How to Know If You Should Get a Genetic Test for Ovarian Cancer
Genetic testing is more accessible than ever—could it help you gauge your ovarian cancer risk?
Part of what makes ovarian cancer so worrisome is that it's notoriously difficult to catch early. The cancer, which starts in the ovaries, might not cause any symptoms at all. Or it triggers vague symptoms like bloating and abdominal pain that may be brushed off as just another stomachache.
A women has less than a 2% chance of developing ovarian cancer in her lifetime, according to the American Cancer Society (ACS). Ovarian cancer risk increases as you get older; most women are diagnosed after menopause. Women who are obese also are at a higher risk. As with many cancers, having a family history of the disease makes your chances go up too.
Sometimes a family history is a signal that there's an underlying genetic component to ovarian cancer. Up to 10% of ovarian cancers are the result of inherited genetic mutations, most notably in two genes, BRCA1 and BRCA2, according to the ACS. Many women are aware that these gene mutations can cause breast cancer, but they raise ovarian cancer risk as well. (Who can forget Angelina Jolie, who carries a BRCA1 mutation, having her ovaries removed preventively to lower her risk of cancer?) A BRCA mutation can increase a woman’s risk of ovarian cancer up to 70% over her lifetime.
Which is why it’s understandable that women may be interested in learning if they are at a genetic risk for ovarian cancer before they have any symptoms. Gynecologic oncology professor Elizabeth Swisher, MD, says she’s seen an uptick in what she calls “patient-driven interest” in genetic testing for ovarian cancer risk. That's both good and bad, she says.
"It’s a plus in terms of getting information to more people, but it can also be a negative in that patients are not always getting the appropriate test, or they’re getting back results that are being misinterpreted," says Dr. Swisher, also the co-leader of the Ovarian Cancer Dream Team from Stand Up To Cancer. "We want it to become cheaper and more accessible, but also for it to be used accurately."
Who should get tested?
So how do you go about using genetic testing for ovarian cancer wisely? First, consider your family history of the disease. “For people with ovarian cancer somewhere in their family tree, it’s worth it to meet with a genetic counselor to go through a complete risk assessment,” says North Memorial Health Cancer Center genetic counselor Joy Larsen Haidle, a cancer expert and past president at the National Society of Genetic Counselors.
A genetic counselor or another health care professional can help trace patterns of not just ovarian but other cancers like breast, colon, and prostate in your family tree. These diseases and more can be telling about your own genetic risk. “It doesn’t have to be a pattern of ovarian cancer to help us determine the odds that there’s an inherited component,” she says.
Some people might not have a lot of information to go on, Dr. Swisher points out. “If someone is adopted or has a very small family, they might want to get a genetic test because they don’t have a lot of family information,” she says. “But if you have a large family with no cancer in it, it’s probably not a great use of money.” Determining what makes genetic testing a worthy investment is “a hard line to navigate” she says, with a lot of gray area.
To help you make that decision, it's important to learn what the test can and can’t tell you, Haidle says, as well as what you would do with the information you learn. Would you be willing to have your ovaries removed preventively? How high would your lifetime risk of ovarian cancer have to be to do so? “You’d want to have had a really thoughtful conversation about those risks and benefits to decide if that’s the right decision,” she says.
If you've already been diagnosed with ovarian cancer, genetic testing could benefit both you and your family, she adds. The results can be used to help guide treatment decisions—and you could alert relatives about the potential risk to their own health, she says.
Finding the right test
Once you’ve decided you want to do genetic testing, make sure you get the right test for you. “All tests are not created equal, and that creates confusion for consumers,” Dr. Swisher says. You’ll be in the best hands if you can do the test through your doctor, but insurance doesn’t always cover it, she says.
If you go the at-home route, she suggests looking for a test that includes access to a genetic counselor at no extra cost. (Most tests will run you about $200 to $300.) “It’s not like going and getting your cholesterol checked and having a doctor say it’s good or it’s bad,” she says. “People need to know it is a complicated medical test and make sure to gather all the information.”
Genetic testing for ovarian cancer risk usually involves a blood test—but some at-home tests use saliva samples instead. High-quality, at-home tests now exist that screen for a panel of different genes linked to cancer, Dr. Swisher explains, like Color Genomics. But others only test for a couple of genes. You may want to enlist the services of a genetic counselor before you do any testing, just to help you navigate your many options, Haidle says. (You can find one near you at FindAGeneticCounselor.com.)
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Interpreting the results
“Testing has to be interpreted in the context of family history,” Dr. Swisher says. A woman with a strong family history of ovarian cancer who tests negative for a specific gene mutation is still at a higher risk for ovarian cancer. “She may think she has no risk, and that’s not exactly accurate,” she says.
Arm yourself with as much information from your family as you can—and share all the details with the doctor or genetic counselor reading your test results. “Take the time to talk with relatives and learn about the health problems in the family,” Haidle says. Ask about types of cancers your relatives have experienced and the ages at which they were diagnosed, she says. “All of these nuggets of information can help make the picture more clear.”
Dr. Swisher stresses that genetic testing is not supposed to increase your worry about your ovarian cancer risk or your odds of developing any type of disease. “Too much worry is paralyzing. We don’t want women to get hyped up about risk factors they can’t control, it’s not going to do anything to help them,” she says. But if you’re curious about genetic testing, concerned about your family history, and “as long as you get the right information and the right test,” she advises, consider it a proactive step.