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Tuesday, December 12, 2017

Five Sisters & the BRCA Gene

The 2017 Moment Genetics Guide

Five Sisters & the BRCA Gene

The 2017 Moment Genetics Guide
September 14, 2017 in 2017 September/October, Jewish World
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“It was good I got cancer,” says Cynthia Kimball. “I thought these kinds of things happened to other people and not to me. I thought I was invincible.” The oldest of five sisters, Cynthia, who is not Jewish, was diagnosed with breast cancer when she was 30 years old while living in Japan as a military wife in 1994. Three doctors told her a lump in her chest was “probably nothing” because she was so young. When it turned out to be something—breast cancer—Cynthia “pretty much lost it.”

She went through chemotherapy, radiation, a mastectomy and even a divorce. “You don’t want to be with someone who doesn’t want to be with you because of what you have,” she says about her previous marriage. After she was done with radiation and was healthy again, she and her family thought they were done with cancer. But it didn’t turn out that way.

Four years later, her younger sister Kristy found a lump in her breast that was cancerous. After her, it was another sister, Wendi, who discovered she had breast cancer. The family was at a loss. Two sisters with breast cancer in their 30s is unfortunate, but three sisters had to be more than mere bad luck. At that point, a doctor urged the family to get genetic testing. They discovered all five Kimball sisters share a mutation of the BRCA gene passed down through their father’s side. “It was pretty much a shock to all of us even though we knew that my Grandma Geraldine, my dad’s mom, had passed away from breast cancer,” says Cynthia. It was a one-in-a-thousand chance that all five sisters would be carriers.

With the five sisters all testing positive for the mutation, they immediately had their own support group, which brought them closer together. All of the sisters had double mastectomies and hysterectomies to reduce the risk of breast and ovarian cancer. “A lot of times doctors will ask if you would like to talk to someone else who has been through this surgery, and we already had that,” Cynthia says. The Kimballs started The Kimball Family Foundation to make sure others would have the same support and to promote research and awareness about hereditary breast and ovarian cancer. Cynthia now travels around the country speaking about preventive measures and the importance of genetic testing if you are at risk of the BRCA mutation.

Although some people view BRCA as a Jewish problem, the Kimballs know this isn’t necessarily the case. “Many people ask me if I’m Jewish, and we’ve not found that in our genealogy yet,” Cynthia says. When speaking to Jewish groups, she sees there is more awareness of BRCA. She recalls asking one group how many knew about the BRCA gene mutation, and every hand went up. “It was like everybody knew someone in their family, whether it was an immediate or a distant family member who had BRCA1 or 2 mutations. It was unbelievable for me to see that.”

She also provides support and mentorship to people who are struggling with deciding whether or not to get tested: “I met with a girl in Pennsylvania at a Starbucks whose mom had ovarian cancer. She was afraid to get tested. In her head she was saying, ‘I already have ovarian cancer, I know I’m going to have the mutation.’ I said ‘I can’t tell you to do this, but this is my story and this is what we did,” says Cynthia. “I feel like genetic testing has saved my family.’”

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