WASHINGTON — Two messed-up genes can sharply raise a woman’s chances of getting breast or ovarian cancer. That’s scary for anyone — but especially for one group of women in particular.
When the BRCA1 and BRCA2 genes mutate in a certain way, the body’s ability to fight off these cancers is severely compromised. There are three mutations in all that can create trouble, and they are found most commonly in Jewish women of eastern European descent.
They include Ali Weinberg, now a digital reporter in D.C. for ABC News. She inherited the BRCA gene mutation from her father, and had a double preventive mastectomy at the age of 21.
“I was able to reduce my risk,” she says, adding, “I feel great and I am never going to have to worry about getting breast cancer.”
And while she said she would not hesitate to make the same choice, she knows it may not be the right path for everyone.
On a recent Sunday morning at the D.C. Jewish Community Center, a meeting room was filled with women — many from the Jewish service organization Hadassah — wondering whether the same mutations might be hiding in their DNA.
They took notes as Weinberg related her story, and peppered local experts in hereditary cancers with questions.
Dr. Claudine Isaacs, co-director of the breast cancer program at the Lombardi Comprehensive Cancer Center at Georgetown University, says these mutations can occur in women from all ethnic groups, although they are far more common in the Ashkenazi Jewish community.
“In the general U.S. population, about one in 400 individuals will carry the mutation, whereas in the Ashkenazi Jewish population it is one in 40,” she says.
Isaacs says it is important for every woman to be aware of her family history. And for Ashkenazi Jewish women, it is crucial to be aware of cancer on both sides of the family tree, because a father can also be an unknowing carrier and pass on the BRCA1 and BRCA2 mutations to his children.
Ali Weinberg inherited the mutation from her dad, as did hereditary cancer activist Francine Raizes, a leading member of FORCE — Facing Our Risk of Cancer Empowered.
“We weren’t one of those families where you saw it all over the place and it kind of raised a red flag,” Raizes says.
Her father had only brothers and they had only sons.
“There weren’t a lot of females, and like most Jewish families, we lost people to the Holocaust,” she says, making tracing the family line more difficult.
But her father had prostate cancer, and an uncle died of prostate cancer. When her sister developed the breast cancer that eventually killed her, Raizes got genetic testing.
She tested positive and immediately scheduled surgery to have her ovaries and fallopian tubes removed. It was only then that doctors discovered she already had stage two ovarian cancer.
Now she is pushing for other women to educate themselves about hereditary cancers, and working to make genetic testing more widely available.
Raizes says she would love to see a day when any woman of Ashkenazi descent could go in and have her insurance cover testing and genetic counseling.
“Under the current guidelines, my sister didn’t have the right to have insurance coverage to be tested because there was no other breast cancer in the family,” recalls Raizes.
Judith Macon, manager of cancer outreach and education at Suburban Hospital, counseled Raizes through her testing, treatment and recovery.
She says there has been a big uptick in genetic testing for BRCA1 and BRCA2 mutations in recent years — spurred on a bit by Angelina Jolie’s announcement in May 2013 that she had a preventive double mastectomy.
“I think it is being talked about more,” Macon says, looking across the room at Raizes, her former patient.
Raizes says that after a 35-year business career, she is now in the business of saving lives. Macon refuses to call her a fighter or survivor, focusing instead on Raizes’ mission.
“I see her as a role model and an educator,” says Macon. “And I see her as an empowered woman.”