Daily calls to Georgetown Lombardi Comprehensive Cancer Center from women seeking genetic testing in the weeks after Jolie’s op-ed went from five to 13, said Beth Peshkin, professor of oncology and the senior genetic counselor there.
Despite fears that Jolie’s revelation would cause women who didn’t really need testing to demand it, the inquiries were instead largely from “people with a family history who were putting off testing,” Peshkin said. (One in about 400 women in the general population carry mutations to BRCA1 or to a related gene, BRCA2, according to Otis Brawley, chief medical officer for the American Cancer Society.)
Meanwhile, a month after Jolie’s announcement, the Supreme Court unanimously ruled that the patents by the company Myriad Genetics on the BRCA1 and BRCA2 genes were invalid, meaning “more women (and men) will have access to potentially life-saving genetic information, because competition has lowered the cost of these genetic tests,” said Lisa Schlager, of Facing Our Risk of Cancer Empowered (FORCE), a national nonprofit group for people affected by hereditary breast and ovarian cancer.
“This summer has been one landmark period for us,” she said.
A connection over loss
The previvor crowd gathers for a happy hour just after 6 p.m. with the June sun still bright. Rotating around the table, each woman shares her experience.
But at nearly 9 p.m., they haven’t even made it halfway. It’s hard to limit stories that summarize generations of cancer history and agonizing decisions regarding surgeries. And the introductions become a chance for the women to share the names of doctors and tips for how to handle things they hope most women never have to know about, like hot flashes at 32 after you have your ovaries removed.
To most of the women in this group, a double mastectomy doesn’t seem radical or barbaric. Like Jolie, many here have watched their mothers or sisters, aunts or grandmothers suffer through years of chemotherapy and surgeries, only to ultimately die. They point out that Jolie’s aunt, Debbie Martin, 61, died of breast cancer, just two weeks after Jolie’s announcement.
Nicole Randall, 34, tells the women that she has vivid memories of her mother getting a “disfiguring mastectomy” in 1988. Randall was 8.
“Back then, you could see the staples in her chest. She had to wear a squishy prosthesis,” Randall said. She was an active mom who coached softball and swam with her.
“I will always remember how she would take out her prosthesis for the pool,” she said.
Just four years later, after helping her mother through her mastectomy, two rounds of chemotherapy and radiation that left her bald and with burns on her body, her mother Jeanne, died. Nicole was 12.