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Cancer and the 'Invisible Population' : Health: A cluster of factors may put lesbians at high risk, but more research is needed, one researcher says, adding: 'The whole issue of lesbian health has been nonexistent.'


When Dr. Suzanne Haynes was asked to lecture on the risk of breast cancer among lesbians, she did what a good researcher always does first: She looked for research already done on the topic.

She found nothing.

Not only that, but Haynes also found no studies on risk factors for any disease among lesbians.

In health literature, she says, lesbians are "the invisible population."

So Haynes, chief of the health education section at the National Cancer Institute in Washington, did the only other thing she could: She collected surveys on lesbians that asked about risk factors for breast cancer. And what she found has given Haynes and lesbian activists ample reason to pursue long-overdue studies on lesbian health.

Haynes concluded that the lifetime risk for developing breast cancer for lesbians over age 50 may be two to three times higher than among women in general.

"There is this big cluster of risk factors among lesbians, which means they need special attention," she says.

The theory, though preliminary, that breast cancer rates may be higher among lesbians is still alarming because of the overall rate of breast cancer. As a whole, American women have a one in eight chance of developing the disease.

Haynes' analysis, presented last summer at the annual meeting of the National Lesbian and Gay Health Foundation, has provoked two questions in the lesbian community: How should research to establish the rate of breast cancer and other diseases among lesbians be conducted? And what can be done to improve general health practices among gay women?

"The whole issue of lesbian health has been nonexistent," Haynes says. "This is one of the first instances that I'm aware of where the risk of any disease has been identified in the lesbian population. It's been a silent issue."

Not having children, or having them after age 30, is one risk factor for breast cancer for all women. And it is one that occurs in 70% of lesbians, according to Haynes' analysis.

Alcohol use was another risk factor she found prevalent among lesbians, with surveys showing 9.2% of lesbians over age 40 were heavy drinkers compared to 2.4% of women in the general population.

But while these risk factors infer a possible higher rate of breast cancer among lesbians, studies are needed to determine the actual rate, says Dr. Ed Sondik, deputy director of the National Cancer Institute's division of cancer prevention and control.

"There is no evidence that being a lesbian intrinsically increases the risk," Sondik says. "And by no means do all lesbians have these risk factors. These risks are going to vary highly among individuals."

Moreover, risk factors, while sometimes significant, play only a limited role in the development of cancer. Three-quarters of all women who get breast cancer have no risk factors other than being a woman. (Although men can get breast cancer, cases are rare.) Breast cancer is also far more prevalent among women over 40; those under 40 who develop the disease are thought to have a strong genetic predisposition to it.

The risk of breast cancer among younger gay women also may be much lower than what Haynes' analysis suggests, says June Peters, a cancer risk counselor at Long Beach Memorial Breast Center.

"The risk factors for breast cancer are not certain," she says. "And surveys (of lesbians) from the '80s do not necessarily reflect the same demographics you'd see today. For example, there is a lot more awareness about alcoholism now."

Younger lesbians also are having children more than lesbians of a generation ago. (No one knows why having a child, especially before age 30, lowers the risk of breast cancer, although several theories revolve around the changing hormone levels during pregnancy and lactation.)

Peters is concerned that targeting the breast cancer risk among lesbians may create a negative image of lesbianism as being unhealthy.

"If you target the group, then there's the stigma," Peters says, "whereas if you target individual risk factors, then we're not putting the emphasis on changing (the group)."

Still, Haynes' analysis is more evidence for various health organizations seeking research and attention for lesbian health issues. Surveys also show that lesbians are far less likely than heterosexual women to seek regular health care, a major factor contributing to the early identification and survival of diseases like breast cancer. Haynes found that 35% to 45% of lesbians don't get regular gynecological care, for example. Another study showed that 58% of lesbians seek gynecological care only when a problem occurs.

"People may say, 'Well, these risk factors can be applied to any woman, so why single out lesbians?' " Haynes says. "But there is no other population of women where you have 70% not bearing children and also not seeking regular health care. To say it's a disease all women can get truly trivializes these special circumstances."

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