BRCA 'Jewish' Cancer Gene Mutations Often Go Untested — At Deadly Cost

One Woman's Survival Fight Doomed by Lack of Testing

At Supreme Court: Lisa Schlager and daughter Rachel protest Myriad Genetics’ claim to a patent on the BRCA gene, which they say raised the cost of testing.
Courtesy of Lisa Schlager
At Supreme Court: Lisa Schlager and daughter Rachel protest Myriad Genetics’ claim to a patent on the BRCA gene, which they say raised the cost of testing.

By Karen Iris Tucker

Published August 13, 2013, issue of August 09, 2013.

When Marcia Watson-Levy was diagnosed with breast cancer in 1997 at age 58, she suspected that heredity played a role: Her sister Rhoda had died of breast cancer 12 years before, at 52.

Yet Watson-Levy, who then lived in San Francisco, said that none of her physicians — her primary doctor, her surgeon or her oncologist — suggested during the years of her treatment that she be tested for a mutation in the BRCA1 gene, which carries a 50 to 70% lifetime risk of developing the disease, or a BRCA2 mutation, linked to a 40 to 60% risk.

Marcia Watson Levy
Marcia Watson Levy

Watson-Levy knew about the screening test for the BRCA mutations, then a couple of years old, but she didn’t push for it. “I assumed that I was probably positive and I didn’t see the need to initiate it myself,” she said. Adding to the likelihood that she carried a mutation was Watson-Levy’s heritage. One in 40 Ashkenazi Jews (about 2.5%) carries a BRCA mutation, compared to 1 in 300 to 500 in the general population (less than 1%).

Placing faith in her doctors that genetic testing was not important in her case, Watson-Levy underwent a mastectomy, received chemotherapy for 3 1/2 years, and then went on with her life. A devotee of silent movies, she and her now-late husband Walter jetted around the country to far-flung film festivals. They frequently sailed the California coast.

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More than a decade later, however, Watson-Levy was alarmed to read in an article that carrying a BRCA mutation dramatically increased the risk of a second primary breast cancer (one unrelated to the first) as well as gynecologic cancer.

The failure to get tested became a pivotal issue in Watson-Levy’s life. It is a problem that continues today for many patients, and is one that Angelina Jolie sought to address when she announced in May that she carried the BRCA1 mutation and had taken the preventive measure of a double mastectomy.



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