Getting into my genes

Today, before work, I stopped by the University of Michigan Hospital to have blood drawn for genetic testing – specifically, for the nefarious BRCA1 and BRCA2 mutations they’ve identified as substantially increasing a person’s risk for breast cancer.

The process itself is so mundane as to seem anti-climactic. I mean, here I am, taking a huge step toward knowledge that has the potential to change a great deal in my life, yet I just smiled at the kindly U-M parking attendant (who I’ve come to like in my few previous visits) and confirmed that I had an appointment; I took the elevator two floors up to the first floor, wondering again why the first floor isn’t the ground floor; I was led back to an exam room, by a chatty woman named Kara, where I read and signed a consent form; I met another woman who wrapped a tourniquet tight around my left upper arm and flicked the skin on the inside of my elbow for quite some time (which is typical) before I felt the quick bite of a needle and watched my dark blood flow quickly through a line and into a test tube.

And that was pretty much it. Kara explained that she would send out my blood sample later today, because she wouldn’t want it to freeze before it got picked up; and she told me that though it normally takes two weeks to get results, it might take longer just now because of the holidays. Which I expected.

With that, I bundled myself back up in my winter gear and left. But on the drive to work, it was starting to hit me. I tried to imagine the two scenarios that now lie before me. All test results are given in person only, so either way, in a few weeks, I’ll be sitting in a room with a doctor who will tell me that I have the same odds as any other person of getting breast cancer in my lifetime, or she will tell me that because of my genetic makeup, I’m at a much higher risk. (This won’t be conclusive about whether or not my mother had this mutation, by the way; any child of someone with the gene has exactly a 50/50 chance of getting it.)

I have no gut feeling about how this will go. I’ll be surprised by either answer at this point, honestly. But because of my mom’s battles with the disease, and her own mother’s early death from it, I felt like I had to find out anything I could.

My doctor urged me a couple of years ago to talk with my mom about being tested, but in discussing this with Joe at the time, he raised two good points: at the time, Mom, usually tough and cheerful, was going through treatments (during her fourth and last battle with cancer) that had brought her low, and asking her to go through yet another medical procedure felt more than a little cruel; and second, if she’d tested positive, she’d likely have felt guilty.

The last part rang particularly true to me. Though it’s not rational – we can’t help what genes we are born with – I understand the emotional sense of this response, now more than ever. For if I get a positive result, one of my points of immediate anxiety will be Lily, and whether or not I’ve passed the gene on to her.

Then, all kinds of complicated, ethically tricky questions arise, of course. Would I then have them test her, or would I wait to let her decide as an adult that she wants to be tested? Would this affect our decision as to whether or not we wanted a second child? And regarding my own health, how do I respond? Something radical but definite, like a double mastectomy, or would I go pharmaceutical, ala tamoxifin (though my mother reviled the drug’s side effects)? Would I just elect close monitoring and hope for the best, or would I ultimately be unable to live with the chance of the cancer developing under the radar?

The answer, of course, is I don’t know. I don’t know the answer to any of these big questions yet precisely because I’m not facing them yet. The folks at U-M’s Cancer Center – and it chills me to walk in there as a patient, knowing my Mom had been there once herself – informed me of the various options I would have, but as is true of many, many intense situations, I think it’s impossible to really know how you’re going to feel until you actually find yourself in the thick of it.

So for the next few weeks, I’m in a mental holding pattern, quietly chewing on the possibilities while performing the small, redundant gestures that make up our day-to-day lives – looking at pictures of zebras with Lily (her current obsession), having a late dinner and chatting with Joe, making Lily’s lunch for tomorrow, and turning off the lights, one by one, around the house.

They say knowledge is power, but it can be pretty darn terrifying, too.

One thought on “Getting into my genes

  1. Frank Anderson says:

    I have my fingers crossed, of course, for a negative result. Like I told another friend a few weeks ago, though, I am quite confident that — barring the collapse of civilization — we will reduce many cancers to chronic but treatable conditions within twenty years. We are learning so much, so quickly now about genomic variation in humans, and genome sequencing will only get cheaper and faster over the next couple of decades. I hope this will never be an issue either way the test turns out, for either you or Lily.

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