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I'm Too Young to Get Breast Cancer!

At 31, she learned she'd inherited the "family disease"—and then Tomomi Arikawa found an amazing way to fight it

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Breast cancer strikes about 200,000 U.S. women each year, but fewer than 7% are under 40. And only 5% to 10% of new cases are linked to a family history similar to Tomomi's. But it's not surprising that Keiko and later Tomomi tested negative for the BRCA1 (breast cancer susceptibility gene 1) and BRCA2 mutations, which give women up to an 80% lifetime risk of developing breast cancer. (Shizuka, never tested, died of Alzheimer's disease in 2008.) The mutations are rare, affecting only one in 1,000 women, and rarer still among Japanese Americans like the Arikawas. Indeed, breast cancer rates generally are lower in Asian Americans than in other ethnic groups.

Yet breast surgeons see families like Tomomi's all the time — one member after another stricken with the disease, but negative on genetic tests, suggesting that other, still undiscovered, genetic factors are at work. "When BRCA1 and BRCA2 were identified more than 15 years ago, we thought it would open the floodgates for BRCA3 and BRCA4 and so forth," says Tomomi's surgeon, Elisa R. Port, M.D., codirector of the Dubin Breast Center at the Mount Sinai Medical Center in New York City. "But that hasn't happened."

The lack of a known breast cancer gene doesn't mean the disease isn't genetic, however. "Probably in someone like Tomomi, there's an accumulation of different genetic mutations. We just can't test for them yet," Dr. Port explains.

Making heart-wrenching decisions

With no definitive genetic information to go on, families like Tomomi's can face the same heart-wrenching decisions about prophylactic surgery (removing both breasts as a preventive), aggressive chemotherapy, and childbearing as BRCA-positive women do, all without knowing which particular gene or genes might make them vulnerable.

The day Tomomi learned that the lump was malignant, she huddled with her mother and father (both semiretired education consultants) and her sister at the parents' apartment. Keiko prepared their favorite foods — grilled fish, rice, salad — "but everybody was too upset to eat," says Tomomi. Out of earshot, in their bedroom, her parents were also sharing fears that their daughter might now have a harder time finding a husband. Tomomi, however, was focused only on getting back to normal. Everything might be on hold for the moment, but after the cancer was gone — and she was sure it would be — she planned to pick up her life as a young news editor: searching for stories for ABC, traveling with the correspondents, enjoying pomegranate margaritas with girlfriends, and going on dates.

Always outspoken ("overly so, in the opinion of my family"), she sent out mass e-mails about her illness to friends, family, and colleagues: "The drama queen of the family has cancer, so you can just imagine what they are having to deal with right now. Oh, boy!" she wrote.

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