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A New York Times<\/em> story this week<\/a> about tennis legend Chris Evert\u2019s battle\u2014twice\u2014with ovarian cancer<\/a> 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\u2014stage 1 again, meaning it had not spread\u2014she was able to catch that, too, and treat it again. Now the 69-year-old been declared cancer-free a second time.\u00a0<\/p>\n \u201cAs with her original diagnosis,\u201d the story notes, \u201cearly testing was critical\u2014a message Ms. Evert shares zealously.\u201d<\/p>\n Except for just one little problem: When it comes to ovarian cancer, there is no such thing as early testing.<\/p>\n \u201cThere is no approved screening. There is no method of early detection,\u201d Sarah DeFeo, chief program officer at the Ovarian Cancer Research Alliance (OCRA)<\/a>, tells Fortune<\/em>. \u201cIt\u2019s a rare disease,\u201d with a one-in-87 over-lifetime risk<\/a>, \u201cso it\u2019s not something that happens as part of a well-woman checkup, whether for a gynecologist or for regular internal medicine.\u201d\u00a0<\/p>\n That\u2019s because, says Dr. Gillian Hanley<\/a>, a member of OCRA\u2019s scientific advisory committee and an associate professor of obstetrics and gynecology at the University of British Columbia, \u201call 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.\u201d<\/p>\n While there are some standard ways of surveilling for ovarian cancer if it is suspected\u2014including a CA-125 blood test<\/a> that could possibly indicate tumor markers and a transvaginal ultrasound that could help identify masses\u2014they are imprecise. Plus, they are not indicated or available to women in the absence of either symptoms\u2014which tend not to reveal themselves until the cancer has progressed significantly\u2014or a high-risk factor, meaning the patient has already tested positive for carrying genetic markers that significantly raise the possibility of getting ovarian cancer.<\/p>\n \u201cIf you\u2019re just a regular, average-risk person walking around in the world, a doctor may be like, [a routine scan is] not medically indicated. There\u2019s no need for that\u2026 There\u2019s no evidence to suggest that ultrasounds are effective,\u201d says DeFeo. \u201cSo that\u2019s not something that is recommended. It\u2019s not neutral\u2014 it\u2019s like, \u2018No, don\u2019t do it.\u2019\u201d<\/p>\n Instead, what women should consider, she says, is getting tested for genetic markers. It\u2019s something Evert has talked about previously<\/a>\u2014having tested positive for the BRCA-1 gene after her sister\u2019s 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<\/a>, even after the surgery, due to the fact that sometimes microscopic cancer cells remain in the abdomen).<\/p>\n None of those details were mentioned in the most recent New York Times<\/em> article\u2014but they are actually the most vital, says DeFeo.<\/p>\n \u201cShe 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,\u201d she says. \u201cI think that that\u2019s the important takeaway from her story.\u201d<\/p>\n Much of the current wisdom around screening comes out of the disappointing 2021 results of a U.K.-based clinical trial<\/a> that followed 200,000 women for more than 20 years, concluding that screening and symptom awareness do not save lives.\u00a0<\/p>\n 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. \u201cWe therefore cannot recommend ovarian cancer screening for the general population using these methods,\u201d lead investigator Dr. Usha Menon noted<\/a> at the time.\u00a0<\/p>\n \u201cThis is what\u2019s tricky and devastating about ovarian cancer, that it needs to be caught so much earlier, we think, in order for it to impact mortality,\u201d says DeFeo. \u201cIt\u2019s not about catching it three months earlier\u2026 We need to find a way to catch this disease years<\/em> earlier.\u201d<\/p>\n But as of now, that\u2019s not possible. \u201cThe technology doesn\u2019t exist,\u201d she says. Plus, adds Hanley, most cases of ovarian cancer appear to originate in the fallopian tubes\u2014which are not easily reached or biopsied.\u00a0<\/p>\n It\u2019s why OCRA\u2019s recommendation<\/a> officially switched last year from symptom awareness and early detection to something else entirely: the preventative removal of one\u2019s fallopian tubes<\/a>, called a salpingectomy. It\u2019s an approach that has been endorsed<\/a> by the American College of Obstetricians and Gynecologists (ACOG) since 2015.<\/p>\n 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 <\/em>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.)\u00a0<\/p>\n \u201cSo again, we\u2019re not saying that your regular woman on the street needs to go in and have this elective surgery,\u201d says DeFeo. \u201cBut 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\u2019s something that they should talk to their doctor about, and it\u2019s something that doctors should be thinking about.\u201d\u00a0<\/p>\n Besides salpingectomy, other most powerful tool in ovarian cancer prevention is genetic testing, which you can begin by looking at your family history. \u201cI know that in many families that can be hard,\u201d says DeFeo. \u201cBut 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\u2026those are red flags.\u201d<\/p>\n Hanley adds that it is important to look at both sides of your family. \u201cThere is a misconception that family history is only relevant on your mother\u2019s side, but you can inherit a BRCA mutation from your father as well,\u201d she says. \u201cSo 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.\u201d <\/p>\n Then, talk to your doctor about getting it started.<\/p>\n DeFeo notes that genetic testing is more accessible than ever. \u201cA lot of insurance covers it. It really depends on each person\u2019s situation, but the cost of testing has come down dramatically over the course of the years,\u201d she says. \u201cSo it is increasingly accessible. And OCRA, for example, offers a free genetic testing program<\/a>.\u201d<\/p>\n From there, if you are positive, prophylactic surgeries would be recommended, as was the case with Evert.\u00a0<\/p>\n \u201cShe would never have been symptomatic,\u201d says Hanley. \u201cThere\u2019s 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\u2026and that doesn\u2019t occur outside of the case of a BRCA mutation.\u201d<\/p>\n But Hanley, like all others in the field, are counting on that to change. \u201cWe\u2019re all hopeful that with technology and better understanding, we may still one day be able to develop a screening method that works,\u201d she says. \u201cBut we\u2019re a long way away from that.\u201d<\/p>\n More on cancer:<\/p>\n<\/div>\n\nWhy there\u2019s no reliable way to test for ovarian cancer\u2014and what\u2019s recommended instead<\/strong><\/h2>\n
How to approach genetic testing<\/strong><\/h2>\n