Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Grace Talusan
This story is for Linda.
I was 33, unmarried, and childless when I was tested for the BRCA mutation.
My appointment to hear my results was at Massachusetts General Hospital, in the same medical complex where my sister Mary was recovering from bilateral mastectomy. At 36, she was diagnosed with breast cancer. Because Mary was positive for the BRCA mutation, I didn’t have to think too hard about being tested. I wanted to know if I too carried a BRCA mutation.
Driving to my appointment, I convinced myself the test would be negative. My family had experienced enough bad luck with cancer: my two-year-old niece had battled a rare eye cancer, my aunts had died of breast and ovarian cancers, and my sister and first cousins were being treated for breast cancer. It would only be cosmic fairness for me to test negative. Wishful thinking.
I looked forward to my meeting with my genetic counselor. Like me, she was Asian American. At our first meeting, when she laid out the choices—to test or not to test—I felt very comfortable with her, as if I was speaking to a cousin or a sister. I enjoyed this woman’s company until I heard her say, “You’re positive for the gene mutation.” I burst into tears. “You didn’t expect to be positive,” she said. I shook my head. She handed me a FORCE brochure. I left my first message on the FORCE message boards that night and within hours, felt held by the warm hands of our community.
A few months later, my physician explained what I could do with this predictive knowledge. I was impressed with diagnostic technology, MRIs and digital mammograms. If I had cancer, we would find it early. Surveillance might detect cancer, my doctor advised, but wouldn’t prevent it. “I’m comfortable with that,” I said. All the while, my FORCE friends were there for every question and concern. I didn’t sense any criticism or judgment for choosing surveillance. Although I’d seen the effects of cancer up close, I wasn’t fully convinced of its power. Mary spent the first year of her son’s life prone on a couch, flattened by chemotherapy. She left his first birthday party in an ambulance, and she was in the hospital while I watched him take his first steps. My cousin was pregnant when she was diagnosed with breast cancer, which has since spread to her brain. None of this was enough to convince me to do anything but surveillance.
Then I met Linda Pedraza.
I was awarded a scholarship in Linda’s honor, which funded my attendance to the FORCE national conference. During that weekend in May, I met my message board friends face to face. I attended presentations by top researchers on all aspects of hereditary breast and ovarian cancer.
As a woman of color living in the U.S., whenever I walk into a room, I scan to see if anyone looks like me. I noticed a few women of color at the conference and wished that more were in attendance. Recently, when I learned about research suggesting that the frequency of breast cancer gene mutations in Asian American women is underpredicted, I wondered if there was a connection. Maybe more women of color weren’t at the conference because they hadn’t been tested.
And then, I watched In the Family, a documentary by Joanna Rudnick. And that’s when Linda spoke to me. The film includes an interview with Linda at age 42, when she was diagnosed with ovarian cancer and says, “I’m living proof that the technology doesn’t always catch things.”
Living proof. And then I realized: Linda isn’t living anymore.
Like me, Pedraza chose close surveillance. She was being treated for ovarian cancer and doing the recommended surveillance for her breasts every six months. One screening she was fine, and by the next, she was diagnosed with Stage III breast cancer, which ultimately caused her death. Despite all evidence and research that points to surgery as my best option, nothing got through to me until I watched Rudnick’s film. Pedraza says, “Being alive is what matters. And in retrospect, if I could have turned the clock back, I would’ve had all those surgeries. It may not be the ideal life, but it is life. You don’t mess with that.”
Last December, both my breasts were removed. In the next few years, before I turn 40, my ovaries will also be taken. My beloved body parts may be gone, but I will still be here.
Grace Talusan teaches writing at Tufts University and Grub Street.
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