Daniele Nodelman was 33, newly wed and looking forward to having children, when she got tested for the BRCA 1 and 2 gene mutations whose presence indicate a steeply increased risk of cancer. Five of her great aunts had died in their 40s or 50s from breast or ovarian cancer.
“I was more fearful of the needle than the diagnosis,” she told an audience at a seminar on genes and cancer held in Short Hills on Jan. 29. A genetics counselor told her she had tested positive, and everything changed.
“In my mind, it was not if I would get cancer, but when,” Nodelman recalled. Next year, she said, she plans to have a prophylactic hysterectomy, followed in 2016 by a double mastectomy.
Nodelman’s decision was just one of various options discussed at an event at Congregation B’nai Jeshurun focusing on the BRCA 1 and 2 gene mutation. With the mutation 10 times more common in Ashkenazi Jews than in the general population, B’nai Jeshurun’s associate rabbi, Karen Perolman, said synagogues are appropriate settings to talk about the mutations and for individuals to find support and spiritual solace.
“This is not about fear but about education,” said Perolman.
Nodelman was one of three panelists at the event, sponsored by the synagogue’s Women’s Association, in association with the Basser Research Center for BRCA at Penn Medicine’s Abramson Cancer Center in Philadelphia.
Also speaking were Basser executive director Dr. Susan Domchek, a medical oncologist, and Amanda Brandt, a social worker and genetic counselor at the center. The moderator was temple member Dr. Nancy Simkins, an internist and medical consultant for the State of New Jersey.
Nodelman, who now has two children and one on the way, cited statistics that one out of every 40 Jews carries the BRCA mutation.
She got her BRCA result in 2010. She said she still finds her six-month check-ups terrifying but is empowered by the support groups she belongs to. One of those meeting in this region is FORCE (Facing Our Risk of Cancer Empowered), which a number of audience members said they attend. One of the few men present, David Bushman, who himself has tested positive for BRCA mutations, helps run the group in Montclair.
Prophylactic breast removal, according to research cited by Domchek, radically reduces the chance of contracting breast cancer related to the BRCA genes. Research on the impact of ovarian surgery is not as conclusive. And, the physician stressed, the surgery can bring complications — including pain, changed body image, and altered sexuality. The decision is intensely personal.
“When women decide for themselves,” after considering all the available information, she said, “we have much better outcomes.”
She and Brandt repeatedly stressed the importance of gathering family history. “Don’t ever think you’re too old for this to matter for you,” Domchek said. Such information can mean early diagnosis and lives saved.
Among the 120 audience members was Emily Stein-O’Brien, a patient of Domchek’s who came from Philadelphia for the event. She was diagnosed with breast cancer in 2000, underwent repeated surgeries, chemotherapy, and radiation treatment. She tested positive for the BRCA mutations, but opted not to have her breasts removed or to have the prophylactic ovary removal. She does have regular monitoring, and so far she is doing fine.
Audience member and cancer survivor Lori Feinberg Kany of Short Hills urged people to be careful about their own Internet research. “There are great sites and some not so great sites,” she said. “But stay educated, and be your own advocate.”
She summed things up in a way that drew smiles and nods of agreement from those around her: “What we have won’t necessarily kill us, but ignoring it very well may.”