These ideas have recently started filtering through to the wider public. Earlier this year, the US-based Ovarian Cancer Research Alliance, one of the largest advocacy organizations for this cancer, had a major shift from an emphasis on early detection; it is now recommending genetic testing, both for diagnosed patients and for other people who know they’re at risk. It now also counsels prophylactic organ removal: opportunistic salpingectomy for anyone at even “average” risk for the cancer; or, if you’re at increased risk, a salpingectomy whether or not it coincides with another procedure, as well as removal of the ovaries.
But this emphasis on genetic testing as a preventive measure hasn’t necessarily been welcomed across the ovarian cancer community, says Sarah DeFeo, the chief program officer at the Ovarian Cancer Research Alliance. “There is this strong attachment to the importance of symptom awareness. And there is this real focus on the promise of early detection,” she says. “And we know that does not work.”
“We need to focus on what does work and what we can do,” she adds. “And we encourage people to know their risk.”
What prevention really looks like
As for me, after I got my test results, I dragged my heels on a decision. After seeing the genetic counselor, I eventually found my way to a gynecological oncologist at New York–Presbyterian. There, I was told that the recommendation for high-risk women my age—approaching 50—is to have the ovaries as well as the fallopian tubes removed as a preventive measure.
This week, shortly before my 49th birthday, I’ll have this surgery, which will instantly trigger menopause—“surgical” or “forced” menopause are the correct and depressing terms. It fills me with dread, frankly. In an effort to prepare, I find myself going back to googling “what to expect,” and the list is astonishing: menopause can bring hot flashes, brittle bones, heart palpitations, memory loss, insomnia, joint pain, depression, vaginal discomfort, bladder issues, hair loss … I usually don’t make it all the way to the end of these lists.
This is where we’re at: a huge advance—finally—in science and technology has shined light on a cancer that has long been in the dark, and has been outsmarting us this entire time. But prevention comes at a price. I’m going to be a walking example of prevention very soon, and it does make me wonder: if you have a gene mutation like mine, it seems that the best way to not get ovarian cancer … is to not have ovaries (or fallopian tubes) at all, which tells me a lot about how powerful this disease really is.
I put that to Miller, who has spent the better part of her career with a full awareness of the disease she was trying to outsmart as a scientist. “I can’t disagree with you,” she replied. “But it’s really the best we have for right now. Is it perfect? Absolutely not, for exactly the reasons that you said. But on the other hand, having watched too many women die of ovarian cancer over my career, I just think we have to do something. And there’s something we can do without increasing the morbidity to women.”
So even as I turn back to googling, there comes a point when I remind myself that surgical menopause is a better outcome than even the possibility of ovarian cancer. It doesn’t take prisoners, this cancer.
Golda Arthur is an audio journalist and podcast producer. She has launched and run podcasts at Vox Media, MIT Technology Review, and Marketplace, and has reported, edited, and produced for the BBC and the CBC. She lives in New York City.