The Big BRCA Questions
Wed, 10/16/2013
Jewish Week Correspondent

If you were at a higher risk for cancer, would you want to know about it? How early? And what preventative measures would be worth the financial cost and emotional strain?

Those questions, and others touching on matters of life and death, were addressed late last month during a panel discussion, “Knowing Saves Lives - Inherited Breast & Ovarian Cancer: Why Jewish Families Are at Heightened Risk.” Hundreds of attendees, most (but not all) of them middle-aged or older women, sat in the ornate sanctuary of Central Synagogue in Manhattan for the event led by journalistic legend Barbara Walters.

Prior to the central part of the program, which took place on Sept. 30, the evening opened with a musical interpretation of Psalm 133, sung by operatic vocalist Allison Charney. Central Synagogue’s Senior Rabbi Peter J. Rubinstein spoke briefly about how Judaism values the body as well as the soul, and two congregants whose lives were touched by breast or ovarian cancer (or in the case of double-survivor Stacey Sager, both) recounted poignant personal anecdotes.

The closing words of Psalm 133 — “the Lord bestows his blessing, even life forevermore” — were apt ones for an evening avowing a dedication to sustaining life.

“We are singularly focused on ending this cycle of death,” said Mindy Gray, who lost her sister, Faith, to BRCA-related ovarian cancer. “If she [Faith] had been able to attend an evening like this one, she could be here today.”

Walters then led a group of four prominent doctors who work in cancer-related fields — Carmel J. Cohen, Susan Domchek, Noah D. Kauff and Julia A. Smith — in a roundtable discussion about cancer diagnosis and prevention.

As the panel explained, the mutated BRCA gene is infamously far more prevalent in Ashkenazi Jews than the general population (and also somewhat more common with Sephardim). When the gene mutates, it greatly increases a risk for both breast and ovarian cancer. But breast cancer, as a more detectable and treatable disease than ovarian cancer, has received more public media attention; Angelina Jolie’s recent New York Times Op-Ed about her decision to have a preventative mastectomy made headlines worldwide. Ovarian cancer on the other hand, the deadliest gynecological cancer, remains more frightening in its mystery.

Walters, who recently turned 84, was a spirited and engaged emcee, who was still able to prod the participatory doctors to stir up debate. (“This reminds me of my days on ‘The View,’” she even quipped as the panelists disagreed over the proper role of genetics counselors in cancer prevention). She was also personal and candid, telling the room that she had had her own ovaries removed, and lost her sister to ovarian cancer.

“Tell me why it’s not scary,” retorted Walters when Domchek assured the audience that one should not fear the results of a genetic test.

“If you know you have the mutations,” Domchek explained, “it’s more empowering than scary,” asserting that early knowledge is a crucial weapon against cancer.

Over the course of over an hour, the doctors discussed a wide range of topics, from the various merits of getting tested for genetic tendencies towards cancer (e.g. they can often be less expensive for people of Ashkenazi Jewish descent) to the stigma that may affect the Jewish community.

“People have been very afraid to talk about inherited cancers,” said Kauff.

The panel also included advice about seeking medical care, such as the fact that frightening survival statistics do not necessarily apply to elite hospitals, and tips about talking to one’s doctor about cancer.

“Prove to me I don’t have ovarian cancer,” Cohen suggested patients tell their medical professionals.

The doctors then fielded questions from the audience, from the effect of oral birth control on breast health to the potential use of genetic engineering in cancer treatment.

Although the panelists disagreed about details, such as when genetic testing becomes necessary, they all seemed confident about continuing developments in the detection and treatment of breast and ovarian cancers. Despite some of the tragic stories recounted during the discussion, the doctors emphasized the strength of self-knowledge and hope for survival, even for those who cannot prevent disease. At both the opening and closing of the forum, Walters asked the doctors, “Is ovarian cancer a death sentence?”

Both times, with no hesitation, Cohen replied, “Absolutely not.”