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.”
According to health experts, many lesbians feel alienated by the health-care system, either because they cannot afford care or fear they will be treated insensitively. One study found heterosexual women get Pap smears every eight months, on average, while the average interval for lesbians was 21 months.
“Part of the problem for lesbians in getting good health care is economics,” says Deborah Openden, who directs a support group for gay women who have serious illnesses at the Los Angeles Shanti Foundation. “Lesbians do not have spouses who have additional health care benefits or better benefits. And lesbians may not have access to health care at all.
“But because they are not having sexual relations with men, there may be less of a perceived need to go and get checked. And we have generally not taken our own health needs seriously enough.”
Sally Vardon, a lesbian who was treated for breast cancer in 1989, says she has often wondered if the risk factors listed for certain diseases apply equally to lesbians.
“I think there is some denial among lesbians that we don’t get a disease because we’re not heterosexuals,” says Vardon, of Van Nuys. “I also think we struggle with being able to share enough with each other about what diseases we have.”
Lesbians, however, have been generous health activists and care-givers of others, experts point out. They have fought hard for greater awareness of AIDS and greater reproductive rights--both issues that do not effect them as much as other groups.
“For a long time, their energies have gone into general health advocacy,” Peters says. “And it’s time they got something back for themselves.”
But even with greater appreciation for their own health needs, many lesbians fear they will be rejected by physicians. One 1986 survey among San Diego doctors found 40% said they were sometimes or often uncomfortable providing care to gay or lesbian patients.
A survey of lesbians showed 40% feared they would receive inferior care if their doctors found out their sexual orientation. In another survey, 84% of lesbians said they were reluctant to seek care from a “non-empathethic” medical provider.
“Having to come out to physicians is one of the reasons that lesbians don’t get regular health care,” Openden says. “It’s so stress-provoking to go to a doctor you don’t know and have to come out.”
But several efforts are under way to create more awareness for lesbian health needs.
Advocacy groups have lobbied the National Cancer Institute to include lesbians as a separate category on cancer prevention studies. Not having children or having children after age 30 also increases the risk for endometrial and ovarian cancer. Rates of cervical and lung cancer might also be higher among lesbians, Haynes notes, because their smoking rates are higher and smoking is a risk factor for both diseases.
Meanwhile, in the new Office of Women’s Health at the National Institutes of Health, lesbians have been added to a list of special populations for which there is a need to conduct research.
In San Francisco, the American Assn. of Physicians for Human Rights, a national organization of gay physicians, has started the Lesbian Health Research Fund to study lesbian health issues, promote more sensitivity among doctors and educate lesbians about reducing their risks for disease.
Haynes and other health leaders advocate new approaches to encourage lesbians to seek regular health care. Mobile units providing mammography could be stationed at gay festivals, for example, and gay health organizations could begin keeping doctor referral lists.
Says June Peters, “Maybe health-care providers should start thinking about their own offices and whether this is a place where lesbians would want to come.”
Risk Factors for Breast Cancer
* Being a woman
* Getting older
* Family history of breast cancer
* Early age at menarche (onset of menstruation)
* Late age at menopause
* Never had children or late age at first birth
Source: American Cancer Society
