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A Jewish Girl’s Guide to Genetic Testing (Part One)

[This is the first in a four-part series published on Fridays.]

Later this month, my mother is going to have her breasts removed—not because she has cancer, but because she’s quite sure she’ll get it. It’s not the first time she’s had body parts removed. In fact, I’d had my mother pegged as straight-up insane since I was 12, when she underwent a total hysterectomy at age 35. It took me years to realize she’s not crazy. Or at least not that crazy. Finally, last year, we made The Deal: I told her I would get tested for the breast cancer gene if she would go into therapy.

When my mother first told me about the “cancer gene,” maybe five years ago, I didn’t believe her. I remember sitting on the phone with her in my Brooklyn kitchen, rolling my eyes, and probably smoking a cigarette. I’d been on the receiving end of too many articles about cancer prevention to take this to heart. But it turned out my mother wasn’t lying that day. And it also turned out that the feeling she had of being cursed, the feeling that made me think she was insane for so long, was right. Cancer is in her genes.

Today scientists have isolated mutations on several breast and ovarian cancer-causing genes, with more being discovered regularly. It’s now possible to get a test for the “breast cancer gene,” or mutations in BRCA1 and BRCA2, named, creatively enough, after Breast Cancer 1 and 2. If a woman has this mutation, the probability she’ll develop ovarian or breast cancer skyrockets. The statistics vary, but if you have the gene you are far more likely to get cancer than to live a long life without it.

Part of me thinks it was better when we thought cancer was arbitrary. Sure, spending your life in a coal mine or smoking cigarettes was bound to make a person sick, but otherwise it was random and illogical—or at least unknowable. Like getting hit by a bus. But as genetics advances, it’s likely that we will soon know about lots of illnesses to which we’re predisposed. The medicine won’t necessarily keep up, though. And the thing with ovarian cancer is that by the time it’s detected—because ovaries are so small—it’s almost always too late. In any case, a predisposition is not a diagnosis. What’s so great about knowing? So that you can strategically plan when to have kids? And then plan which organs to remove when?

Well before the human genome was decoded, my mother was convinced that it was only a matter of time before she got ovarian cancer and died. When she was 18, her mother, her grandmother and her aunt all died of ovarian cancer within three years. Ever since, she was absolutely sure that, like them, she would end up in a hospital, tubes coming out every which way, nauseated from chemotherapy.

I should have been more understanding, but I wasn’t. As a kid, I could only go on what I saw, and what I saw was a woman who spent a fair amount of time quite unhinged. Even before the surgery, my mother had a short fuse. She would routinely work herself into a rage over what seemed petty infractions: lost clothes, spilled drinks, a messy room. And “rage” is putting it lightly. She would get so angry, yell so much, that she’d nearly throw up and have to lie down. This was the paradox of my mother. Did she get so worked up that she made herself sick? Or was she sick to begin with and became angry because she couldn’t do anything about it? After the surgery, it only became worse. A couple of years ago, she managed to divert a plane full of people from New York to Las Vegas instead of Los Angeles when she had a panic attack during the flight.

I found her hypo-hypochondria both endlessly irritating and amusing. But it was only as I got older and began to pick apart my own childhood, that I started giving hers some attention. How could anyone watch three of the women they love most die of the same disease over the space of three years and not come out crazy?

When she found out that the test was available, my mother jumped at the chance. If she tested positive, the numbers were terrifying. Women in the general population have a 13.2 percent chance of getting breast cancer. For a woman with the mutation, it’s between 36 and 85 percent. For ovarian cancer the odds jump from 1.7 percent to between 16 and 60 percent.

These statistics are also confusing. A 16 percent chance of developing ovarian cancer is entirely different from a 60 percent chance. “It depends on which study you’re looking at,” says Joyce Seldon, my mother’s genetic counselor, but she stressed that, 60 percent is more accurate. For developing breast cancer, the range—between 36 percent and 85 percent—is even more misleading, Seldon says—“More likely than not, you’re gonna get cancer.”

And in this case, getting cancer doesn’t mean becoming sick at 65. Women who have the mutation are afflicted at a much younger age. They’re the ones whose stories are so hard to believe: the woman diagnosed with ovarian cancer at 45 who dies six months later. The woman who has several rounds of chemo and a mastectomy after a breast cancer diagnosis at 41. The woman who doesn’t get to see her kids grow up.

My mom’s test results? Positive. She had a mutation on BRCA1. Even though I refused to take any of her cancer talk seriously, I knew this wasn’t good news. Still, I couldn’t help thinking that at least she didn’t remove her uterus for nothing. I didn’t really understand the magnitude of this news. Because she had the mutation, there was a 50 percent chance I had it, too. Did I really want to find out? Next: What would you do if cancer killed off all of your female relatives?

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Want more information? Have more information you want to share with the Jewcy world? Come on over to Jewcy’s genetic testing wiki to see a list of pertinent links, and add your own.

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