Angelina Jolie Pitt should be credited for again focusing attention on the beyond difficult (and typically private) dilemmas that haunt women who carry a cancer-causing BRCA mutation. But in explaining in the New York Times her own decision to undergo ovarian surgery, the celebrity misled these very women by implying that several prevention approaches are equally effective.
The best data backs the path that Jolie took. When a woman with this risky mutation has her ovaries and fallopian tubes removed, ideally by her late 30s to 40s, her lifetime risk of ovarian cancer can be slashed by as much as 80 percent, according to a large-scale study published last year in the Journal of Clinical Oncology.
The reason that preventive surgery makes such a difference is that ovarian cancer is a particularly sneaky and malignant character, one that screening tests don’t necessarily pick up. Women with the mutation can get regular ultrasounds and blood tests for elevations in a protein called CA-125. Those tests might reassure women that they are “doing something.” But they can’t be relied upon to flag malignancies early enough that the cancer can be easily treated. “No effective methods of ovarian cancer screening currently exist,” the National Cancer Institute states quite bluntly on its website.
Consider these numbers: Just 15 percent of ovarian cancers are detected while they’re still confined to the ovaries, when the five-year survival rate is 92 percent. Once the malignancy spreads elsewhere in the body, that survival figure drops to 27 percent. Most women face a 1.3 percent lifetime chance of developing ovarian cancer. For those women carrying a BRCA mutation, that risk can reach as high as 40 percent.
So for a woman with a BRCA mutation, what are the treatment options besides surgery? Jolie mentions taking birth control pills, which may reduce ovarian cancer risk, according to the National Cancer Institute. But she also writes that she’s consulted with naturopaths, and she describes a vague but disturbing prevention strategy: relying on “alternative medicines combined with frequent checks.”
Given her stature, this is spectacularly careless advice. Staking your life on therapies that haven’t been rigorously tested or approved by the Food and Drug Administration or on screening tests that lack the support of the National Cancer Institute is a potentially deadly gamble.
As genetic testing becomes increasingly common, more women are learning about their BRCA statuses before they’ve reached middle age. Last fall, I spent a day in an ovarian screening clinic at Houston’s MD Anderson Cancer Center as doctors and nurses educated BRCA-positive women, some of them young and cancer-free, about their options.
In some instances, women balk at getting the surgery despite the doctors’ fervent efforts at persuasion, clinicians told me. Removing their ovaries and fallopian tubes means that the women can’t have biological children without expensive interventions such as egg freezing and in-vitro fertilization. The surgery also induces menopause. Women may choose to delay the surgery until they’re certain that they’ve completed their families. Even if they’re done with having children, they may want to avoid being throttled into menopause a decade or more early. One 2012 study found that nearly half of women with known mutations (but who were cancer-free) hadn’t gotten the surgery within five years of learning about their own genetic risks.
Jolie mentions another intriguing, albeit controversial approach. Pathologists studying tissue from women who had surgery started noticing very early cancers in the fallopian tubes, but not in the ovaries. Some researchers estimate that as many as 70 percent of what has been thought of as ovarian cancer may have actually begun in one of the adjacent tubes.
For women fearful of premature menopause, could removing the fallopian tubes while leaving the ovaries intact provide a partial buffer against malignancies? Doctors at MD Anderson launched a small study last year, designed for women who want to buy time before hitting menopause. Nationally, a coalition of U.S. medical centers is developing a larger-scale study of tube removal in roughly 250 premenopausal BRCA mutation carriers, which has been submitted for approval to the National Cancer Institute.
In her op-ed, Jolie describes this “tubes-only” surgery as an option for women who don’t want to give up on bearing children. But MD Anderson’s study is limited to women who are not planning to have more children. Moreover, any attempt to bear a child without a fallopian tube to transport the egg to the uterus would involve costly techniques that many noncelebrities can ill afford.
This approach is still highly experimental. While many ovarian cancers may start in the fallopian tubes, not all of them have been traced from there. And as for deciding when to schedule such a surgery, it’s unclear at what age these malignancies might migrate from a woman’s tube to her ovary or other parts of the body.
In reporting about BRCA-related decisions and this experimental procedure specifically, I’ve talked to women who know their risks and remain highly reluctant to give up the hormonal balance provided by their ovaries. We all hope—women with and without the BRCA mutation—that an effective ovarian cancer screening test will be identified soonest.
But having options doesn’t mean that all options are created equal. Jolie understandably didn’t want to scare BRCA-mutation-positive women with her story. Yet the stakes are too high to muddy up the current scientific realities. As women with these mutations age into their 40s and beyond, when their ovarian cancer risk markedly increases, the best evidence today is for ovary and fallopian tube removal. Knowing they’re using a scientifically validated approach may help these women, hopefully, reach some peace of mind with the quality-of-life ripple effects.