When Karl Surkan, a transgender man, was diagnosed with breast cancer in 2013, he was seriously considering transitioning from female to male. A few years earlier, after having two children and breastfeeding, he had put off making the decision. But when he received the cancer diagnosis, and with breastfeeding behind him, he was ready to move forward.
“This seemed to be the moment to transition, because having a mastectomy was a treatment option,” says Surkan, who is 48 and was treated at Dana-Farber Cancer Institute in Boston.
Surkan was fortunate. The doctors found the tiny, invasive tumor, which was estrogen-receptor positive, at stage 1. He opted for a double mastectomy, and was then prescribed an estrogen-reducing aromatase inhibitor. The intensity of the side effects he experienced helped determine his next steps.
“I had extreme hot flashes and significant sleep loss, problems that were not remedied by taking antidepressants or through less conventional treatments, like acupuncture,” Surkan says. “I asked my doctors about taking testosterone to address these issues, but they told me they didn’t know if it would cause the cancer to recur, largely because little research has been done on the impact of testosterone on breast cancer survivors.”
Despite the lack of evidence, Surkan forged ahead. So far, the outcomes have been positive. He can now sleep better, and the testosterone has facilitated his transition. His story, however, highlights two of the many problems facing lesbian, gay, bisexual, transgender and queer/questioning (LBGTQ) people who receive a cancer diagnosis. Their providers may not know how to resolve complex and delicate medical issues like those Surkan faced, and the research simply isn’t there to guide decision-making.
However, over the past few years, advocacy groups, health centers and research institutions have become more aware of the unique concerns of LGBTQ cancer patients. As a result, some steps have been taken to make changes to the health care system, with the goal of ensuring that LGBTQ cancer patients receive culturally sensitive care.
LGBTQ COMMUNITY AT GREATER RISK FOR CANCER
Liz Margolies, founder and director of the National LGBT Cancer Network, has been looking at how cancer affects the LGBTQ community for many years. Her challenge has been twofold: Persuade the cancer community to care about LGBTQ cancer patients while also making the LGBTQ community more aware of the importance of addressing cancer head-on as a significant health problem.
“Cancer is hard for everyone, but the LGBTQ community faces added challenges,” says Margolies. “The stress of living as a sexual minority can result in a downhill spiral from discrimination. Many people have trouble getting a job, especially if they are gender-nonconforming. As a result, they have an overall lower quality of life and have trouble finding welcoming health care providers. The stress of living as a sexual and/ or gender minority leads many in the community to smoke and drink, both of which raise the risk for cancer.”
A study published in the Journal of Community Health in 2017 further highlights the risk factors present in the LGBTQ community. The study stemmed from data from the 2014- 2015 Behavioral Risk Factor Surveillance System (BRFSS), a national telephone survey conducted annually in conjunction with the Centers for Disease Control and Prevention. Based on answers to questions about sexual orientation gathered from 27 states, both gay and bisexual men reported higher levels of mental distress and depression than heterosexual men, as did lesbian and bisexual women in comparison to heterosexual women. Furthermore, the study confirmed Margolies’ thoughts on behavioral issues, indicating that sexual minority populations tend to have higher rates not only of smoking and drinking, but also of obesity — all risk factors for developing certain kinds of cancer.
Other studies indicate that rates of breast, lung and colorectal cancers are higher for lesbian and bisexual women than for heterosexual women. Gay men, including those who are HIV-positive, are also at higher risk for some kinds of cancer, including anal cancer, which is relatively rare in the general population.
“Since the advent of antiretroviral medications, we don’t see too many cases of classic HIV-related cancers, like Kaposi sarcoma, but the increased risk for anal cancer may be due to the human papillomavirus (HPV) and a compromised immune system,” says Sean Cahill, director of policy research at the Fenway Institute in Boston, a center for research, training, education and policy development focused on global health issues. “For this reason, we encourage anal screening, especially for older men.”
Health screening is an important issue for all members of this community. Lesbians, bisexual women and transgender men have lower screening rates for both breast and cervical cancer compared to heterosexual women. For example, research indicates these groups are four to 10 times less likely to get a Pap test than heterosexual women, according to Cahill.
What is behind this discrepancy? “The underlying reason for these lower screening rates may be the result of the difficulty lesbians and bisexual women have in finding providers they feel comfortable with, combined with lower rates of insurance coverage,” explains Cahill. “Transgender men have an even harder time. They may be uncomfortable disclosing their status, so their providers may not even know what screenings to suggest.”
Margolies agrees, adding that, according to a country-wide survey conducted by the National LGBT Cancer Network, many patients are so worried about alienating their health care providers when a disease is life threatening that “they jumped back into the closet after receiving a cancer diagnosis. They were worried that a homophobic nurse would make them wait longer for pain medication. In many instances, LGBTQ patients simply don’t feel safe revealing who they are.”
EARLY SIGNS OF CHANGE
Although correcting the health disparities that members of the LGBTQ community experience has been a slow process, there are signs of growing awareness of the issues, and some steps have been taken to address them. The passage of the Affordable Care Act gave more people access to insurance and health care, although now there is uncertainty about the status of this law. A groundbreaking 2011 report by The Institute of Medicine, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” laid the groundwork for greater equity in serving the LGBTQ community. Since then, a few large medical institutions have developed programs to improve care for this population.
For example, Penn Medicine, the University of Pennsylvania Health System, started a multifaceted program in 2013 called Penn Medicine for LGBT Health, which strives to provide resources to LGBTQ patients. In addition, providers and staff are trained to become more aware of the needs of these patients and sensitive to barriers that may prevent members of these populations from seeking care. “Our goal is to create an open and welcoming medical center for everyone,” says Rebecca Hirsh, M.D., associate director of the Penn Medicine Program for LGBT Health.
“If a patient’s first encounter walking in the door is negative, then they are not going to be comfortable seeking care. Cancer patients come to the hospital with a high level of anxiety and fear at baseline, so it’s our responsibility to ensure that all our LGBTQ patients receive the courtesy and respect they deserve.”
About a year ago, the program added a patient advocacy component for transgender patients, whom it recognized as having historically negative outcomes in the health care system. “This population has higher rates of extreme poverty and is less likely to have insurance,” says Hirsh. “We have trained advocates to help them navigate our complex health care system. The program is designed to make them feel safe.”
A theme running through many programs is cultural competency training for providers. This training can take different forms. The Fenway Institute has trained about one-third of U.S. health centers in LGBT cultural competency, along with providing technical assistance and trainings to several major city, county and state health departments across the country. The National LGBT Cancer Network has developed a cultural competency training program that can be tailored to meet the needs of a specific organization or health care center. The presentations provide relevant information, as well as tools that health care professionals can use to make LGBTQ patients feel more comfortable.
Memorial Sloan Kettering Cancer Center (MSK), through its Employee Resource Network, also has a program specifically geared to LGBTQ employees, patients, caregivers and community partners. Under the direction of Nelson Sanchez, M.D., an urgentcare physician, the network is about to launch a series of training videos to educate staff about LGBT community terminology, health disparities and clinical communication skills.
MSK is also updating its electronic medical records, asking patients to self-report about their status. With this information, staff will be better able to identify this population and conduct assessments of patients’ clinical care.
In fact, collecting more robust data about the LGBTQ community is a goal of many advocates and is an area of focus for Cahill of the Fenway Institute. “Many surveillance programs, which are designed to assess environmental and behavioral risk factors and quality of care so that disparities can be detected, do not collect data about sexual orientation and gender identity,” explains Cahill. “This makes it extremely difficult to accurately determine cancer incidence and mortality” within this group.
Even at the level of an individual provider’s office, strategies can be put into place that can put LGBTQ patients at ease. “Intake forms can be modernized so that they ask about significant others and spouses in more inclusive ways,” notes William Goeren, M.S.W., OSW-C, LCSW-R, director of clinical programs at CancerCare, a patient advocacy group based in New York City.
“Having anti-discrimination policies posted in the waiting room also signals to the LGBTQ patient that he or she is welcome in the practice.”
Many of these concerns have come to the attention of the American Society of Clinical Oncology (ASCO), which released a position paper in April 2017 on strategies for improving cancer care for people the organizations describes as sexual and gender minority patients. The position paper calls for improved patient education and support, more robust cultural competency training, more complete quality-ofcare metrics that include information about sexual orientation and gender, and increased data collection.
“We see this as the first step in addressing this issue,” says Jennifer Griggs, M.D., M.P.H., a professor in the Department of Internal Medicine, Hematology/Oncology Division at the University of Michigan and the statement’s lead author. “We will start our work with patients by helping to find doctors with whom they can build a comfortable relationship. Next, we’ll work toward getting providers up to speed by creating an online cultural competency training module, with the goal of showing them how to create a safe environment for these patients.”
“My dream is to require cultural competency training for all health care professionals before they are credentialed,” continues Griggs. “We can all do better.”