“I can tell my children that they don’t need to fear they will lose me to breast cancer,” said actress Angelina Jolie last May when she announced that she underwent a preventive double mastectomy. Describing her pervasive family history of breast and ovarian cancer in a New York Times op-ed, Jolie said that she had inherited a faulty BRCA1 gene, which significantly increased her cancer risk.
A month later, the U.S. Supreme Court ruled against gene patenting, effectively breaking the monopoly one laboratory, Myriad Genetics, held on testing for genetic mutations in two genes, BRCA1 and BRCA2. These events have had far-reaching and troubling implications, say experts in the field. While the interest level in learning about hereditary cancer has increased, there is still a lot of ignorance and confusion about risk factors, which could potentially lead women to undergo unnecessary surgery.
Angelina Jolie’s op-ed and the Supreme Court decision have led more people to seek information about their genetic risk factors. At the New Jersey-based organization Sharsheret, which provides support to Jewish women contending with breast cancer, the call volume has doubled in the past year, observed executive director Rochelle Shoretz. “There’s lots of discussion about BRCA,” said Shoretz, who was, however, quick to caution that the op-ed and the Myriad decision were “wonderful starting points” at best. She added that there is much work yet to be done in the Jewish community to raise awareness for the increased risk of gene mutation among Ashkenazi Jews, and to encourage families to confront and discuss the issue.
“For Angelina to say, I was tested, I’ve had mastectomies, I’ve had reconstruction — she softened those words and took some of the stigma away. That was huge,” said Sue Friedman, executive director of the national advocacy group Facing Our Risk of Cancer Empowered.
Rachel Secemski is the type of person to whom Sharsheret regularly directs its efforts. A young mother of two and physical therapist living in New Jersey, Secemski’s father was diagnosed three years ago with breast cancer at age 52. He tested positive for a mutation in the BARD1 gene, which researchers know very little about and are investigating for its role in increasing breast cancer risk.
“He had a mastectomy, chemotherapy and radiation and is thank God in remission,” said Secemski, an Orthodox Ashkenazi Jew whose father’s three older brothers, as well as her grandfather, had prostate cancer. Recently, Secemski’s first cousin on her father’s side was diagnosed with breast cancer at age 41. That overwhelming history of familial disease led Secemski to visit Sharsheret for support services and to seek genetic counseling. Secemski hasn’t yet received genetic testing as she is awaiting the results of other family members. If they test positive for the mutation, her health insurance will cover the cost for her to be tested.
“I certainly want to be proactive because I have children. If something is going to happen I want to catch it early,” said Secemski, who, while impressed by Jolie’s admissions about her surgery, noted that it didn’t help her assess her own situation. “Ultimately, I have to be the one to ask myself, do I need to do this?”