The term “sexual and gender minorities” encompasses people whose sexual orientation, gender identity and expression, or reproductive development varies from traditional, societal, cultural, or physiologic norms1 and includes lesbian, gay, bisexual, transgender, and queer (LGBTQ) people. More than 3 million people in the United States aged 55 and older identify as sexual and gender minorities, and this number is expected to double in the next 2 decades as the baby-boom generation retires.2 With the aging of the U.S. population, the incidence of cancer is on the rise.
Koshy Alexander, MD
Smita C. Banerjee, PhD
Cancer is diagnosed at a higher rate (53%), accounts for a higher percentage of survivors (59%), and results in more deaths among individuals 65 years and older (68%).3 In older sexual and gender minorities, some cancers are diagnosed at higher rates than in the general population, in part because of higher rates of smoking, higher rates of obesity, and lower rates of cancer screening.4-6 A 2015 review of the literature highlighted seven cancer sites that may disproportionately affect this patient population: anal, breast, cervical, colorectal, endometrial, lung, and prostate.6 Despite being an underserved population, few studies have explored the health-care concerns and needs of sexual and gender minorities in the context of cancer.
Numerous controversies and debates have taken place through the history of psychopathology with regard to sexual orientation and gender identity.7 Homosexuality was removed from the Diagnostic and Statistical Manual (DSM) as a mental disorder in 1973 by the American Psychiatric Association. Gender identity disorder was removed from DSM but replaced by gender dysphoria in 2012.
Although “science” is taking time to progress, there has been a shift in the trend by the younger generations in viewing sexual orientation and gender identity as being more fluid than binary. According to a survey commissioned by the LGBTQ advocacy organization GLAAD,8 20% of millennials identify as something other than strictly straight and cisgender (individuals whose gender is in line with the sex they were assigned at birth), compared with 7% of baby boomers.
Stuart M. Lichtman, MD
Discrimination: Covert and Overt
Older sexual and gender minorities may face dual discrimination due to their age and their sexual orientation and gender identity. They often experience victimization based on their perceived or actual sexual orientation and gender identity. In an AARP report from March 2018,9 half (52%) of sexual and gender minorities (aged 45–75) said they fear discrimination in health care as they age. One-third of older sexual and gender minorities in the United States were somewhat worried about having to hide their identity to have access to suitable housing.
Although open discrimination and overt bias may be waning within many regions of the United States, nonconscious bias continues to shape attitudes, beliefs, and behavior. Sexual and gender minorities experience subtle forms of discrimination, also known as microaggressions. Microaggressions are intentional or unintentional—verbal, nonverbal, behavioral, or environmental—indignities that communicate hostile, derogatory, or negative connotations about a particular culture.10,11 Common sexual and gender minorities–related microaggressions include assumptions that one is married to a person of the opposite sex; being asked, based on this assumption, what one’s husband’s or wife’s name is; being asked to complete demographic forms that fail to capture the relationship possibilities of gay persons, such as “partner” or “domestic partner”; and having one’s life partner referred to as a “friend.”12
Where Are Older Sexual and Gender Minorites With Cancer?
Lack of disclosure to providers significantly decreases the likelihood that appropriate health services are recommended to patients.13 Given that homosexuality was pathologized and considered to be a mental illness until 1973, many gay older adults recall experiencing discrimination in the health-care system and, as such, continue to harbor deep distrust and fear toward its professionals.14 Disclosure of sexual orientation and gender identity is associated with several patient-related and provider-related characteristics.
Studies show that patients commonly perceived individualized care as a sexual orientation and gender identity disclosure benefit, whereas providers perceived improved patient-provider interaction as the main benefit. On the flip side, bias or discrimination is the risk most frequently mentioned by patients, whereas providers fear patient discomfort or offense most frequently.15 In the same study, 80% of providers believed that collecting sexual orientation data would offend patients; however, just 11% of patients reported that they would be offended. A 2017 integrative review revealed that, in most cases, patients are willing to answer routine questions about their sexual orientation in the health-care setting and perceive them as important questions to ask.16
Data on sexual orientation and gender identity are not included in prominent cancer registries, such as the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI),17 the nation’s leading source of information on cancer incidence, mortality, and survival. Furthermore, despite recommendations by the National Academy of Medicine, the U.S. Department of Health and Human Services, and the Joint Commission, data on sexual orientation and gender identity are not routinely collected in health-care settings,4,18,19 including at NCI-designated comprehensive cancer centers.20 Of the 626 hospitals who chose to have their LGBT practices rated by the Human Rights Campaign’s 2018 Healthcare Equality Index, just 37% had an explicit way to capture a patient’s sexual orientation in their electronic health records and 56% offered a way to capture that patients’ gender identity differed from the sex they were assigned at birth.21
Why Know a Patient’s Sexual Orientation and Gender Identity?
Older sexual and gender minorities may be disproportionately affected by poverty as well as physical and mental health conditions due to a lifetime of unique stressors associated with being a minority.22 The risk of cardiovascular disease and obesity is higher among older lesbians and bisexual women than for older heterosexual women.23 Older LGBT adults have a higher risk of disability, smoking, and excessive drinking than heterosexual adults.24 The rates of psychiatric disorders such as depression, anxiety, substance abuse, and suicide are all higher in sexual and gender minorities than in the general population.25
“More than 3 million people in the United States aged 55 and older identify as sexual and gender minorities, and this number is expected to double in the next 2 decades.”— Koshy Alexander, MD, and Smita C. Banerjee, PhD
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Population estimates suggest that one-third to one-half of older gay and bisexual men live alone, without adequate services or supports. Many older sexual and gender minorities have created close, intimate families of choice, comprising loved ones, including current and former partners and friends.23 Hence, their social support structure may look very different from the traditional vertical structure, of children and grandchildren supporting heterosexual older patients while they undergo cancer treatments. During the treatment trajectory, if subacute rehabilitation or long-term care is considered, it is important to remember that they may be more vulnerable to neglect and mistreatment in aging care facilities.22
Older sexual and gender minorities may fear homophobia and marginalization in long-term care because many of them have encountered it in the past when accessing mainstream care. Similarly, caregivers of older LGBT adults have reported apprehension around accessing services such as home care supports.14 All these factors make caring for older sexual and gender minorities with cancer different and challenging.
Knowing patients’ sexual orientation allows for a shift in communication and may help providers avoid heteronormative assumptions and language used in the context of providing care, as experienced by sexual and gender minorities who survived colorectal cancer in a 2017 study.26 Additionally, the absence of data on cancer incidence impedes research and policy development, awareness and activation of sexual and gender minorities, and interventions to address cancer disparities.17
Is It Enough to Provide the Same Care to All Patients?
Hospital intake forms often ask solely about legal marital status, obscuring or rejecting same-sex nonlegal partnerships. Providers may not then know who to invite into their office for important meetings about diagnosis and treatment decisions. Many sexual and gender minorities who survive cancer report that their partners were not permitted in the emergency room with them, which left the patients alone and frightened.27
Oncologists and social workers rarely address adequately the impact of sexuality on sexual and gender minorities. For instance, after treatment for prostate cancer, many experts say that most men can still have an erection “good enough for intercourse.” This is not a meaningful measure for a gay man, who requires a stronger erection for anal sex or needs to know if he can safely have receptive anal sex. Even when the patient is brave enough to ask, the oncologist is often ill equipped to answer.27
Support groups for survivors of cancer and caregivers also pose extra challenges for sexual and gender minorities. For instance, the partner of a lesbian breast cancer survivor may be the only woman in her caregiver group. A 2018 study showed that sexual orientation and gender identity influences participation in breast cancer support groups and that lesbian survivors of breast cancer would prefer lesbian-specific groups for themselves and their partners, where they would be more comfortable discussing the impact of treatment on their intimate relationships.28 Similarly, the gay male partner of a prostate cancer survivor will, most likely, be the sole man in his caregiver group. This greatly diminishes the likelihood of receiving knowledgeable support for some of the stresses and sexual difficulties they may have.27
Gender minority patients with cancer also have special needs that must be addressed. As cross-sex hormones administered for the purposes of gender affirmation may be delivered at high doses and over a period of decades, the carcinogenicity of hormonal therapy in transgender people is an area of considerable concern.29 In transgender women, the prostate is not removed during gender-affirmation surgery. Whereas androgen deprivation through antiandrogens or orchiectomy is expected to protect against prostate cancer, the role of exogenous estrogen also should be considered. It is possible that prostate cancers in transgender women are more aggressive because these malignancies develop despite low levels of testosterone and high levels of estrogen.29 A 2019 Dutch study found an increased risk of breast cancer in transgender women in the Netherlands compared with Dutch cisgender men. In both transgender women and transgender men, the risk of breast cancer was lower than in Dutch cisgender women.30
Barriers exist at every step in the care of older sexual and gender minorities who have cancer—from their acceptance of cancer screening, treatment discussions, support during treatment, utilization of long-term care services, and their involvement in cancer and survivorship support groups. Normalization of the identities of sexual and gender minorities and the continued invisibility of these patients may contribute to the lack of understanding of the specific needs of this patient population and may lead cancer care providers to assume that existing, heteronormative social supports are enough to meet the needs of these patients with cancer.28
The first major step is to make this invisible population visible by asking for and collecting data on sexual orientation and gender identity. This can be achieved by providing an affirmative environment for all patients, making them comfortable and welcome. Bias (both overt and nonconscious), microaggressions, and the lack of availability of inclusive literature warrant attention. The impact on sexual dysfunction after cancer treatment is unique in sexual minorities and should be addressed as such. In addition, the physical and psychological impact caused by the need to stop gender-affirming hormone treatments in older transgender patients as part of their cancer treatment when necessary should be assessed and discussed prior to initiation of treatment. Screening guidelines also should be established in this population.
Providers who assume patients to be cisgender heterosexuals or believe in providing the “same care to all” may be providing suboptimal care to older sexual and gender minorities with cancer. All patients should be treated the same, but only when everyone is at the same starting point. Until then, older sexual and gender minorities with cancer should be treated differently to meet their unique needs.
Koshy Alexander, MD, is a geriatric cancers specialist on the Geriatrics Service at Memorial Sloan Kettering Cancer Center in New York. Smita C. Banerjee, PhD, is a behavioral scientist in the Department of Psychiatry and Behavioral Science at Memorial Sloan Kettering Cancer Center in New York.
DISCLOSURE: Drs. Alexander and Banerjee reported no conflicts of interest.
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