A New York Times story this week about tennis legend Chris Evert’s battle—twice—with ovarian cancer painted a simple and powerful picture: Fearing for her own risk after her sister died of the disease, Evert got tested, caught it early, as stage 1, and treated it successfully in 2021. And though it returned—stage 1 again, meaning it had not spread—she was able to catch that, too, and treat it again. Now the 69-year-old been declared cancer-free a second time.
“As with her original diagnosis,” the story notes, “early testing was critical—a message Ms. Evert shares zealously.”
Except for just one little problem: When it comes to ovarian cancer, there is no such thing as early testing.
“There is no approved screening. There is no method of early detection,” Sarah DeFeo, chief program officer at the Ovarian Cancer Research Alliance (OCRA) , tells Fortune . “It's a rare disease,” with a one-in-87 over-lifetime risk , “so it's not something that happens as part of a well-woman checkup, whether for a gynecologist or for regular internal medicine.”
That’s because, says Dr. Gillian Hanley , a member of OCRA’s scientific advisory committee and an associate professor of obstetrics and gynecology at the University of British Columbia, “all of the screening methods that have been tried have failed to decrease mortality rates to date, which is how we determine whether or not a screening method is effective.”
While there are some standard ways of surveilling for ovarian cancer if it is suspected—including a CA-125 blood test that could possibly indicate tumor markers and a transvaginal ultrasound that could help identify masses—they are imprecise. Plus, they are not indicated or available to women in the absence of either symptoms—which tend not to reveal themselves until the cancer has progressed significantly—or a high-risk factor, meaning the patient has already tested positive for carrying genetic markers that significantly raise the possibility of getting ovarian cancer.
“If you're just a regular, average-risk person walking around in the world, a doctor may be like, [a routine scan is] not medically indicated. There's no need for that… There's no evidence to suggest that ultrasounds are effective," says DeFeo. "So that's not something that is recommended. It's not neutral— it's like, ‘No, don't do it.’”
Instead, what women should consider, she says, is getting tested for genetic markers. It’s something Evert has talked about previously —having tested positive for the BRCA-1 gene after her sister’s death, then undergoing a preventative hysterectomy with removal of her ovaries and fallopian tubes. It was only then, through the pathology report, that she learned she had stage 1 ovarian cancer (which returned , even after the surgery, due to the fact that sometimes microscopic cancer cells remain in the abdomen).
None of those details were mentioned in the most recent New York Times article—but they are actually the most vital, says DeFeo.
“She has talked a lot about getting tested early, but to me, the real story is about the importance of knowing your risk and about risk management,” she says. “I think that that's the important takeaway from her story.”
Why there’s no reliable way to test for ovarian cancer—and what’s recommended instead
Much of the current wisdom around screening comes out of the disappointing 2021 results of a U.K.-based clinical trial that followed 200,000 women for more than 20 years, concluding that screening and symptom awareness do not save lives.
The trial, which was the largest of its kind in the world, randomized patients into three groups: 1) no screening, 2) annual screening with ultrasound, and 3) annual screening with ultrasound and CA-125 blood test. It found no evidence of lives saved in the groups that were tested. “We therefore cannot recommend ovarian cancer screening for the general population using these methods,” lead investigator Dr. Usha Menon noted at the time.
“This is what's tricky and devastating about ovarian cancer, that it needs to be caught so much earlier, we think, in order for it to impact mortality,” says DeFeo. “It's not about catching it three months earlier… We need to find a way to catch this disease years earlier.”
But as of now, that’s not possible. “The technology doesn't exist,” she says. Plus, adds Hanley, most cases of ovarian cancer appear to originate in the fallopian tubes—which are not easily reached or biopsied.
It’s why OCRA’s recommendation officially switched last year from symptom awareness and early detection to something else entirely: the preventative removal of one’s fallopian tubes , called a salpingectomy. It’s an approach that has been endorsed by the American College of Obstetricians and Gynecologists (ACOG) since 2015.
The recommendation applies not only to those who test positive for high genetic risk, such as with BRCA-1 or BRCA-2 gene mutations, but also for all women planning to undergo another pelvic surgery (such as with a hysterectomy, endometriosis, or removal of cysts) if they are finished or not planning on having kids. (For women with the higher risk, an oophorectomy, or prophylactic removal of ovaries, is also recommended.)
“So again, we’re not saying that your regular woman on the street needs to go in and have this elective surgery,” says DeFeo. “But we know that hundreds of thousands of women are having surgery every year anyway, for a different reason, where they could take the opportunity to take out their tubes at the same time, potentially. It's something that they should talk to their doctor about, and it's something that doctors should be thinking about.”
How to approach genetic testing
Besides salpingectomy, other most powerful tool in ovarian cancer prevention is genetic testing, which you can begin by looking at your family history. “I know that in many families that can be hard,” says DeFeo. “But to the extent that you can look at your family history, and if you have a family history of cancer, especially breast and ovarian cancers, and especially at a young age…those are red flags.”
Hanley adds that it is important to look at both sides of your family. "There is a misconception that family history is only relevant on your mother's side, but you can inherit a BRCA mutation from your father as well," she says. "So on either side of your family, if there is a history of breast or ovarian cancer, potentially even prostate or pancreatic cancers, then getting a BRCA test is a very good idea.”
Then, talk to your doctor about getting it started.
DeFeo notes that genetic testing is more accessible than ever. "A lot of insurance covers it. It really depends on each person's situation, but the cost of testing has come down dramatically over the course of the years," she says. "So it is increasingly accessible. And OCRA, for example, offers a free genetic testing program .”
From there, if you are positive, prophylactic surgeries would be recommended, as was the case with Evert.
“She would never have been symptomatic,” says Hanley. “There's no screening method that would have picked that up. The only reason that cancer was diagnosed is because her fallopian tubes were removed and then they were very, very carefully analyzed by a pathologist…and that doesn't occur outside of the case of a BRCA mutation.”
But Hanley, like all others in the field, are counting on that to change. “We're all hopeful that with technology and better understanding, we may still one day be able to develop a screening method that works,” she says. “But we're a long way away from that.”
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This story was originally featured on Fortune.com
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