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
The results of Tomomi's mastectomy continued...
It was painful, Miyuki remembers. She also worried that the treatment was taking away her sister's optimism. "Tomomi had always been a positive person, and she stayed that way throughout the surgeries. But during the chemo, I was scared that the experience would somehow change her outlook and personality."
Finally, in late March, all the chemotherapy treatments were done. Tomomi could see the relief on her mother's face: "The death glare was gone." But Keiko knew from her own experience that the next stage — living as a cancer survivor — might be difficult for her energetic, proactive daughter. "The doctors tell you, 'Your cancer is gone; you are finished.' For the woman, though, it is not finished," she says.
Tomomi agrees that she's impatient to get back to "normal," to stop "overthinking things like dating" and what she should tell guys. Will they understand the consequences? she wonders. "Mostly, I want to be able to think about my future without focusing on cancer," Tomomi says.
"That is very common," her mother begins, mentioning comments she's heard from members of the Japanese-speaking breast cancer support group she runs. Tomomi interrupts, laughing: "OK, Mom, you don't have to defend me." Her mother smiles. Though they might be opposites in personality, it's obvious that a special bond unites them.
Something else had changed in Tomomi. As she began to reflect on her cancer experience, the idea of children — whether from her frozen eggs or by adoption — began to grow on her, overshadowing her concerns about passing on a breast cancer legacy. "So many people — my family and friends, even people I hadn't known before — have helped me through this," says Tomomi. "It's shown me that if someday I can give life in some way, and if that person experiences the same love and happiness I've been embraced with, she will be very lucky."
Should breast cancer genes be patented?
Because Tomomi Arikawa's mother and grandmother both had breast cancer, her doctor sent her to be tested for mutations in two key breast cancer genes: BRCA1 and BRCA2. The University of Utah Research Foundation holds the patent on these genes, and the lab that performed the test, Myriad Genetics of Salt Lake City, has the exclusive license to perform the test. The test can cost over $3,000, plus $500 to $700 for a supplementary service called BART that looks for large-scale gene rearrangements. (Tomomi, who tested negative, had to pay for BART, but her insurer covered the main test.)
Beyond the high fees, this monopoly means that women who receive inconclusive results from Myriad or who simply want to confirm the findings generally can't go for a second opinion from another lab. Moreover, many scientists argue that Myriad's exclusivity has held back research into genetic factors in breast cancer, which the company has denied. "They have a huge amount of information, and from the scientific point of view, we feel that as a community we could be pretty smart about figuring out what that information means," says Wendy Chung, M.D., Ph.D., director of clinical genetics at Columbia University and a plaintiff in a lawsuit brought by the American Civil Liberties Union and the Public Patent Foundation to challenge Myriad's exclusivity in testing.
In March 2010, the plaintiffs won, with the judge ruling that DNA sequences could not be patented. But Myriad appealed, and on July 29, the U.S. Court of Appeals, in a two-to-one vote, ruled in Myriad's favor. As Good Housekeeping went to press, no one knew what the next steps would be, but it's possible the case will end up in the Supreme Court