Many women at high risk for ovarian
cancer don’t know it
75 percent of those at high risk for BRCA mutations have no idea
they may have increased chance of ovarian cancer, Hutch study shows
grew up in New York City and then worked as an educator for years in New Jersey. Now, she enjoys her retired
years by gardening and reading in her West Seattle home. Maureen jokes that she got down to 200 lbs. of books
when she moved to Seattle 10 years ago, but that she has slowly worked her way back up to 300 lbs., actually
more if you count the full set of recently acquired Encyclopedia Britannica she has displayed next to the front
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
“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
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
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
Of the 1,885 study participants, 738
were considered at high risk for BRCA mutations, while 1,147 were considered at moderate
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
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
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
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
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
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.”
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JoNel Aleccia / Fred Hutch News Service - Aug. 21,