Teaneck—According to the American Cancer Society, between five and 10% of cancers may be hereditary and passed on through gene mutations. Thus, for many years, women have heard about BRCA1 or BRCA2 gene mutations, especially prevalent in Ashkenazi Jews, which can increase the risk of developing breast and ovarian cancers. Women who find out that they carry either of these mutations may choose to take action by having their breasts or ovaries removed prophylactically, thereby reducing the risk of developing breast and ovarian cancer. And studies like a recent one published in the Journal of Clinical Oncology explained that women with the BRCA1 mutation should choose to have prophylactic surgery at a younger age than women with the BRCA2 mutation. Considering the prevalence of the BRCA mutations in the Ashkenazi Jewish population (one in 40 people carry the mutation, versus one in 345 in the general public, according to the National Institutes of Health), this study carries considerable practical applications for the community at large. The first question many people have is whether they should get tested for the mutation.
Rochelle Shoretz, founder and executive director of Sharsheret, a Teaneck-based national organization that serves Jewish women facing breast and ovarian cancers, has spent the last 12 years building an environment that caters to the specific needs and sensitivities of cancer in the Jewish community. Shoretz founded Sharsheret when she was diagnosed with breast cancer at age 28 and found there to be a dearth of resources for women in the Jewish community facing breast cancer, especially for young women. As a young attorney and clerk for Supreme Court Justice Ruth Bader Ginsburg, Shoretz had many questions specific to her course of treatment as a young mother, but was unable to find the answers she was seeking since many breast cancer patients were much older.
Throughout the course of her own cancer treatment, Shoretz worked with a handful of volunteers to found the organization now known as Sharsheret. Now a two-time breast cancer survivor, Shoretz considers herself another “link” in the chain—the Sharsheret—of women and families seeking emotional support, connections and knowledge during their illness and treatment.
Many Ashkenazi Jewish women want to know their individual risk of developing breast cancer, with or without family history. But before looking into any type of genetic testing, Shoretz explained that the first step anyone should do is to have an individual risk assessment. This involves sitting down with family and discussing health history. “Pesach is a perfect time to discuss family history,” Shoretz said.
Shoretz also stressed the distinction between genetic testing and genetic counseling. She found that when people hear that they have a family history of cancer they start to get very nervous. But, she explained, just because someone in the family has had breast cancer does not necessarily mean that genetic testing is required. The first step before testing is genetic counseling. Genetic counseling delineates a road map, guiding the decisions related to what was learned about the family history. Counseling is a conversation about risk, with a clinical team who will guide the patient on how to address their risk, she added.
In order to encourage younger family members to initiate health-history conversations, Sharsheret began a campaign on Facebook and through other social media entitled, “Have the Talk,” aimed at college students. College is the first time many teens are on their own and in charge of their own medical care. Have the Talk adds another way to empower students to take charge of their health. Whatever one’s risk may be, family members must communicate in order to gain clarity for a course of action. The Have the Talk campaign has four parts: Pledging to have the talk, having the talk, taking action and staying in touch. One can pledge to Have the Talk by visiting Sharsheret’s Facebook page and signing up. Support for Have the Talk on some Northern New Jersey campuses has come from the Jewish Federation of New Jersey (JFNNJ).
Teaching open communication about health at a young age makes the topic of cancer and overall family health much more approachable. One or two generations ago, cancer was barely discussed. Grandparents who had cancer would not even mention the illness by name. “Sharsheret is opening up barriers in the Jewish community removing the stigma previously associated with cancers,” said Shoretz. Though stigma is still an issue within the community, many improvements have been seen during the 12 years of Sharsheret’s existence.
“We are dealing with a much more educated population of caregivers,” Shoretz said. “They have more questions, and want to be directly involved in the programs we run and the treatments their family member receives.”
In fact, Sharsheret’s office has expanded as a direct result of the need for an organization to tackle the issue of cancer in the Jewish community. When Sharsheret first opened its doors— and phone lines—to the community, its office was staffed by a handful of volunteers. Now Sharsheret’s staff of 17, including those in a new office in South Florida, fields between 350 to 400 calls each month.
Sharsheret’s reach runs the gamut of religious affiliation and age groups. “The BRCA community and cancer-survivor community can be an isolating experience. People crave some kind of community, especially during such an emotional ordeal,” Shoretz said. Patients and survivors often connect with each other through the Sharsheret community.
Sharsheret has also gained government recognition, with a seat on the Federal Advisory Committee on Breast Cancer in Young Women and a research project in association with the Federal Centers for Disease Control and Prevention.
Join Sharsheret at its 12th Anniversary Benefit at the Glenpointe, on Sunday May 4, 2014, at 10:30 a.m. To learn more about Sharsheret and its programs, or for any questions about breast and ovarian cancer, visit at www.sharsheret.org. For downloadable materials to aid in the family-history conversation, including a chart to help track family history, visit www.sharsheret.org/campus/have-the-talk.
By Jenny Gans