A Jewish Girl’s Guide to Genetic Testing (Part Four)
[This is the fourth in a four-part series published on Fridays.] In the six weeks I spent waiting to hear whether I tested positive for the cancer gene, I refused to think about the results. Perhaps I was just as … Read More
[This is the fourth in a four-part series published on Fridays.]
In the six weeks I spent waiting to hear whether I tested positive for the cancer gene, I refused to think about the results. Perhaps I was just as fatal about my genes as my mother. To me, getting the test was akin to having the mutation. It never occurred to me that I might test negative.
And then I thought about my mother. The reason that I was here, contemplating my mortality, was because we had made a cockamamie deal. I’d get the test if she’d go to therapy. But since she opted for cognitive-behavioral therapy, she basically got out of the arrangement with a bunch of relaxation tapes. I was such a sucker.
Joyce Seldon, my genetic counselor, greeted me with a big smile. “Great news,” she said before we even got into her office. “You tested negative.”
“You must be so relieved,” Joyce said.
“Yes,” I said. For some reason I thought about the intern. She wasn’t there. Maybe she’d moved on to a different cancer or a different part of the genome altogether. Did she stop caring whether my boyfriend and I would have children? Or if I got my breasts removed?
I wanted her to see my test through, to know that I was not another casualty of insular Jews. From the outset it bothered me that the breast cancer gene was so common in Jewish women. I have always been wary of groups, and the Jewish community is no different.
As a Turkish immigrant to Orange County, Calif., I was always the odd one out. I spent my youngest years without a single Jewish friend. When I was 8, we moved to Los Angeles, and I went to school in the very Jewish enclave of Beverly Hills. But by that time my parents, having honed their unique brand of Turkish hippie culture, abandoned any connection to Judaism.
To top it off, we weren’t rich. I didn’t feel like I had a place at any of my friends’ fancy seder tables. I didn’t know the prayers or the order of the candle-lighting, and the enormous houses with their grand dinner tables and live-in maids were intimidating. Naturally, I grew to disdain that which I felt excluded from.
So, the idea that keeping to one’s own kind could actually be a health hazard only confirmed my own contempt for organized Jewish activities. And, in a way, the founder effect suggested that my predilection for dating outside my gene pool was sound science. If my dad’s family, which is also Jewish, had a history of breast or ovarian cancer, I’d really be screwed. Maybe “the bloodless genocide”—the fear that Judaism is disappearing as intermarriage rates increase—is actually good for our genes.
Two of my Jewish girlfriends face the same frightening genetic legacy. One friend’s mother died of breast cancer in her 40s, and another’s mother survived the cancer. Getting cancer young is a hallmark of having the mutation. Is it the worst kind of irony that both of their parents were probably looking to marry Jewish “for the kids”?
Right now I’m dating a man who’s not Jewish. Since I don’t have the mutation, the odds that our children would have it are minuscule. But there are certainly other undiscovered genetic mutations we each might have whose severity is unknown. Joyce pointed this out after I asked her if she had breast cancer in her family. “No,” she said, “but we all have something.” Even so, the more diverse a couple’s background is, the less likely that they’ll have the same “something,” which means it won’t get passed on to the next generation.
Given the insularity of my own family, I am very lucky. “Your mother is going to be so happy,” Joyce said to me when she gave me the results. This probably shouldn’t have surprised me, but it did. For a long time I thought my mother liked the idea that the two of us had this horrible legacy in common. It was one thing that tied me to her, no matter how much I rebelled or how far I moved or how different I made myself.
Only after the test did I really begin to think about how difficult the decision to have children must have been for her, after enduring so much family illness. Over coffee on my mother’s 53rd birthday, I asked her, “If you had known that you had this mutation and could pass it on, would you still have decided to have me?” She hesitated. That little silence was enough.
How could you not hesitate after knowing what the odds are? When Joyce and I discussed surgery, she kept saying, “Of course after you have children.” But would I want to have a daughter so that she might have to one day decide which organs to remove? It seemed selfish.
Genetic testing has changed the process of illness. The quicker doctors can detect cancer—or the likelihood of cancer—the more efficient treatment becomes. But even knowing you have a mutation can only prepare you so much, and it does not change the outcome. Is it worth undergoing the emotional trauma of the test to be sure of your fate even if it only confirms your fears?
For my mother, that answer is easy. The test allowed her to control of her fate in a way that her mother, grandmother, and aunt could not. Knowing her genetic predisposition, she could get tested more often and with better instruments than she would have otherwise. She’s scheduled for a preventative mastectomy, which will completely eliminate her risk of BRCA1 and 2 cancers. And the best part, she tells me, is knowing that I don’t have the mutation.
Before I got the results, my mom said we’d have to thank my dad if I didn’t inherit my mother’s mutation. I told this to Joyce after she gave me the news. “No,” she said. “Thank your mother. She’s the one that gave you the good chromosome.”