe BRCA isn’t the worst thing in the world

When I tested for the BRCA gene mutations, I kept remembering a storyline on the show Everwood. Everwood was on in the early 2000s, but I never watched it until reruns aired on the ABC Family channel. I remember watching it after getting home from my part-time job in college, and for some reason, their genetic-testing plot line has stuck with me all these years.

A main character in the series tests for the Huntington’s disease gene. As with most genetic issues, she had a 50/50 chance of having the gene. I believe that in the series, her father was the one with Huntington’s – a degenerative disease that causes your mind (and body) to completely decline, eventually requiring full-time care. The girl was terrified of testing, terrified the results would be positive and she’d have to live the rest of her life knowing this horrible thing was going to happen. When I got my own genetic testing, I could relate to that fear, that uncertainty.

In a recent episode of the show Private Practice, the Huntington’s disease gene reared its ugly head again. A character’s friend is afraid to be tested, saying she’ll kill herself if she tests positive, because she doesn’t want to meet the same terrible end as her mother. The woman received no genetic counseling, as the doctor performing the test was her friend and declined to offer it (TV medical ethics are awesome). I won’t go into the specifics of the plot or the outcome of the test, but they did realize in the end that counseling is appropriate in cases like these.

It got me thinking. I won’t lie – I was devastated when I tested positive for the BRCA mutation. Really, who wants to know they have an 87% chance of developing cancer? It wasn’t exactly welcome news to me, and I spent a few months wishing I’d never been tested, that I could just live out my life without ever knowing. And then I realized – finally – why all these other women had been saying the BRCA mutation was a blessing, that they were lucky to know their status.

I don’t have the mutation for Huntington’s disease. I don’t have the mutation for Alzheimer’s disease. If I did, I really don’t think I’d want to know; there’s no prevention, nothing you can do but wait and hope. With BRCA? I have choices. Sure, the choices might suck – no woman in her right mind would want to remove her breasts just for kicks – but they’re choices. I can do something to prevent cancer, and the only reason I have that option is because I know my genetic status.

It sucks that I am at such high risk for breast and ovarian cancer. It sucks that I’m at higher-than-normal risk for a few other cancers. I wouldn’t wish it on anyone.

But I am lucky. I may have crappy genetics and scary risk factors, but I have something to do about it. I’m lucky to have been able to test, and I’m lucky to have the options I do to choose my own fate. Unlike a lot of other people, I don’t just have to wait, I can act. I can prevent.

3 thoughts on “maybe BRCA isn’t the worst thing in the world

  1. Very thoughtful ideas on a very hard topic. I agree with you about not wanting to know about something that you wouldn’t ever be able to do anything about, like the diseases you mentioned. I wonder if people trick themselves into thinking they have it earlier than they do, like a self fulfilling prophecy?

    • They probably do – I know I certainly would. Then again I have a higher level of anxiety than a lot of people (ha!) but I’d be coming up with signs that weren’t there to point to some deadly disease. I think that would not be a very fun way to live.

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