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Why don’t more breast cancer patients receive genetic testing or genetic counseling?

If your life were on the line, you'd want access to every bit of information that could help improve your outcome. So why are many breast cancer patients getting treatment — including mastectomies — without the aid of information from genetic testing and genetic counseling?

The cost isn't the issue. Genetic screening that cost about $4,000 five years ago is now about $250 and is widely accessible, cancer geneticist Allison Kurian, MD, said in a recent interview. The "new bottleneck," Kurian said, is doctors.

A recent Stanford Magazine article explains:

There’s widespread misunderstanding and significant underuse by physicians of genetic testing for breast cancer patients. Some women who want and would benefit from genetic testing still aren’t receiving it because their doctors don’t bring it up. And many of those who do get tested only do so after surgery or never receive genetic counseling — so they may decide to have life-altering surgery without understanding whether they’re actually at high risk of additional breast or ovarian cancers.

Earlier this year, Kurian and her colleagues published a pair of studies that found roughly two-thirds of 2,500 breast cancer patients surveyed wanted genetic testing, yet less than one-third actually received it and even fewer received genetic counseling. The second study of 2,000 breast cancer patients found nearly half of the patients that had double mastectomies didn't even have the genetic mutations that would increase their cancer risk.

“As we are starting to look at more genes and really understand them, it is harder to know what is the right test to order, and how to implement a plan based on the findings,” Kurian, a member of the Stanford Cancer Institute, said.

Now that it’s possible to test for mutations on 40 different genes associated with breast cancer, "our problem is no longer purely getting genetic information," Kurian explained. "We also have to decide: Should any doctor be able to order this testing, even without expertise to interpret it? Some of the genes are really well-established; others are an alphabet soup, and we don’t know much [about them]. There is a lot of work to be done on how we use this information."

To help doctors and patients get the information they need to make informed decisions about breast cancer risk and treatment, Kurian is working with the National Comprehensive Cancer Network to revise and update their recommendations on genetic testing. Kurian and her colleagues have also developed an online tool that helps women with BRCA mutations and their health care providers assess and manage cancer risk.

Previously: Aiming for clarity in cancer gene testing, researchers at Stanford and Fox Chase turn to big dataGenetic tests for breast cancer underused, misunderstood, say researchers and Women “undertested” for breast cancer mutations, say researchers
Illustration by Melinda Beck

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