The knowledge of danger opens paths of options
Bonnie Jaffe has spent much of the last year living her own possible future — and plotting ways to alter it.
Last October, her 67-year-old mother, Marilyn, was diagnosed with invasive breast cancer, the disease that had killed her own mother.
Bonnie Jaffe, who does business planning and analysis for a Santa Monica-based company, swung into action to coordinate her mother’s care. But at UCLA’s Jonsson Comprehensive Cancer Center, she found that physicians had more on their agenda than battling the clear and present danger to her mother: They were focused on assessing and changing her future cancer risks as well.
Marilyn Jaffe tested positive for a mutation in the BRCA2 gene that increases her risk of developing breast cancer. Physicians encouraged Bonnie to get tested to see if she inherited the mutation from her mother. In June, at age 44, she learned the answer was yes.
Now Jaffe lives with the knowledge that she is five times likelier than the average woman to develop invasive breast cancer and as many as 10 times more likely to get ovarian cancer — a cancer that is especially deadly because it is so rarely caught early.
But in seeing her mother through her breast cancer treatment — which included a double mastectomy, breast reconstruction and a regimen of drugs called aromatase inhibitors to prevent recurrence — Jaffe was given an early glimpse of some of her own options too. That experience forced her to consider taking a dramatic preventive step: having her breasts surgically removed.
Since 2002, the proportion of women like Bonnie Jaffe who have chosen a strategy of preemption to protect themselves from their high genetic risk of cancer has grown from virtually zero to at least 1 in 10. By having her breasts removed, a woman aims to deny breast cancer a place to take root. By having her ovaries, fallopian tubes and often, her uterus removed, a woman looks to nix ovarian cancer’s sanctuary and — because she has removed a key source of estrogen — to reduce her risk for breast cancer as well.
The approach seems sensible enough. But women choosing this route have done so amid uncertainty about its ultimate ability to save lives. A study published last month in the Journal of the American Medical Assn. finally offered strong evidence that such radical steps do, on average, prolong the lives of women with high-risk versions of the BRCA1 and BRCA2 genes.
The JAMA study followed 2,482 carriers of BRCA1 and BRCA2 mutations for about four years after they decided to have prophylactic surgery — or not. Researchers found that the women who had mastectomies had lower rates of subsequent breast cancer than those who declined the surgery. In addition, women who had their ovaries removed were less likely to develop breast or ovarian cancer, or to die of any cause, than women whose ovaries remained intact.
For now, Bonnie Jaffe has decided to proceed with surgery to remove her ovaries, fallopian tubes and uterus but to keep her breasts. Having children was not a priority for her, and, at 44, her chance to do so has largely passed. Even so, she says, “there is something very final and definitive about having surgery” to remove one’s ovaries.
At the same time, Jaffe says she would like to avoid the long and difficult convalescence her mother has endured following her double mastectomy. While the prospect of breast reconstruction might lessen the blow, Jaffe has seen firsthand how exhausting that second round of surgery can be. She reasons that with the removal of her ovaries and uterus, she should avert the worst-case scenario — the development of ovarian cancer — and drive down her breast cancer risk in the process.
In the meantime, she and her doctors will step up their vigilance for any sign of breast cancer with better and more frequent self-exams, yearly magnetic resonance imaging of her breasts and yearly mammograms. If breast cancer does appear, says Jaffe, her breasts may still have to go. But because it will have been caught early, she hopes it would be less likely to threaten her life, and she will have spaced her surgeries further apart.
Bonnie Jaffe says many friends have asked her why she would want to know whether she had a high-risk version of the BRCA2 gene. It’s a view she says she would understand if there were nothing she could or would do to improve her odds. But while none of her options is perfect, the analyst in her sees trade-offs to consider, risks to be shaved and steps to be taken.
“There is a good reason to find out,” Jaffe says, “because you may save your own life.”