Many women at high risk for ovarian cancer don’t know it

Any woman who’s watched her mother or sister struggle with breast cancer knows that she’s likely at high risk for the disease herself. But what she probably doesn’t realize is that she may have an increased chance of ovarian cancer as well, according to a new study by Fred Hutchinson Cancer Research Center scientists.

In an analysis of nearly 1,900 Seattle-area women with family histories that could suggest dangerous BRCA1 or BRCA2 genetic mutations that raise cancer risk, nearly two-thirds of those surveyed knew they should be worried about breast cancer – but more than 75 percent had no idea they should be concerned about ovarian cancer as well.

Those were startling findings to Dr. Robyn Andersen, an expert in ovarian cancer symptoms and screening in Fred Hutch’s Public Health Sciences division. She found that in the more than 15 years since BRCA testing has been available, awareness among high-risk women of ovarian cancer hadn’t budged, even though the American Cancer Society estimates the disease will be  diagnosed in nearly 22,000 U.S women this year and will kill more than 14,000.

“I was not surprised that it hadn’t completely flipped,” said Andersen, whose paper was published recently in the journal Behavioral Medicine. “But that it was nearly unchanged was surprising.”

Her thoughts were echoed by Dr. Debbie Saslow, director of breast and gynecologic cancer for the American Cancer Society, who called the study results “a little surprising – and really disappointing.”

“If this manuscript is generalizable outside of Seattle, in some cases, it might be worse,” Saslow said. “If these results hold true, women will become more educated and aware of their breast cancer risk, but not their ovarian cancer risk.”

Both Andersen and Saslow say that more high-risk women should be directed to genetic counseling, either by primary care providers or during routine mammogram or other screenings.

Awareness of the potential for ovarian cancer is vital, particularly for women who may have BRCA1 and BRCA2 mutations, Andersen said. Although the numbers are far smaller than for breast cancer – which is diagnosed in more than 230,000 women in the U.S. each year and kills nearly 40,000, according to the American Cancer Society – about 85 percent of ovarian cancer cases are detected at a late stage when disease has spread and prognosis is poor.

“In many ways, ovarian cancer is the more frightening cancer,” Andersen said.

In the new study, Andersen and colleague recruited participants from a larger randomized, controlled trial conducted by Fred Hutch and Swedish Medical Center researchers about the effect of genetic counseling on rates of prophylactic ovary removal. They included women aged 35 to 80 with a family history of breast or ovarian cancer who received mammograms between January 2006 and April 2008 at three facilities operated by Swedish in Seattle.

The women filled out a questionnaire to determine their level of risk for BRCA1 or BRCA2 mutation, including common questions about family members with breast or ovarian cancer and Ashkenazi Jewish ancestry, which can predispose people to BRCA risks.

The analysis excluded women who had previously had breast or ovarian cancer themselves, or who had previous surgery to remove ovaries because they could be expected to have different levels of worry about cancer risk than women who hadn’t personally been affected.

Of the 1,885 study participants, 738 were considered at high risk for BRCA mutations, while 1,147 were considered at moderate risk.

High-risk women were far more likely than moderate-risk women to consider themselves at risk for breast cancer, 66 percent vs. 42 percent, but when it came to ovarian cancer, only about 22 percent of high-risk women perceived their risk to be higher than average, compared with 7.4 percent of the moderate-risk women.

At the same time, only 15 percent of the high-risk women reported receiving genetic counseling about their cancer risks, the study found.

That’s alarming, said Andersen, particularly in an area like Seattle, which has high levels of education and health awareness and good access to genetic counseling and testing. Results in areas with less education and fewer resources might be worse, she said.

The study was conducted well before actress Angelina Jolie made BRCA testing and prophylactic mastectomy a national conversation in May 2013, but Andersen isn’t sure even that high-profile emphasis will help.

“Even with Angelina Jolie, the main discussion was about breast cancer,” Andersen said. “There should have been more of a discussion of her ovarian cancer risk.”

Jolie did reveal that her BRCA1 mutation gave her an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. And she’s indicated in news reports that she plans to have surgery to remove her ovaries as well.

Because BRCA mutations are relatively rare in the general population, experts suggest that testing of people who don’t have cancer should be performed only when a person’s family history suggests the possibility of a genetic defect. In 2013, the U.S. Preventive Services Task Force, USPSTF, recommended that women with family members with breast, ovarian, fallopian tube or peritoneal cancer be evaluated to see if their family history suggests increased risk of BRCA genes.

Maureen Carroll, 69, a retired teacher in Seattle, knew her risk for breast cancer was high after cancer led to a mastectomy when she was 36. But it wasn’t until she volunteered for the Swedish Medical Center study that she was referred for genetic counseling – and then genetic testing.

She had put off the counseling and the test out of fear, she acknowledges.

“I don’t seek out further information about something that frightens me,” she said. “It was something that I was frankly hiding from.”

But when the test revealed she had a BRCA1 genetic mutation, Carroll agreed to have an oophorectomy, surgery to remove her ovaries, in 2009 to reduce her chances of ovarian cancer. Three years ago, she had a second mastectomy.

Although she wouldn’t have qualified for Andersen’s study because of her early history of breast cancer, Carroll was part of the larger study about the impact of genetic counseling on ovary removal, with results to be published soon. She said she wants other women to recognize the value of genetic counseling.

“I’m so grateful,” Carroll said. “This was nothing I knew about before I had the test.”

Want to learn more about ovarian cancer?

Ovarian cancer patients and survivors are highly encouraged to attend the 10^th biennial Ovarian Cancer Research Symposium to be held Monday and Tuesday, Sept. 8 and 9, at Seattle University. The longest running scientific meeting in the U.S. to focus exclusively on ovarian cancer, the symposium is jointly sponsored by the Marsha Rivkin Center for Ovarian Cancer Research, the American Association for Cancer Research and Swedish Medical Center. There is no charge for ovarian cancer patients and survivors. Click here for more information.

Related stories:

• The Angelina Jolie effect: One year later
• Too much screening? Patients with limited life expectancy still getting cancer tests
• The paradox of PSA screening for prostate cancer

JoNel Aleccia is a staff writer at Fred Hutchinson Cancer Research Center. From 2008 to 2014, she was a national health reporter for NBC News and msnbc.com. Prior to that she was a reporter, editor and columnist for more than two decades at newspapers in the Northwest. Reach her at jaleccia@fredhutch.org. 

Solid tumors, such as those of the breast and ovaries, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.