If there was a bingo board listing sensitive issues in the Jewish community today, the conversation about BRCA mutations would hit every box: Ancestry. Fertility. Modesty. Marriageability. Mental Health. Privilege. Secrecy. Intermarriage. Family Planning. Sexuality. Family Dynamics. Mikvah. Stigma.
These issues floated through my mind when I attended a recent panel on this topic, entitled “Knowledge is Power: Understanding and Managing BRCA-Related Cancer Risk.” The event was hosted by the 92nd Street Y, in conjunction with UJA-Federation of New York and the Basser Center for BRCA at Penn Medicine.
Panelists included Dr. Susan Domchek, Dr. Mark Robson, Dr. Nicole Schreiber-Agus and Elizabeth Wurtzel. Joan Lunden, former anchor of “Good Morning America” and a breast cancer survivor, was a master moderator for a highly scientific discussion with deeply emotional subtext.
When it comes to DNA, we all have BRCA1 and BRCA2 genes. Some of us have mutations on these genes which can translate into greater risk of breast and ovarian cancers. For those who test positive for BRCA1 and/or BRCA2 mutations, there is a range of recommended treatments, including close monitoring, medications, and in some cases, prophylactic mastectomy and oophorectomy.
In the general population, the chance of testing positive for BRCA1 or BRCA2 mutations is 1 in 400. For Ashkenazi Jewish women and men, it’s 1 in 40. The prevalence of BRCA mutations in Ashkenazi Jews is an example of what’s called a “founder mutation”. Founder mutations develop when a small ancestral group experiences a decrease in population, isolation, or migration– major themes in Jewish history throughout the millennia.
Dr. Domchek, executive director at Basser Center for BRCA at Penn Medicine, gave an example that illustrates how the BRCA discussion touches on genetics and Jewish history. Interestingly, one area where there is a surprisingly higher rate of positive markers for the Jewish BRCA genetic mutations is Mexico. One theory suggests that after the Spanish Inquisition, there were Jews who immigrated to Mexico and began living as Catholics. Despite centuries passing and the genetic influence of assimilation, the genetic mutations continued to be inherited.
As of now, most who get BRCA tested either have cancer or a family history of cancer, but experts recommend testing beyond that criteria. Dr. Schreiber-Agus, a genetics expert, and chair of UJA’s Fertility Journeys task force, recommended that all Ashkenazi women and men get tested regardless of what they see in their family tree.
BRCA testing is sometimes covered by insurance, sometimes not. But the obstacles to getting tested are not just financial or logistical. According to a study cited by Dr. Domchek, many do not get tested because they are not aware of what’s available or because they do not want to know the result.
True, knowledge is power, and power means choice. But choice can feel heavy.
For some, hearing a positive test result for BRCA gene mutations may bring overwhelming thoughts and feelings. There’s the medical jargon, the numbers, and percentages, the timelines. There may be fear, shock, sadness, anger, confusion and loneliness. But for some, there may be a sense of relief upon knowing their status and then being able to decide how to manage it best. Like many experiences in life, reactions vary but all are valid.
Elizabeth Wurtzel, an author and breast cancer advocate, shared with the panel, her perspective on getting breast cancer and finding out she is BRCA1 positive. After coping with other challenges in her life, including mental illness and drug addiction, her new diagnosis made her ask: “Seriously God?? Now this??” With time, she found a way embrace the journey. Wurtzel has used her platform as a writer to publicize BRCA mutations, the ability to get tested and the blessing of having preventative options.
Fortunately, there is wonderful support today for navigating BRCA-related decisions. Dr. Robson, an expert at Memorial Sloan Kettering, emphasized the importance of utilizing a genetic counselor throughout the process and not trying to go at this alone. Sharsheret, a robust organization for Jewish women facing breast cancer, was born after its founder, Rochelle Shoretz A”H, had breast cancer and decided it was time to build a sisterhood to empower and inform.
In 2013, Angelina Jolie wrote a poignant piece in the New York Times about her positive BRCA1 status and decision to get a preventative double mastectomy. In her case, it appeared to be the best treatment option. According to a study by Harvard Medical School researchers, in the three weeks following Jolie’s article, rates of BRCA testing increased by 64 percent. Six months later, average monthly testing rates were still 37 percent higher than in the four months before the article’s publication.
Clearly, awareness matters. A lot.
At the panel event, the room was packed to capacity. Still, as one panelist noted, there are thousands of people who need to hear about BRCA mutations but do not have the resources or information.
That’s why The Layers Project Magazine is starting the conversation. We tackle this emotionally fraught topic, knowing that, like many issues, it’s not black-and-white. What makes sense for one person may not make sense for someone else. We explore BRCA genetic mutations not just for what it means for us physically, but for what it means for our emotional well-being, sense of community, life satisfaction, and our futures.