Every year, about women in the United States get ovarian cancer.
But less than a third do genetic testing, according to a new study published in the Journal of Clinical Oncology.
Among women with breast cancer, less than a quarter had genetic testing for cancer-associated mutations.
The study involved 83,000 women in California and Georgia who were diagnosed with breast or ovarian cancer in 2013 and 2014.
The study findings highlight a gap between national testing guidelines and what happens in practice.
The researchers used information from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program. They also included data from four laboratories conducting genetic testing at the time.
The researchers found that 24 percent of the 77,085 women diagnosed with breast cancer and 31 percent of the 6,001 diagnosed with ovarian cancer had genetic testing done.
“Now we can see that women with ovarian cancer are dramatically under-tested,” Dr. Allison Kurian, the co-lead study author and an associate professor of medicine and health research and policy at Stanford University Medical Center, said in a statement.
“We also learned that between 8 and 15 percent of women with breast or ovarian cancer carry cancer-associated mutations that could be used to drive care decisions and influence family members’ healthcare and screening choices,” she continued.
Among women with ovarian cancer, only 22 percent of black women and 24 percent of Hispanic women were tested. That compares to 34 percent of non-Hispanic white women.
Testing prevalence was also lower in areas where the poverty level was higher.
Sandra M. Brown, MS, LCGC, is manager of the cancer genetics program at the Center for Cancer Prevention and Treatment at St. Joseph Hospital in California.
Brown told Healthline that things have changed since 2014.
“These tests were much more expensive then, easily reaching $4,000. People were more likely to have insurance problems or find it unaffordable. Now it costs about $250, so we’re testing more patients. We have more labs and they’re testing additional genes on their panels,” she explained.
Dr. Stephanie V. Blank is professor of obstetrics, gynecology, and reproductive science at Mount Sinai Hospital in New York. She specializes in ovarian, uterine, and cervical cancers and those at increased genetic risk of these cancers.
Aside from cost, Blank told Healthline that there may be other factors keeping women from testing, such as time constraints and fear of the results.
Testing guidelines for women with ovarian cancer differ from those with breast cancer.
Blank stressed that all women with epithelial ovarian carcinoma should undergo genetic counseling and be offered testing.
“When we’re shooting for universal testing for women with ovarian cancer, less than 40 percent isn’t even close,” she said.
“We have a lot of work to do [regarding] education and new delivery and implementation models,” continued Blank.
Brown said it’s difficult to conclude from this study that breast cancer cases were undertested or underserved. That’s because it’s difficult to say who wasn’t tested or if those women should have been tested.
“All you can really say is that about 25 percent of breast cancer cases were tested, which isn’t terrible. Most were likely younger or estrogen-receptor [ER] negative. If you’re ER positive, you may not meet insurance criteria to do testing,” she said.
Some of the guidelines for testing people with breast cancer include family history of pancreatic, prostate, ovarian, or other breast cancers.
“Even though guidelines have gotten more liberal to include more women with breast cancer, I do think we’re on a trend to change the criteria to include all women with breast cancer,” said Brown.
The results of genetic tests help provide information about prognosis, guide treatment, and affect future screening decisions.
“For family members, genetic testing results can provide an individual with an opportunity to save their own life or provide true relief of the burden of assuming they will get cancer,” said Blank.
“One could even say that a cancer diagnosis is a failure of genetic testing — that we should be testing people before they ever develop cancer — it could be a great opportunity for prevention,” she continued.
Brown calls genetic testing the single most impactful finding.
“It’s important for breast cancer, but for women with ovarian cancer it has a huge impact on survival,” she said.
Brown also noted that there’s a severe shortage of genetic counselors in the United States. Some states have only a single genetic counselor or none at all.
“It’s a huge issue trying to train more people to be genetic counselors. We need to support policy changes on the federal level so genetic counseling programs have more funding. There’s a bill currently in Congress that provides recognition for genetic counselors as healthcare providers,” said Brown.
She noted that genetic counselors are a resource that can help control healthcare spending in the long run.
“We need to make sure everybody gets the genetic consultation and risk assessment they need,” said Brown.
At the Center for Cancer Prevention and Treatment, women with ovarian cancer were referred for genetic counseling about 50 percent of the time in 2014, said Brown.
After implementing physician outreach efforts, the referral rate for ovarian cancers rose to 100 percent.
“Everyone on the patient care team needs to have more education around recommendations for genetic testing, why it’s important, and how to talk about it. Ovarian cancer is a scary, devastating diagnosis,” she explained.
“We need to acknowledge that to the patient. But it’s really important to get genetic testing as soon as you can,” said Brown.