Genetic cancer test often urged for wrong women

NEW YORK (Reuters) - Doctors are too quick to recommend expensive genetic counseling or testing for ovarian cancer, but at the same time often fail to refer women at high risk for the disease, government researchers said.

Ovarian cancer isn’t very common -- it strikes just one in 71 women, many of them elderly, whereas one in eight women get breast cancer. But because there aren’t any good screening tests for ovarian cancer, it’s usually not discovered until it’s too late.

But a survey of nearly 1,900 physicians, published in the journal Cancer, found that about 30 percent said they’d refer women at average risk of the disease, although several guidelines discourage that.

By contrast, as many as 60 percent said they wouldn’t refer a woman at high risk, which guidelines do encourage.

“You would be over-testing a lot of women, spending a lot of resources and a lot of money,” said Jacqueline Miller at the U.S. Centers for Disease Control and Prevention, who worked on the survey.

It’s also possible that there would be some false alarms as well, exposing women to unnecessary treatment and other harms, she added.

“For a lot of women, just going through the test creates a lot of anxiety,” she said.

A small percentage of women carry mutations in the BRCA 1 and 2 genes, which make them very likely to develop both breast and ovarian cancer. Myriad Genetics, a Salt Lake City-based company, charges $3,340 to test for BRCA 1 and 2 cancer-causing mutations -- but told Reuters Health that patients usually only pay $100 out of pocket.

Given that just one in 300 or fewer women carry the mutations, testing those at average risk would put needless strain on the health care system, Miller added.

The survey was based on three fictional patient scenarios -- one at average risk, one at medium risk and one at high risk.

The U.S. Preventive Services Talk Force (USPSTF), a federally-supported expert panel, advises against routine counseling and testing for women who don’t have suspicious cases of cancer in their family, such as two close relatives with breast cancer, one of whom got it before age 50.

“High risk is a little bit complicated,” said Michael LeFevre of the USPSTF.

“Physicians can’t be expected to carry all of these nuances around in their brain, but I think they should know what the triggers are.”

The survey suggested that doctors who were better at assessing risk were more likely to follow the guidelines. Yet even when they correctly put a woman in the average risk category, 22 percent of doctors still referred her for counseling or testing.

“Physicians aren’t doing as good a job as we should at identifying people who should and should not be referred for counseling or testing,” said LeFevre.

For those women at high risk, getting genetic counseling and possibly testing may help them decide how they want to deal with that risk.

For instance, 57 percent of women with BRCA 1 mutations get breast cancer by age 70, and 40 percent get ovarian cancer. Choosing to have the breast and ovaries removed, or taking certain medications, will cut that risk, said Miller.

The most important lesson from the new findings are to make sure that women at high risk are identified so they can get the right counseling, she added.

But she said that women should never agree to get tested without knowing the reasons.

“You should have that conversation with your provider: why do you feel I’m at high risk? If a physician tells you you should get genetic counseling, you should understand why,” she added.

(Editing by Elaine Lies)