SGO: Few Women Aware of Hereditary Cancer Hazards

March 6, 2007

SAN DIEGO -- Irrespective of their education and income, women don't seem to have much interest in their genetic risks of cancer, researchers said here.

SAN DIEGO, March 6 -- Irrespective of their education and income, women don't seem to have much interest in their genetic risks of cancer, researchers said here.

And many were not interested in following up on the information when they were judged to be at high risk of one of the hereditary syndromes, according to Michael Manuel, M.D., a gynecologic oncologist in private practice in San Jose, Calif.

There was a "large disconnect" about the issue, Dr. Manuel said at the annual meeting of the Society of Gynecologic Oncologists here, after presenting the results of a survey he and colleagues conducted in the San Jos and Silicon Valley region.

And in places where women are "less aggressive about their health care," Dr. Manuel said, the "disconnect may be even larger."

The survey, conducted at a mammogram center at San Jos's Good Samaritan Hospital, asked about personal and family history of cancer, with the aim of deducing the rate of hereditary breast cancer, Lynch syndrome, and p16-related melanoma, Dr. Manuel told a plenary session at the meeting.

From May to October 2006, the researchers got 2,845 responses to their survey, or about a 90% response rate, Dr. Manuel reported. Of those responses, analysis showed that 313 women (11.4 %) would be considered high-risk for at least one of the three syndromes.

Broken down by syndrome, he said, 88.5% of women were at risk for breast cancer, 6.1% for Lynch syndrome, and 3.8% for p16-related melanoma. Some women appeared to be at risk for two syndromes, he said.

Of those high-risk women, Dr. Manuel said, about half (148) had had cancer. Specifically:

  • 121 had had breast cancer, including 78 who had the diagnosis before the age of 50.
  • Nine had had melanoma, seven ovarian cancer, one uterine cancer (below the age of 50), and 10 cancers of different types.

Despite that, he said, less than 3% of the 313 women considered to be high-risk had ever had either genetic counseling or testing. And when he and colleagues called the 198 high-risk women who had agreed to be reached, only about one in three (33.8%) expressed interest in getting tested, discussing the issue with a family doctor, or talking to family members.

Among the barriers to follow-up, he said were privacy concerns, age, and worry about the cost of tests.

The finding implies, he said, that many people don't know about hereditary cancer syndromes and don't understand what is meant by genetic counseling and testing.

The "very important and excellent study" underscores the need to make people aware of genetic cancer syndromes, commented Beth Karlan, M.D., director of the Women's Cancer Research Institute at the University of California at Los Angeles.

"This was overwhelmingly a white, affluent population," Dr. Karlan said, "yet few were aware of any hereditary cancer syndrome."