When her surgeon at the breast-care center walked in with a nurse navigator, Kate Birdsall knew the news wouldn’t be good.
About a week before, she’d discovered a lump in her left breast. Within a week, she’d been whisked through a series of procedures culminating in a biopsy; she and her wife had gone to the breast-care center on a Thursday to hear the results.
“I knew, as I sat there and waited for my (wonderful) surgeon, that everything was about to change,” she explains via email to GO. “I pretty much knew from the get go that what they’d found was bad.”
She was diagnosed with an extremely aggressive cancer, stage IIA. The following Monday, she underwent a unilateral mastectomy. The surgery was followed by six rounds of chemotherapy and 30 days of radiation to her chest wall. After the chemo, she “couldn’t stand the asymmetry anymore” and had her right breast removed too. She was just 36.
Now in remission, Birdsall, an assistant professor with the Department of Writing, Rhetoric, and American Cultures at Michigan State University, can look back on the experience and count herself lucky. She had a surgeon who was supportive of her decision to undergo breast removal. Her medical team accepted her wife as her primary care-giver. She also had access to health insurance. “If not for my university benefits,” she writes, “the whole thing would have bankrupted us.”
Unfortunately, her story isn’t always typical for many LGBTQ+ persons diagnosed with breast cancer. Although we don’t think about breast cancer in terms of sexuality and gender identity, many sexual minority persons diagnosed with the disease are more likely to face barriers to care than their heterosexual and cisgender counterparts.
Although all women and those born biologically female — as well as many men, and those born biologically male — are susceptible to breast cancer, researchers agree that LGBTQ+ women are prone to increased risk factors. They are more likely to smoke and drink — behaviors that are linked to cancer development. They exhibit higher rates of obesity than heterosexual women and are more likely to forgo bearing children or bear children later in life, which are also linked to increased risk. They are also less likely to have access to health care or work jobs that don’t provide employee benefits.
Increased risk, however, doesn’t correlate to higher rates of breast cancer in LGBTQ+ women, although the reasons for this may speak to a problem with the health industry. According to Liz Margolies, founder and executive director of the National LGBT Cancer Network, the data is buried in cancer registries that don’t screen for sexual minority status. “While we can show with multiple studies that we have increased risks, and in many cases lower breast cancer screening rates,” she tells GO, “we can’t say definitively we have a greater incidence or prevalence of breast cancer because none of the cancer registries collect information about gender identity.” Such information is critical to understanding how, and why, cancer incidence and mortality rates may differ among demographics.
This silence around sexual and gender identity speaks to shortcomings in the medical field when it comes to recognizing the needs of sexual minority patients. A recent national survey of 149 oncologists conducted by researchers associated with the Moffitt Cancer Center found that although a high majority (95 percent) did report being comfortable with lesbian, gay, and bisexual patients, only 53.1 percent expressed confidence in the needs of LGB patients. Additionally, 34.3 percent didn’t think knowing a patient’s sexual orientation it was important.
The problem with this approach is that it may alienate sexual minority patients already uncomfortable being open and out with their medical practitioners. According to Margolies, “Many people who are out in all the rest of their lives leap back into the closet when it comes to cancer care. They feel like it’s alienating their health care provider.” Practitioners may also exclude caregivers who aren’t biological family from the treatment process. Additionally, she tells GO, “If they have support groups for caregivers of women with breast cancer, they are mainly filled with men. And lesbians wouldn’t necessarily feel comfort there.”
Even Birdsall, whose team was supportive, encountered similar moments of discomfort when navigating online support groups. “I wish I had found queer-specific online support groups while I was in active treatment,” she writes to GO. “The heteronormativity of otherwise immensely supportive online communities can be overwhelming.”
This heteronormativity can influence multiple aspects of breast cancer treatment and awareness. The pink ribbons, for example, may alienate those who don’t want to be associated with the traditionally gendered “feminine.” Even the idea of procuring a mammogram may come with a feminized stigma. Rachel Walker, an assistant professor at the University of Massachusetts, Amherst College of Nursing, tells GO that, “For many individuals, including trans, nonbinary, and gender-nonconforming folx, just going for a mammogram can be deeply stressful. There can be the fear of being misgendered, judged, or forced to come out to clinical staff.” Walker, who recently published a study on the experience of cisgender men screened in mammograms (The Breast Journal, September 20, 2019), also noted the locations of the procedure could be problematic. “Mammography centers are often located in women’s health clinics, some of which are very gendered.”
Another problematic aspect of breast cancer treatment is the pressure that doctors may put on patients who undergo mastectomies to have reconstructive surgery. In a literature review of the research on sexual minority women and breast cancer, Anne Mattingly, et al, noted that LGBTQ women “may perceive that health care professionals are not always considering sexual orientation when making recommendations for surgery or reconstruction.” Margolies of the Cancer Network agrees, telling GO that women — and particularly young women — are being pushed by their practitioners into having reconstructions although sexual minority women “are less likely to be defined by their breasts or feel that their sense of being female requires that they have breasts.”
In regards to recognizing and understanding sexual minority needs in breast cancer treatment, it’s difficult to tell if things are getting better or not. While some health centers are now collecting data for sexual minority status — as they do for other demographics — the Trump administration this May issued a final conscious rule that would effectively allow medical practitioners to refuse treatment on the grounds of religious objections. The issuance, which could be challenged in court, could force more LGBTQ+ patients back into the closet.
Still, as Walker says, sexual minorities can be resilient. “Yes, we know that marginalization of LGBTQ+ persons exposes many to discrimination, life stress, and other factors that can adversely affect health. But they also possess many strengths — sometimes even as a direct result of having faced such adversity.”
Ultimately, the most important thing sexual minority women and persons can do this National Breast Cancer Awareness Month — and any time of the year, really — is to get screened, if they can, despite any fears or misgivings. “I think as a community, we need to see taking care of our health as a political act,” says Margolies. “The deck is stacked against us and that we have to fight to stay strong and healthy.”
Advice we should all heed, for those of us who can. Our survival may literally depend on it.