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How Testing Positive for the BRCA Gene Was Actually a Blessing

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Mine is one of those Jewish families riddled with​ cancer. The disease claimed my brother at 4. Each of my many aunts has had breast cancer—even the ones who married in. The total days of shiva I’ve sat, comforting my cousins, uncles, and parents, is greater than what most people spend in a lifetime at summer camp.

Cancer phobia? Another ancestral gift. In college, I would examine my breasts for lumps—sometimes hundreds of times a day. I dropped my physics course because the professor’s giddy repetition of the word “mass” made me nauseous. Yes, I hyperventilate driving past hospitals. And yes, occasionally I have bolted from the mammography room dressed in a johnny and leaving my clothes behind. Hey, I even had cancer—after the birth of my fourth child, 21 years ago. I managed the surgeries, chemo, and radiation. But when my hair grew back, so did my cancer phobia.

So what’s the last place you’d expect to find me? How about the Dana Farber Cancer Institute, chatting with a geneticist about our family’s proclivity for the big C, sitting next to the only force on earth that could keep my tuches in the chair: my 34-year old daughter Frannie, the mother of three of my grandchildren. I was being a good mom, accompanying my brave and rational first-born for genetic testing to determine if she had the broken BRCA gene, the curse of the modern Jewish woman.

“I want to be proactive,” Fran explained to me. “If I need to, I can get fake boobs and lose the ovaries.” A good friend of hers with a tough family history had just opted for prophylactic mastectomy and oophorectomy. Fran showed me six beaming Jewish faces on her phone—a photo of Rachel, Sam, and their kids on Facebook. “She plans on being around to raise her them.”

The Xanax had kicked in and I was breathing more evenly, but I was still ready to bolt. Only the face of my beautiful Frannie kept me focused as I helped her respond to the doctor’s questions. We attached names and diagnoses to our family’s calamitous medical history. “Breast, pancreatic, colon, breast, ovarian, kidney, breast”—a parade of catastrophic events.

When the doctor finished recording, she held up my blighted family tree​, a blackened quadrant for each cancer, with so many blackened circles it took my breath away. She pointed with her pencil, “Oh, we’re gonna get a hit on this one,” I heard her say.

According to Frannie, I was hallucinating. “She said no such thing,” my daughter reassured me.

Either way, it was decided that I—not Frannie—should be the one tested. My husband had been tested a few years ago because his niece, who had the BRCA mutation, requested it. He was found negative for the mutation. So, if I had tested negative, my children would automatically be BRCA mutation free and no further testing would need to be done. A needle went into my arm and they took a small tube of blood.  In two weeks, I would have an answer to a question I never wanted to ask.

Actually, I lost weight over those two weeks without even trying—a sign of cancer? I slept fitfully and worked only sporadically. Each time the phone rang, I trembled.

​Then o​ne day, the ​Dana Farber found me. “As you might have suspected,” the doctor began, “You tested positive for the BRCA mutation. You have the mutation on BRCA 1, the most common mutation among Jews. Actually this mutation is common in the Middle East and has probably been in your family for thousands of years.”

Reader, guess what happened next? Do you think I fainted dead away? That I convulsed in fear and reached for the Xanax? That’s what I would have predicted. But no. Instead,​I felt an amazing calm take hold. “Thousands of years?” I imagined the frozen tundra my bubbe had described as her shtetl, the hardscrabble lives of many foremothers cut short after the discovery of a small lump. Interminable suffering. Primitive to no medical intervention. The heart-breaking geshrei of widowers and orphans.

But that would not be my 21st century fate in the U.S. of A! The geneticist was describing how fortunate (!) we are to have this information. Nobody welcomes this news, the likelihood that you will develop cancer—again! No one wants to have a Jewish genetic disease or mutation. And yet, I thought, “aich zachiti ani?” How did I merit being in the generation when modern medicine could name and perhaps prevent me from becoming another black circle on my family tree?

As you may have deduced, I’m not a finely balanced clock. But surprisingly, this was no Xanax moment. Completely unexpectedly, I experienced, and continue to experience,​ a tranquility bordering on embrace. Perhaps there is a kind of power we derive from locating, defining, and naming our deepest fears.

“Now that we know what it is, there is a lot we can do preemptively to help you,” the doctor informed me. Not an enticing prospect, I thought, yet deeply soothing.

“And you know what cheers me?” I heard myself telling the doctor. “It’s that I have the most common Jewish mutation. Circumcision is a sign in the flesh, an inscription demanded by God as a sign of the covenant—and that’s only for men. How much cooler is it that I have the sign in my genes? I am so Jewish!”

Clearly she had never heard “cool” applied in this circumstance. The doctor laughed out loud. But I saw myself standing again at Sinai, one among this illustrious Jewish family, with its perks and privileges, its unfortunate quirks and frailties. I am a common Jew with a common Jewish ailment, BUT—aich zachinu anachnu? How did we now merit t​o live in a moment of such extraordinary medical advances, when they can read the future in our DNA and avert what was always inevitable.


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