When Your Genes Determine Whether You Live or Die

When Dr. Mary-Claire King first started working on identifying a genetic cause for cancer, she needed to gather families who would let her talk to them, take their blood, and look at their tumors. She needed families where cancer rates ran high, where cancer seemed almost inevitable. She found them. Lots of them. And by concentrating on families who exhibited early onset cancer, they were finally able to pinpoint the BRCA1 gene on chromosome 17 in 1994. BRCA2 followed a year later. And four years after that, my mother found a lump in her breast for the first time. My stepfather found it while they were in the shower. She hadn’t been checking. Breast cancer did not seem, to her, like an inevitability.

It seems like all the women in my family have our potential for motherhood cut short.

But it does to me. And this is why I find myself in this room, explaining that my mother died at the age of 46, my paternal grandmother had a hysterectomy due to cancer at 45, and my great-grandmother (paternal) had a “stomach cancer,” which in those days was often a euphemism for some fucked up cells in the ovaries. She asks me about my height and weight. She asks me when I first started my period. I say 12, but I might be remembering going to mother-daughter classes, sponsored by the Girl Scouts, where we learned what a period was, what to do when you finally got yours, and the difference between a pad and a tampon. I remember waking my mother up in the middle of the night when I got mine the first time. The next day, she bought me chocolate cake at Applebee’s to celebrate.

My genetic counselor recommends that I undergo a blood test to look for possible mutations of the BRCA1 and BRCA2 genes, as well as examining 32 others so that we might get a better idea of my cancer risk, which is already heightened. A mutation in the BRCA genes can elevate cancer risk as high as 85%, up from 12% for the general population. And a computer program that runs at the end of the appointment tells me that my risk is already double the general population, even without a BRCA mutation.

I do not know if my mother’s cancer was inherited or not. After all, inherited cancers only account for about 5% to 10% of cancers and BRCA mutations are not responsible for all inherited breast cancers. But because I cannot just wake my mother up in the middle of the night and ask her if she passed this down to me, I agree to have my blood drawn and sent to a lab. I agree to wait three weeks to get my results. The counselor releases me to the phlebotomist, who quickly and efficiently draws blood from the veins on the back of my hand. Then she wraps my hand in cotton and neon green gauze, the same color as my mother’s favorite Rod Stewart T-shirt, and sends me on my way.

It strikes me here that the word “impatient” is somehow necessarily medical. In the Latin, patient means “suffering.”

In three weeks, I’ll find out my genetic status and what that means for my cancer risk. I already know that I’ll need to go to a high-risk clinic, regardless of my genetic outcome. But with this test, I’ll find out if I need to take additional measures. I’ll also find out my risk for pancreatic cancer and ovarian cancer. My research and my counselor both tell me that if I test positive, I may need to consider having an oophorectomy to remove my ovaries.

And I have cramps again. I complain to my grandmother (maternal, no history of cancer) on the phone while I drive home. It feels as if my uterus is trying to close in on itself and push itself outside my body, as if it knows its future usefulness hangs in the balance. I get nauseous. I get sad. My grandmother says she’s glad she doesn’t have to deal with a period anymore, not since she was in her forties. Not since she had three miscarriages and her doctors performed a hysterectomy due to a dropped uterus. I remember that her potential for motherhood was cut short, that we may have that in common.

My fear is not rational; it’s primal.

There’s a videotape of my mother playing with me when I was a child. We’re at my grandparents’ house and I’m running around outside, jumping at random. I remember the game I used to play, skipping from one clump of grass to the next in a made-up game of life or death. My mother is flying a kite. We share a Middle Tennessee accent. We both have strawberry blonde hair. My hair is no longer blonde; she lost hers in treatment. I lost the brunt of my accent a long time ago, too. And lately I have been wondering if I should have a baby, if I should pass my genes onto someone I can fly a kite with. But I don’t know if this is a decision that I can make until I better understand what else my mother and I might share. I understand that this decision might be made for me soon. It seems like all the women in my family have our potential for motherhood cut short.

And I wonder if I should even write that. It feels like it could be a jinx, or like I could be drawing that reality into being by giving it breath and naming the fear in 12-point font. After all, it’s statistically likely that I’ll test negative. Though I still have a heightened risk, there’s still a three-in-four chance that I will live a cancer-free life. But I find that I can take little comfort in statistics. My fear is not rational—it’s primal. It makes my heart beat faster, like I’m being chased by a lion on the prairie. It’s the kind of fear that wakes you up in the middle of the night when you’re a child. It’s the kind of fear that makes you want to knock on the door to your mom’s room and snuggle in for the rest of the night, her certainty of the world protecting you. The hardest part is not knowing whether or not everything is going to be okay. But it is also knowing that you can’t turn to your mom, who will tell you that it will be.

Then I remember that my genetic history is not written from only one source. I still have my grandmother, who takes me bra shopping once every six months or so. In exchange, I help her fasten her bra, to help her find support for her (still intact) breasts while still showing minimal wrinkled cleavage. I still have my grandfather, at least for now. I still have my father and his family and they are less genetically problematic, according to my counselor.

How do you teach yourself to hope?

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Thanks for sharing this, you are awesome !

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