‘Negative experiences,’ lack of research impede cancer care in LGBTQ community
Upon receipt of a cancer diagnosis, bias and judgement from medical providers should not be a concern for patients.
However, research has shown that patients who identify as lesbian, gay, bisexual, transgender or queer (LGBTQ) regularly experience increased anxiety and fear discrimination in medical situations. LGBTQ cancer survivors consistently report lower satisfaction with medical care, and gay, bisexual and transgender men who survive cancer appear more likely to experience depression or relationship difficulties.
Barriers to care exist in these communities, as well.
Despite enactment of the Affordable Care Act and nationwide recognition of marriage equality, those who identify as LGBTQ are more likely than heterosexuals to lack health insurance, according to the American Cancer Society.
This may be of particular concern for cancer care. Although no specific data exist about the number of patients with cancer who identify as LGBTQ, studies suggest this population may be at increased risk for malignancy. A study published in Cancer showed gay men appeared more likely than heterosexual men to receive a cancer diagnosis (8.25% vs. 5.04%; P < .0001).
Further, data show gays and lesbians are more likely to report cancer-associated behaviors, such as smoking cigarettes, tanning, and consuming excessive alcohol and high-fat diets.
“We live in a fairly hetero-centric world,” Allison L. Diamant, MD, associate professor of general internal medicine and health services research at David Geffen School of Medicine at University of California, Los Angeles, told HemOnc Today. “The assumption by most providers — and not necessarily in a pejorative way — is that their patients are heterosexual. Educating doctors and trainees on the importance of asking questions about a patient’s sexual orientation, gender identity or sexual behavior should be key components of the patient interview when establishing care.”
HemOnc Today spoke with clinicians and researchers about the factors that influence cancer risk in the LGBTQ community, the importance of open communication about sexuality and gender identity between patients and their physicians, the issues faced by transgender patients seeking cancer care, and the need for improved and expanded cancer research in this patient population.
Although research that focuses on cancer in the LGBTQ community is limited, data suggest certain cancers may be more prevalent in these individuals.
Ulrike Boehmer, PhD, associate professor of community health sciences at Boston University’s School of Public Health, and colleagues conducted an ecological study — published in 2014 in BMJ Open — that used sexual orientation population data aggregated at the county level to determine its association with cancer incidence.
Among men, greater bisexual population density appeared linked to lower incidence of lung cancer and higher incidence of colorectal cancer. Among women, greater lesbian population density appeared associated with lower incidence of lung and colorectal cancers and higher incidence of breast cancer, whereas greater bisexual population density was linked to higher incidence of lung and colorectal cancers and lower incidence of breast cancer.
However, because SEER data and cancer registries do not collect information about sexual orientation, researchers concluded “it cannot be readily determined ... whether cancer is more prevalent among individuals with a sexual minority orientation.”
Any excess risk in the LGBTQ community may be driven by potentially actionable factors.
“Most cancers are linked to behavioral risks, such as smoking, obesity, alcohol consumption, poor diet or nutrition, and physical inactivity,” Boehmer told HemOnc Today. “From available population surveillance, we know that lesbians have a higher rate of obesity than straight women. We know that LGBTQ individuals smoke at much higher rates than straight counterparts. These are relevant to breast and lung cancers, so we can say that, at a population level, LGBTQ individuals carry a higher cancer risk.”
Gwendolyn P. Quinn, PhD, MS, and Matthew B. Schabath, PhD, MS —senior members at Moffitt Cancer Center and senior professors at Morsani College of Medicine at University of South Florida who have focused their research on cancer incidence in the LGBTQ community — agreed specific, alterable risk factors are common.
“The higher rates of smoking, obesity and excessive alcohol consumption seen in LGBTQ individuals compared with non-LGBTQ individuals may be due to the stigma and stress associated with sexual minority status in our society,” Quinn and Schabath said in a written statement provided to HemOnc Today. “Other factors, such as higher rates of indoor tanning or unprotected sex, may be attributable to social norms within the community.”
Sexual behaviors are another risk factor.
“We have very strong evidence for the association of gay men and anal cancer,” Diamant said. “This has to do with the transmission of HPV ... which can drive anal cancer. This transmission is particularly high among gay men who are HIV positive and who participate in anal-receptive intercourse.”
Overall, however, the risk factors may not be generalizable.
“Lesbians do tend to have higher rates of overweight or obesity, but these data vary,” Diamant said. “Women who identify as lesbian or gay do have a higher rate of heavy alcohol use and binge drinking, but when we look at the population overall, their risks are no higher than those of straight women with similar histories.”
Other factors associated with reduced cancer risk may not apply to the LGBTQ community.
“More lesbian women are having children now than perhaps before, but the rates of childbirth — especially before 30 years of age — that may protect from gynecologic cancers may not be there,” Diamant said. “If you haven’t had children, haven’t had delays to your menstrual cycle or do not have a history of oral contraceptive use — all of which may potentially reduce risk — an association might be there.”
Further, risk factors may be exacerbated due to underuse of preventive care and cancer screening in the LGBTQ community.
“There are medical myths that persist in the community and inhibit seeking medical care,” Quinn and Schabath said. “Some lesbian women believe that they do not need a pap smear because they don’t have sex with men. Transgender individuals may not identify with a biological part of their body that does not align with their identity.”
Fear of disclosure
Sexual minorities may self-limit their access to health care for reasons beyond misconceptions about risk.
Lack of health care use may be attributed largely to fears of ridicule, persecution or receipt of substandard care by unsympathetic providers, Boehmer said.
“Having a regular source of medical care and a trusting relationship with physicians are factors that are linked to better quality of care and adherence to physician recommendations,” Boehmer said. “There are indications that LGBTQ individuals are at a disadvantage. There is even evidence that some LGBTQ individuals who are open about their sexual or gender minority status do not share this with their physicians.”
In a study published in Journal of Psychosocial Oncology, Charles S. Kamen, PhD, MPH, assistant professor in the cancer control unit of the department of surgery at University of Rochester Medical Center, and Jennifer M. Jabson, PhD, MPH, found LGBTQ cancer survivors reported significantly lower rates of satisfaction with health care experiences (P < .002). These perceptions persisted even after researchers controlled for demographic and clinical variables — such as positive employment status, higher income and being on treatment — that appeared associated with higher satisfaction.
“There is fear associated with seeking care in the LGBTQ community, including fears of discrimination and ridicule, as well as an uncomfortable feeling in medical settings,” Quinn and Schabath said. “Fear of disclosing sexual orientation or gender identity status may prevent some patients from disclosing, which research suggests can lead to poorer perceptions of care”
However, many patients may think disclosing their identity could compromise their ability to receive quality cancer care.
“When LGBTQ people cannot bring their full selves into treatment, it limits their satisfaction,” Liz Margolies, LCSW, founder and executive director of The National LGBT Cancer Network, said in an interview. “I have had many LGBTQ individuals — people who have been ‘out’ for their entire adult lives — tell me that when they were diagnosed with cancer, and their only treatment option was at a religiously affiliated hospital, they jumped right back into the closet because they felt like their survival depended on it.”
However, choosing to hide sexual orientation or gender identity may intensify psychological distress already felt by those with cancer.
“Disclosure decisions are very stressful,” Kamen said. “The onus is on the patient to make the disclosure, and many LGBTQ patients worry that disclosing their identity will lead to discrimination and compromise their level of care. They may elect not to bring their same-sex partner to the clinic, which can cause further stress, as the patient is not using their social support system to cope with their cancer treatment.”
A lack of education may prevent oncologists and primary care physicians from fully understanding and anticipating the needs of LGBTQ patients.
“A lot of MDs receive only minimal training — if at all — on LGBTQ populations and their health issues while attending medical schools,” Boehmer said. “One obvious area where this potential disconnect exists is sexuality, as many cancer treatments have sexual implications and side effects. If oncologists or oncology teams discuss treatment assuming heterosexual vaginal intercourse, they miss the concerns of gay men with prostate cancer who may worry whether the recommended treatment will affect their ability to perform anal sex.”
The Fenway Institute — an interdisciplinary center for research, training, education and policy development that focuses on the needs of the LGBTQ community — and the National LGBT Cancer Network have developed training modules for health care providers to address this need.
“These types of educational modules and training programs are important for building comfort in providers,” Kamen said. “Feeling comfortable discussing sexuality and gender identity will allow providers to create a safe space for disclosure and to be respectful when such disclosures happen.”
Electronic health records do not provide a specific space for documenting sexual orientation or gender identity, which further complicates disclosure.
“Cancer involves dozens of providers, and patients talk about feeling anxiety each time they have to disclose their sexual orientation or gender identity to each new provider or before each new procedure,” Margolies said. “You have to come out dozens of times to dozens of people. There are so many people and so much decision-making on top of what is already a stressful, life-changing event.”
Providers often are left to choose whether to broach the subject.
“As a doctor, that question is important to me, but not everyone necessarily feels the same way,” Diamant said. “We need to train people that it is important. Asking about a patient’s sexual orientation is just as important as asking about their history of tobacco use or alcohol consumption.”
“In an ideal world, the forms would change, but we recommend, until and if they do, doctors use their facility’s forms differently,” Margolies said. “Ask people who they are. Ask them what they want to be called and who is important to them. If someone states that they are married, don’t assume they are married to someone of the opposite sex.”
Transgender cancer care
Transgender individuals may encounter unique issues when seeking cancer care.
Although transgender people do not identify with the sex assigned to them at birth, they still are at risk for medical conditions that affect their biological sex.
For example, transgender men still can be diagnosed with female breast or gynecologic cancers, and transgender women are susceptible to prostate cancer. Further, transgender women who elect not to have gender confirmation surgery may be at risk for testicular or penile cancers.
Screening disparities also may exist in this population.
“A transgender woman may not be offered a PSA test or a digital rectal exam to screen for prostate cancer,” Quinn and Schabath said. “A transgender man who has not had an oophorectomy may not be screened for ovarian cancer.”
Transgender individuals also may encounter other barriers to screening.
“Many breast care clinics are designed to cater to their predominantly female clientele,” Kamen said. “A transgender man going in for a mammogram may feel alienated by the ‘pinking’ of breast cancer screening and may, therefore, forgo screening procedures. The same is true of cervical or prostate screening for transgender women. It is important for providers to recommend and administer such screening in a competent and respectful fashion.”
Evan T. Taylor, MSW, and Mary K. Bryson, PhD, both of University of British Columbia, found these barriers also exist in the treatment of transgendered individuals for cancers typically associated with male or female sex. They conducted a study — published this year in LGBT Health — that reported on the experiences of 10 transsexual/transgender or gender nonconforming individuals diagnosed with breast or gynecologic cancers.
“The common designation of breast and/or gynecologic cancers as ‘women’s cancers’ and, relatedly, the ways that this designation is taken up and mobilized by cancer treatment contexts, influenced many of the ways the [transsexual/transgender] and gender-nonconforming people experienced their cancer health and care generally, and their identity as cancer patients more specifically,” Taylor and Bryson wrote. “Participants reported that they were highly aware of binary and essentialized discourses of gender, as these shape the organization of cancer treatment. When a clinic that provides breast or gynecologic cancer health services is de facto branded as a ‘women’s clinic,’ the treatment environment is not set up for [transsexual/transgender] and gender-nonconforming patients, nor is it welcoming.”
Real or perceived transphobia also affects decisions to seek medical care, Margolies said.
“Transgender patients have told me they were afraid their transphobic surgeon may not excise their entire tumor,” Margolies said. “Patients fear that a transphobic nurse may make them wait longer for their pain medication, or that they may deny access to a transgender patient’s partner or significant other.”
Taylor and Bryson found that many transgender patients reported feeling unwelcome in the waiting rooms of women’s health clinics, and that some were asked to wait in other waiting areas so as not to disturb the comfort of cisgender patients.
The National Transgender Discrimination Survey Report on Health and Health Care — conducted by the National Center for Transgender Equality and the National Gay and Lesbian Task Force and published in 2010 — showed that, of 7,000 people surveyed, 19% reported having been denied health care due to their gender identity or transgender or gender-nonconforming status. Twenty-eight percent reported they were subjected to harassment in medical settings, and 2% said they were victims of violence in doctor’s offices.
Further, Michael Irwig, MD, FACE, associate professor of medicine at George Washington University, surveyed practicing endocrinologists regarding transgender health care. His results — published this year in Endocrine Practice — showed that 15% of endocrinologists described themselves as “not at all comfortable” discussing gender identity, with 34% reporting they were “only slightly comfortable” with the topic. Only 20% said they felt “very comfortable” discussing gender or sexual identity with their patients.
Further, 58% of doctors reported feeling less comfortable treating transgender patients than cisgender patients. A combined 41% considered themselves to be either “somewhat competent” or “very competent” to provide transgender health care.
“A transgender person who has had a negative experience with a provider, or who has heard stories from friends about bad experiences, is going to be very reluctant to seek health care,” Quinn and Schabath said.
Education, understanding and empathy are needed to close the knowledge gap in transgender health care, they added.
“In unpublished research that we have conducted, which is currently under review, a majority of oncologists reported they believed they treated all of their patients the same, regardless of sexual orientation, gender identity or gender presentation,” Quinn and Schabath said. “We understand their logic, but the American Medical Association and other national organizations have published guidelines stating that treating all patients the same is a missed opportunity. We need to educate doctors and medical students about the importance of disclosure and understanding, and how simple things can improve the care they provide.”
‘Vital questions’ remain
There are many unanswered questions in the field of LGBTQ health care.
“We are trying to understand how LGBTQ individuals are experiencing cancer, what their needs are, and to identify subgroups among the population who do particularly poorly and have unmet medical needs,” Boehmer said. “This is an under-researched area, but the biggest task is to find ways of improving the cancer experiences of LGBTQ people.”
The fact that there are little data about LGBTQ populations and cancer is “frustrating” given the prevalence of cancer in the United States, Boehmer added.
“It is even more frustrating that the shortage of data and information about LGBTQ patients in relation to cancer mostly prevents us from focusing on subgroups in this population,” Boehmer said. “These are vital questions that need answers. How do LGBTQ patients who are also racial or ethnic minorities fair? How about patients who are immigrants, or who are poor? What role does age play — we do not know whether LGBTQ people are diagnosed at a younger or older age than heterosexuals. It is too easy to list all of the questions that haven’t been answered.”
However, research in this area has been difficult.
“Because sexual orientation data aren’t regularly collected, we rely on survey research, which has its own set of challenges,” Diamant said. “You have to get people to respond. You have to get people to pick up their telephones and talk to you for an hour.”
The specific lack of sexual orientation and gender identity information in databases is a real detriment to cancer research, experts said.
“The more information we have about the unique needs of patients with cancer who are LGBTQ, the more competent providers will be and the more comfortable patients will feel,” Kamen said. “However, we still don’t have good data on the actual prevalence of cancer in the LGBTQ community. Until we start systematically tracking sexual orientation and doing a better job of characterizing gender in national cancer registries, we won’t have a definitive answer about the end result.”
Still, there may be reason for optimism about the future of cancer care in the LGBTQ community.
When Kamen started his research that focused on LGBTQ cancer survivors and their caregivers, he anticipated having to recruit most patients from the community.
“I expected that it would be a question most oncologists wouldn’t ask,” Kamen said. “What I found instead was that many oncologists were my best sources of referral. The oncologists with whom I spoke knew their patients’ LGBTQ identities, had facilitated disclosure and were very respectful.
“Those are two of the most important factors in delivering culturally competent cancer care to LGBTQ patients: creating a safe space for discussion of sexuality and gender, and being respectful of differences,” he said. – by Cameron Kelsall
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For more information:
Ulrike Boehmer, PhD, can be reached at firstname.lastname@example.org.
Allison L. Diamant, MD, can be reached at email@example.com.
Charles S. Kamen, PhD, MPH, can be reached at firstname.lastname@example.org.
Liz Margolies, LCSW, can be reached at email@example.com.
Gwendolyn P. Quinn, PhD, MS, can be reached at firstname.lastname@example.org.
Matthew B. Schabath, PhD, MS, can be reached at email@example.com.
Disclosure: Kamen reports grant support from the NCI. Boehmer, Diamant, Margolies, Quinn and Schabath report no relevant financial disclosures.
Should lesbians and other women in the LGBTQ community initiate mammography at an earlier age than heterosexual women?
Lesbians should consult with their doctors early in adulthood about the proper time to initiate mammograms.
The general “rule” is that if a lesbian has a family maternal history of breast cancer, she should begin having annual mammograms at age 40 years. However, it is important that all lesbians begin seeing a doctor in their 20s for other cancer screening tests and have clinical breast exams and earlier mammograms if necessary.
The biggest challenge now is to help lesbians feel comfortable in a welcoming, safe clinical setting where LGBTQ-friendly providers are aware of the special needs and concerns that lesbians have with regard to breast health and breast cancer. The information on breast cancer in lesbians is limited and sometimes contradictory, and the fact that large national cancer registries and surveys have not collected sexual orientation data has left lesbians invisible.
Although we know there is no genetic difference between lesbians and heterosexual women, research has indicated that lesbians may have a cluster of risk factors that make them more vulnerable to the possibility of having breast cancer. Those risks are largely a result of individual behaviors and fears based on living with homophobia and discrimination that evolved into a distrust of health care providers. Thus, lesbian mammography screening rates are lower due to this feeling of discrimination and distrust. Results of a statewide study we conducted in California that is not yet published showed many lesbian women also did not believe that breast cancer is a significant risk for them.
The most mentioned breast cancer risk factors for lesbians include cigarette smoking, alcohol use, obesity, and late or nonexistent pregnancy, which may offer some protection against breast cancer. Data suggest that lesbians tend to smoke cigarettes at a significantly higher rate, consume more alcohol, are more likely to be overweight and are less likely to have biological children before aged 30 years than heterosexual women.
Lesbians would benefit from consulting with their doctors about their risk factors and seeking assistance in developing healthier behaviors early in young adulthood while, at the same, discussing when they should begin to have mammograms. Family medical history would, obviously, contribute to the discussion, as well as the individual’s levels of stress experienced in her daily life. Working together, the health care provider and the lesbian patient can decide the appropriate age to begin mammography screening.
However, there are bigger issues that need to be addressed. More funding and more studies are needed to better understand why mammography testing is low for lesbians and whether the cited risk factors exist among lesbians in all socioeconomic and geographic areas. Clearly, more education and information about breast cancer and mammograms needs to be provided to lesbians. Most importantly, there is a need for more lesbian-friendly health care providers who instill trust, as well as for clinics where lesbians feel safe and comfortable.
Marlene von Friederichs-Fitzwater, MPH, PhD, is professor emeritus of communication studies at California State University, Sacramento. She recently retired as associate professor of behavioral health at University of California Davis School of Medicine, where she also served as director of the UC Davis Comprehensive Cancer Center’s Outreach Research and Education Program. She can be reached at firstname.lastname@example.org. Disclosure: von Friederichs-Fitzwater reports no relevant financial disclosures.
It is impossible to a give a “one-size-fits-all” recommendation regarding mammography screening in the LGBTQ community because of its heterogeneity.
It is important to distinguish sexual orientations (gay, lesbianism and bisexuality) from sex and gender identity. In framing recommendations, it is essential to assess the individual risk factors, such as family history for breast cancer as well as hormonal status and organ inventory, which may influence risk.
Mammography screening recommendations for cisgender women are evidence-based, with many randomized controlled trials and observational studies supporting guidelines provided by professional organizations. However, other than anecdotal reports, there are no systematic data to support mammography screening for transgender women. Breast cancer is rare in cisgender men, and it appears that the cancer rate in transgender women who take hormones to maintain female phenotype is not significantly higher than in cisgender men.
For transgender women who have undergone 5 years of hormone therapy, I agree with professional groups that advocate annual screening mammography, starting at the age of 50 years for this group. Because this recommendation is not based on data, it is vital that screening mammography in transgender women be performed in the context of a registry, so they can be longitudinally followed to assess breast cancer incidence, means of cancer detection and outcome. We have established such a prospective registry at Mount Sinai and are seeking to bring it to other centers, and to outreach directly to the community.
The screening issue is more complicated for transgender men. Transgender men are individuals who were assigned to the female sex at birth but who have transitioned to living as men. Many — but not all — transgender men undergo breast removal, which is often called “top surgery.” Thus, for transgender men, screening should be based on whether the individual has elected to have his breasts removed. Transgender men who have received top surgery are recommended to have an annual clinical chest exam. There are no data to support screening mammography in this group. Those who have elected not to have surgical breast removal should follow established screening guidelines for cisgender women.
Although some researchers in LGBTQ health care have suggested that certain personal and environmental risk factors — such as higher smoking rates or alcohol consumption, lower use of oral contraceptives, and lower likelihood of giving birth or breastfeeding — may be higher among lesbians and bisexual women, there are no reliable data about breast cancer risk compared with heterosexual women. There is no reason to believe that lesbians and bisexuals would screen differently even if they were at higher relative risk. Therefore, I would recommend that these women follow the established guidelines for mammography screening as set by professional organizations.
Finally, because the LGBTQ group has experienced disparities in access to health care, including research, it is incumbent on us to commit to population-based studies to inform the vital discussion of individual risk factors and cancer screening in this community.
Emily B. Sonnenblick, MD, is a diagnostic breast radiologist and assistant professor of radiology at Mount Sinai’s Icahn School of Medicine. She is principal investigator of the Transgender Female Imaging Registry (TransFIR) at Mount Sinai. Disclosure: Sonnenblick reports no relevant financial disclosures.