Marcia Byalick was 38 years old when her mother died from ovarian cancer. Since then, she has lived with the fear that she and her daughters are at high risk of developing ovarian cancer. When Byalick recently learned of a new study focusing on breast and ovarian cancer among Jewish women, she was eager to participate.
“Ovarian cancer is so insidious, and there are no warning signs,” said Byalick, now 61. “If joining in this study is something I can do to possibly save my life, or one of my daughter’s, or my granddaughter’s, how could I not do it?”
Last month, about 60 women assembled at the Mid Island Y-Jewish Community Center in Plainview, to learn about the groundbreaking project and study on breast and ovarian cancer among Jewish women.
Dr. Harry Ostrer, professor of pediatrics, pathology and medicine, and director of the Human Genetics Program at New York University School of Medicine, who is the primary investigator of the study, said, “Learning that you are at high risk for breast cancer or ovarian cancer is a life-changing experience. And it should be life-changing, because many things can be done to manage that risk.”
Irene, 52, an attendee who asked that her last name not be used, had recently been diagnosed with ovarian cancer.
“I chose to participate in the study for the benefit of my children,” she said. “If there is anything that can be gained from my genes that can be helpful, I’m willing to donate my body to help others.”
The personalized medical study, expected to be conducted over several years, began in September, reaching out to the Jewish community through seminars at JCCs, synagogues, senior groups and other Jewish organizations to educate women about breast and ovarian cancer genetics, and to recruit volunteers for the project, which aims to enlist thousands of participants. Beginning in Long Island and the New York metropolitan region, the plan is to expand the project nationwide.
The three primary goals of the study are: to educate women in the Jewish community about the risk of breast and ovarian cancer and the steps that can be taken to reduce these risks; to identify modifier genes that reduce a Jewish woman’s risk for developing cancer, even if she has the BRCA 1or 2 genetic mutations; and to investigate novel genes, other than BRCA1 and BRCA2, that may also account for a hereditary predisposition to breast and ovarian cancer.
To help launch the project, the Jewish Women’s Foundation of New York provided a one-year grant of $35,000 for outreach and the recruitment of volunteers to participate in the study.
Rebecca Garrison, assistant director for the foundation, explained why.
“Breast and ovarian cancer affect our population directly and the future of young Jewish girls. We hope that our start-up money will enable this groundbreaking study to move forward and be able to help so many girls and women.”
Since it was founded in 1995, the Jewish Women’s Foundation of New York has funded innovative programs and advocacy efforts, as well as providing education on vital issues, with the goal of fostering equal opportunities for achievement for Jewish women and girls.
Other funding for the project has been provided by individual donors, as well as the Shifrin-Myer Breast Cancer Research Fund.
Participation in the project is simple. It involves completing a one-page questionnaire, supplying detailed medical histories —including results of genetic testing, pathology reports and family histories, and providing a saliva sample for DNA study.
Among the attendees at the Mid-Island Y-JCC evening, 25 chose to enroll in the study. Francine, 40, a participant who also asked that her last name not be used, came to the seminar because she has a family history of cancer.
“Anything that can help figure out the answers to this disease is important,” she said.
While participation is simple, the goals of the study are far- reaching.
Lauren Carpiniello, a genetic counselor in the NYU Human Genetics Program, and one of the study’s four core researchers, said, “This will be the first large-scale study to investigate women with BRCA1/2 mutations whose lives have been lived without having had a diagnosis of breast or ovarian cancer. It will place special emphasis on the role of Jewish women in educating their daughters and granddaughters about managing their health risks and the importance of participating in research studies.”
This is especially important because breast and ovarian cancer are significant health problems among Jewish women, affecting up to 10 percent of the population. Up to 15 percent of women who develop these diseases have a significant family history of one or more affected close relatives, suggesting genetic predisposition.
The discovery of the BRCA1 and BRCA2 genes in the 1990s highlighted a major reason for this genetic susceptibility. Among Jewish women, about one in 40 inherit a mutation in one of the BRCA genes that conveys genetic risk. Yet, many women with breast or ovarian cancer and a strong family history do not have a demonstrable mutation in BRCA 1 or 2, suggesting the possibility of other susceptibility genes. Quite remarkably, many women who inherit a mutation in one of these genes never develop cancer.
In addition to participating in the study, Jewish women will be encouraged to use the services offered by the National Ovarian Cancer Early Detection Program, which is based at the NYU Cancer Institute. These include: education about the symptoms of early breast and ovarian cancer detection and ways to reduce the risk of developing these cancers; genetic counseling and risk assessment to determine if there is a family history that suggests a genetic predisposition to breast and ovarian cancer; genetic testing for mutations in the BRCA 1 and 2 genes; testing to detect early- stage breast and ovarian cancer; and an array of treatment options and supportive services.
“This study is so important to the future of Jewish women,” said Carpiniello. “We know about the two main genes in hereditary breast and ovarian cancer which account for 85 percent of the cases. But we also know that this is not the whole story.”
For more information about the Jewish Women’s Breast & Ovarian Cancer Study, e-mail firstname.lastname@example.org or call Lauren Carpiniello at (212) 263-5528. Or go to pediatrics.med.nyu.edu/genetics.
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