BRCA was the first genetic marker identified for hereditary forms of breast cancer. Testing positive for this mutation means a 50 to 80 percent chance of getting breast cancer, and a 27 percent chance of ovarian cancer, with a little pancreatic and melanoma thrown in for good measure.
Not terrific odds. So when my doctor told me a hysterectomy, including removing the ovaries, would drastically reduce my probability of ovarian cancer and lessen the chances of a re-occurrence of my breast cancer, I was on board. She also recommended I call my family and let them know my results. With BRCA, now a known part of my family’s DNA, my siblings and children’s chances of testing positive would be 50 percent.
Those telephone calls were not easy. Some family members responded well, others not so much. A relative who survived ovarian cancer was grateful. Taking the test and learning she was positive shed new light on her health issues. My two sisters were also grateful. Especially when they found out they were negative. But a family member, one of the brightest people I know, was almost peevish telling me I was “opening a Pandora’s Box.”
The hardest part was talking to my three children. They were school age when I had breast cancer and remember those days well. We had all hoped the specter of cancer was a thing of the past.
Now in their twenties, my two sons’ first concern was for my well being. I assured them I was okay with my upcoming surgery. Then I let them know their risks. If positive, they would have an elevated probability of prostate and male breast cancer, and would be carriers if and when they had children of their own. Both boys decided to put off the test for now.
My daughter is the hero of this story. A smart cookie, she is the reason I got tested. She had encouraged me to do it 13 years ago after I completed treatment. I was still weary from chemotherapy when I told her “No. I’m done with doctors. I don’t want to think about cancer anymore.” But this past spring, for no particular reason, the timing felt right.
I marvel at the young woman my daughter has become. Married with a precocious 3-year-old and a demanding career, somehow she manages to keep all the plates spinning. But when she calls to tell me she tested positive, she is my little girl again. Sad and scared and vulnerable.
Like her father, my daughter is a scientist. She is logical. She is resilient. She lines up her doctors and listens to their recommendations. Some women in her position choose to have a preventive bilateral mastectomy. Others opt for increased surveillance. My daughter does her homework, makes an informed decision and then she moves on.
I, on the other hand, dwell in the basement. Anna Quinlan writes about “that heartrending moment when you face not your difficult challenges but those that might come to the people you love most.” To anticipate your children in distress and be unable to help is my definition of despair.
Struggling to see the light of day, I search for an old box of family photographs. I used to study these pictures looking for clues to the past. Now I examine them with an entirely different eye. I look at the faces around the table at a family wedding and wonder, “BRCA positive or not?”
I know I inherited this gene from either my mother or father. Do I blame them? Of course not. Nor does my daughter blame me. Yet, I do feel guilty and responsible for my children facing a lifetime of uncertainty with cancer lurking in the shadows.
In the middle of the night, when I am feeling damaged and distraught, I wonder if I have indeed opened a Pandora’s box. I fantasize about hopping on a time machine back to a more innocent season, before I became an expert on all things BRCA-related. But when dawn breaks and I ponder whether I would take the test again knowing what I know now, the answer is a resounding yes. I could not choose otherwise. I’m not that stupid. Knowledge is power.
BRCA is now part of my legacy. My sister tries to convince me otherwise. She tells me I am a wonderful mother, wife and friend with a quirky sense of style and that is what is important.
We don’t get to choose our cards. When I’m gone, if my children remember me as playing the hand I was dealt with dignity and grace, mine will be a life well lived.
When I tell the surgeon my daughter is positive and is opting for increased surveillance, he asks me how old she is. I answer 33. He nods his head and says, “Okay. She’ll be vigilant about her check ups. And when she turns 40, or when she is done having her family, she’ll need to consider having her ovaries removed.” Then he adds, “But that is seven years off and you have no idea what we’ll know in the future.” It was one of the nicest things anyone has ever said. He gave me hope.
Research in the field of medical genetics is growing by leaps and bounds. There are miracles around every corner. I’m not ready to cash in my chips. And with my daughter at my side, the stakes are much higher. Happily, there are plenty of hands left to play. I’m holding three aces, my daughter and two sons, backed by a strong pair, my husband and me. A full house. I’ll take my chances.
Debby Glick writes and lives in Pittsburgh.
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