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May 22, 2013 By:
Angelina and Me — and Maybe You: Choose Life!
Since my role models tend to fall more into the camp of famed British writer Virginia Woolf, I was startled last week to find myself moved by the experience of Angelina Jolie.
That’s because Jolie and I actually have something in common: We both lost our mothers to cancer associated with the BRCA genetic mutation. We also both made the decision to drastically eliminate our own high risks by acceding to surgical removal of our breast and ovarian tissue.
We also share the fact that neither Jolie nor I have the kind of strong family history of illness that is often associated with BRCA. Neither of us comes from a family haunted by mothers, daughters, aunts and cousins lost to breast or ovarian cancer Each of us lost “only” one close relative to these dread diseases.
My own odyssey began when my mother was diagnosed with ovarian cancer in 1998. At that point, the focus was on saving her, and thanks to the aggressive treatment she received at the Hospital of the University of Pennsylvania, her cancer went into remission, and she enjoyed 10 more years of life.
But when my mother died, I started thinking. Because of the absence of a strong family history, no one urged me toward genetic testing. In fact, both my internist and my gynecologist assured me that there was no real need to follow up the death of a single relative with testing.
But I decided to be proactive: Since my mother had ovarian cancer and since I am an Ashkenazi Jew, I would eliminate all possibilities, both for myself and for my children. My decision was validated when I called to arrange an appointment with a geneticist. At the top of the list that the scheduler read for risk factors: Ashkenazi Jew. That, coupled with the single case of my mother’s ovarian cancer, was enough to get me in the door, and to convince my insurance carrier to cover the screening.
During the initial meeting, the genetics counselor helped me map out my genetic family tree, which was reassuringly cancer-free. It was worthwhile to test me, but still just a formality, something to check off the list. There seemed to be no cause for alarm.
Until my return visit. Suddenly, we were in crisis mode. I sat in the small examining room looking at the stunned faces of the physician, the counselor and the trainee.
The unexpected had happened; my Jewish hyper-vigilance was validated. I was a carrier of the BRCA 2 gene mutation. My children might be carriers as well, but that’s their story to tell. I had a slightly elevated chance of developing pancreatic cancer. My lifetime chances of developing breast cancer: 86 percent.
As for ovarian cancer, when I proposed delaying the procedure to remove my ovaries, the doctor stared at me and said: “You are a walking time bomb.” So much for deliberation and control.
Yet, ultimately, it was all about control. I found a nice Jewish surgeon who removed my ovaries, just a few days before Christmas, when the non-Jewish, non-BRCA world was otherwise engaged.
The decision to proceed to the next stage, a double mastectomy, was more complicated. Even though I could have chosen to be closely monitored for breast cancer, I, like Jolie, didn’t want to burden my family with a potential tragedy. I had a double mastectomy the following summer, and have returned to my life, healthier and wiser than I was pre-diagnosis. I deal with the elevated possibility of pancreatic cancer by scheduling an annual endoscopy to catch any disease before it becomes symptomatic and virulent.
It’s now been more than four years since my life took a turn toward uncharted territory. And yet, like my inexorably positive mother, I feel lucky. I feel that I am in control of my choices, and that I’ve given myself the best chance to live a full, healthy life — and to continue noodging my three children as long as possible, without being an actual burden. My mother would have been thrilled to know that her illness was the catalyst to push me, my extended family — and I hope others who read this — along the path toward life.
If you are Ashkenazi and “only” a single relative in your family has had one of the cancers associated with BRCA, consider meeting with a genetic counselor about testing for the mutation, which can also be transmitted along the male line. Don’t assume that you are safe; take care of yourself. As Moses commands us: “Choose life! So that you and your descendents may live” (Deuteronomy 30:19).
Ruth Bienstock Anolik, who lives in Penn Valley, teaches literature at Villanova and Temple universities.