Publications > Newsletter
Winter 2009
Contents
FORCE Celebrates a Decade of Service
Raychel's Story: I Will Previve
Voices of FORCE
Things I Wish My Mother Would Have Told Me
Linda Pedraza Memorial Scholarship Fund
(to search past issues of our newsletter)
Voices of FORCE
Each quarter, we’ll invite a FORCE member to share an insightful perspective, a valuable experience, or a touching story to help others who are dealing with issues of hereditary breast and ovarian cancer
The Linda Pedraza Scholarship Fund — My Saving Grace
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-toface. 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 (www.gracetalusan.com) teaches writing at Tufts University and Grub Street.
Commentary
Prevalence of BRCA Mutations Underestimated in Asian American Women
by Sue Friedman and Cara Scharf
Not all ethnic groups carry the same risks for inherited diseases. People of African American descent, for example, are at much higher risk for sickle-cell anemia, and people of Jewish background have a higher likelihood of Tay-Sachs disease. We also know that people of Eastern European Jewish descent are 10 times more likely to carry a BRCA mutation than individuals of other ethnic backgrounds. Much less is known, however, about the prevalence of BRCA mutations in other minority groups in the U.S.
Genetic testing for hereditary breast and ovarian cancer is not always a simple, straightforward test, and not everyone will benefit from genetic testing. Meeting with a genetics counselor is an important step to determine whether cancer in a family is hereditary. Counselors use preestablished computer prediction models to estimate a person’s chance of carrying a BRCA mutation and to determine who should be tested. Yet a new study published by researchers from the U.S. and Canada suggests that existing models underestimate the prevalence of BRCA mutations in Asian American women.
Details of the study
Researchers studied BRCAPRO and Myriad II, two models widely used by genetics experts to estimate the likelihood of a mutation within a group of people. Using test information from 200 Asian American women, the researchers ran both models and compared the results with a control group of 200 non-Jewish Caucasian women who had known BRCA mutations. As expected, the models accurately predicted the number of non-Jewish Caucasian women who had a BRCA mutation. But in the Asian American group, both models were well off the mark: Forty-nine Asian women tested positive for a BRCA mutation, while the BRCAPRO model predicted only 25 and the Myriad II model predicted just 26 women.
How can we interpret the findings?
Since the BRCAPRO and Myriad II models often play an important part in determining whether a person will benefit from testing or not (and may determine whether insurance will pay for testing), inaccurately predicting the number of Asian Americans with mutations may mean that testing is recommended for this community less often than it should be. This denies individuals the opportunity to obtain an accurate estimate of their genetic risk for developing breast and ovarian cancer. The study suggests that a more effective model is needed for estimating the risk for a BRCA mutation in Asian American women. In the meantime, Asian American women who believe they may be at higher risk should consult with a cancer genetics expert.
Cara resides in Philadelphia and works as an editorial intern. She plans to attend graduate school for journalism, and aspires to work one day for National Public Radio.
Reference
Kurian AW, et. al. Performance of BRCA1/2 mutation prediction models in Asian Americans. Journal of Clinical
Oncology, 2008; 26(29):4752-4758.
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