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

I was at a weak point when it all went down. I’d just had a cyst removed from my nether regions, and I was convalescing in her giant bathtub. I was grateful to her for wrangling an appointment with her extraordinarily busy doctor, for taking care of me long past the age when I should be taking care of myself. I felt very lucky to have a mother just then, so I wanted to repay her. With one string attached.

The deal made sense at the time. She had the same negative feelings about therapy as I did about the gene test. It would be an equal lose-lose situation. But she agreed so quickly that I immediately knew I’d gotten Breast Interests: Women who test positive should get yearly mammograms once they turn 30the short end of the stick.

“But you have to pay for the test,” I said.

“Of course,” she answered.

Rats.

Before the test, I hadn’t thought about how the results would affect my life. If I had, I might never have taken it. For all the advances in genetic testing, there are still only a few unpleasant options for women who find out they have the mutation. Doctors recommend yearly mammograms starting at 30 instead of 40, MRIs after 40, and annual ovarian sonograms. I could handle the tests, I thought, except that the tests existed only to catch the inevitable cancer. Fuck.

I postponed my appointment at the UCLA Familial Cancer Registry twice before I finally arrived at the office, late. My mother talked about Joyce constantly, almost as often as she talked about cancer, so I expected her to be heinous. But she was young, blond, and actually kind of cute. Already my cancer worldview was coming loose.

It was clear Joyce and her equally attractive intern knew more about me than any medical professional I had ever encountered. Joyce spread out a large family tree in front of me. Each person’s name was in a box. A dot marked the box if he or she had been diagnosed with a cancer caused by the BRCA1 mutation. The box was black if he or she died from it.

My mother’s name had a note under it: Mutation Detected. Soli’s name was white against the black, as was Sibelle’s. I had never seen their names in print before or heard anyone other than my mother speak of them. It was strange, like hearing someone else speak a secret language that only my mother used. My name was in a blank box at the bottom of the chart.

Tree of Life: Tracing the mutation through generations“What have you been thinking about the test?” Joyce asked me. Honestly, I had been too preoccupied to give it much thought: I was starting a new job, and I had recently moved back to Los Angeles from New York. I thought about the test only when I was thinking I didn’t have time for the appointment.

“How serious is your relationship?” she asked after finding out I had a boyfriend.

“Well, pretty serious I guess,” I said, relieved I wasn’t single at this moment. I may die from cancer but at least some man out there would miss me. My boyfriend had jokingly called me his dying wife once when I allowed a rare moment to talk about the test. I liked the dark humor of it, and started referring to myself as his dying wife on a regular basis. He stopped being amused.

“Do you know if you want children?” she asked. The intern stared at me silently.

Children! “I don’t know. I think so, I mean, I don’t know.”

“You’re only 29, of course,” Joyce continued, “but if you test positive, you might want to think about having children in the next few years, if you want them. There’s prophylactic ­— preventative — surgery to consider later.”

Up until that moment, I thought my mother was nuts for having a prophylactic­ hysterectomy so many years ago. But here was a woman in a white lab coat with several letters after her name telling me I should start thinking about getting my organs removed. I might want to consider an oopherecotmy — getting my ovaries taken out — she said, but not until later, after I had children if I wanted them. Many women, she added, decide on a prophylactic mastectomy.

Tough Choices: Losing a breast is probably better than facing cancerJoyce later told me that those who opt for surgery right away usually have watched someone they love go through cancer. For someone like my mother, it’s easy to choose between facing a cancer diagnosis — the fear, the chemotherapy, the radiation — and having her breasts or ovaries removed. In my mom’s mind, her hysterectomy has already given her five or 10 years that the cancer would have taken away.

I can’t grasp her death like that. My mom is one of the healthiest 53-year-olds I’ve ever seen. She kick-boxes three times a week, she tries to beat me when we go running, and she’s always trying to get me to arm wrestle. But of course, if the science tells us anything, it’s that cancer isn’t like that. Health, in the long run, may matter less than genetics.

To explain, Joyce showed me a chart with four stages of gene mutations on it. The last one was cancer. “If you have the mutation, you’re here,” she pointed to the first cancer blob, which was significantly less lumpy than the last, final, hideous cancer blob.

No crying, I told myself. I looked around to see if there were tissues, not because I wanted one, but to establish if tears were expected in this room. No tissues. Okay, no crying. “But you don’t have to think too seriously about this until you get the results,” Joyce said calmly. I could not believe this was her job. She was like the cancer god. Or since she was so cute, more like the cancer fairy. Who in the world wants to be a cancer fairy?

Before the test I took an inane questionnaire about my stress levels during the gene-testing process. I marked on a scale of 1 to 10 the accuracy of statements like, “The process has altered my appetite.” There was no box that read, “If you have repressed all emotions relating to this test, skip to the last page.” Joyce took me to a room to get my blood drawn. The nurse inserted the needle. We made small talk. She filled three test tubes with my blood and labeled them. I walked to my car, opened the door, and burst into tears. Within six weeks I’d know my fate.

Next: Why the "bloodless genocide" isn’t so bad after all.

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For more information, check out Jewcy's ever-evolving genetic testing wiki, where you can find—and post—links to resources, support groups, and more.