The cloud of breast cancer has loomed over Betsy Miller Landis her entire life. In her earliest memories, she’s playing on the floor of her mother’s hospital room. Two decades later, she lost her mother to a recurrence. Then again at 54, the age when her mother died, Landis’ thoughts returned to the disease, as she worried about apparent irregularities in herself.
Landis, who is now 73, has so far never developed cancer. And this year, for the first time, on the 50th anniversary of her mother’s death, she’s actively confronting the disease. She joined an ambitious new study at the New York University School of Medicine.
“I knew it was something special,” says Landis, who as a past president of the Jewish Women’s Foundation of New York also helped approve a $35,000 grant for the study. “This was the first time I heard of a study [which also] looks at the genetics of Ashkenazic Jews who have not had breast cancer.”
The Jewish Women’s Breast and Ovarian Cancer Genetics Study, which kicked off in September, seeks to move the discussion beyond the BRCA1 and BRCA2 genetic mutations. Discovered in the 1990s, these mutations indicate a higher risk of breast or ovarian cancer and are much more prevalent in the Ashkenazi Jewish community than in the general population. The study seeks to learn more about the role that other genes play in breast and ovarian cancer.
The NYU researchers hope to learn not only about protective factors that prevent some carriers from developing cancer, but also about factors besides the BRCA1 and 2 mutations, which might account for hereditary predisposition for the disease.
A BRCA3 mutation?
“Many people have focused their careers on this and haven’t been successful,” says Dr. Harry Ostrer, professor of pediatrics, pathology and medicine, director of the Human Genetics Program at NYU, and also the primary investigator of the study. “It’s not impossible, but it doesn’t seem that likely. Probably some sort of cocktail of genetic markers will be identified.”
Ostrer envisions that his research will lead to more personalized, more sensitive risk-profiling. Currently women who learn they are carriers of a BRCA mutation may opt for aggressive measures such as a prophylactic oophorectomy (removal of ovaries) or mastectomy. In fact, though, the risks vary widely among carriers.carriers risks vary widely.
Between 36 and 85 percent of carriers will develop breast cancer over their lifetimes. Those with the BRCA1 mutation maintain a lifetime risk of 40 to 50 percent of developing ovarian cancer, while carriers of BRCA2 face a 10 to 20 percent risk of developing ovarian cancer, according to Lauren Carpiniello, a genetic counselor in the NYU Human Genetics Program, and the coordinating counselor involved in the study.
“We hope to narrow the range,” says Ostrer, who aims to determine a woman’s risk with greater specificity. If women determine that they are at only a very slim risk of developing the disease, they might opt for less aggressive preventive tactics.
The NYU study is one of several “genome-wide association” studies currently underway. Such studies look at the entire set of genes, searching for markers which seem to influence the risk of developing breast or ovarian cancer. But, says Carpiniello, “I don’t know of any other study focusing only on the Ashkenazi Jewish population. By sticking to one population, it may help the chances of identifying significant genetic markers.”
The study, which hopes to include at least 1,500 women of Ashkenazi Jewish background, aims to recruit participants of all ages, focusing especially on: women with a significant family history of breast and/or ovarian cancer; women who carry a BRCA mutation and have had breast or ovarian cancer; women who carry the mutation but have not had cancer by the age of 60; and healthy women over the age of 70. So far, 500 have signed up. But the last group, a critical one, is underrepresented.
It can be difficult to enlist women who don’t have a direct relationship to the disease, although among Ashkenazi women of a certain age, “all know people who have had breast cancer,” says Lee Furman who is 71, and joined the study in February after a seminar held at the Riverdale YM-YWHA. Furman herself never suffered through breast cancer, but she lost a mother and a sister to the disease.
Francine Brandt, who is 77, also belongs to that last critical category, the control group of women over 70 who have never had breast or ovarian cancer. At first, she wondered whether she could qualify as healthy since she’s struggled with lymphoma for almost two decades. But because she’s never had breast or ovarian cancer, she met the study’s requirements.
Brandt first encountered the study in her role on the grant’s committee of the Jewish Women’s Foundation. She says: “You do it for the good of the community. If they test me and I have the BRCA mutation but I’ve never developed cancer — that would be of interest to the researchers.”
After after listening to a seminar at the Oceanside Jewish Center on Long Island last week, Brandt joined 20 others in signing up. Brandt says that times have greatly changed since she was a child in the Bronx, when you rarely heard of younger women with breast cancer. Or maybe, she reflects, it was just a “hush-hush thing” that no one talked about. At the synagogue, she was impressed by how many women spoke frankly, pouring forth personal stories of sickness. She also enjoyed watching the roomful of people spitting to obtain saliva samples.
“It’s not so easy to fill up the tube with spit,” says Brandt. “But you really feel good after you do it. Hopefully this will make the difference.” n
How To Join The Study
It takes just a little more than a spit of saliva to participate in the Jewish Women’s Breast and Ovarian Cancer Genetics Study, which seeks to learn more about the role of genes in developing breast or ovarian cancer. If you’re not available to attend one of the following sessions, you can contact Lauren Carpiniello, a genetic counselor at NYU, at (212) 263-5528 or e-mail her at firstname.lastname@example.org. She will arrange for a 20-minute counseling session in her office, where you will fill out a questionnaire and supply the requisite saliva sample. If you are interested in setting up an additional session at a local venue, please also contact Carpiniello.
Temple Beth El
46 Locust Ave.
Phone: (516) 569-2700
Time: 7 p.m. - 9 p.m.
National Council of Jewish Women Senior Center Health Fair
241 W. 72nd St.
Phone: (212) 799-7205
Time: 10 a.m.-5 p.m.