“Sex Can Be a Great Medicine”: Sexual Health in Oncology Care for Sexual and Gender Minority Cancer Patients

Abstract

Purpose of review:

Until recently, sexual and gender minority (SGM) people have been largely invisible in health care and health services research. However, understanding the needs and experiences of SGM cancer patients is critical to providing high-quality care, including needs and experiences related to sexual health. In this narrative review, we highlight that the literature on sexual health for SGM people with cancer is lacking, summarize existing literature on disparities affecting SGM patients with cancer, and discuss factors associated with these disparities. We conclude with recommendations and suggestions for future research in this area.

Recent Findings:

Emerging evidence suggests that SGM people are at a higher risk for breast, cervical, endometrial, HPV-related, and lung cancers, as well as poor cancer outcomes, due to behavioral risk factors and health care system factors (e.g. lower access to health care insurance, discrimination in non-affirming care settings, negative health care interactions with providers). Additional research suggests that lack of clear guidelines for cancer screening in SGM patients, particularly for transgender and gender diverse patients, negatively impacts cancer screening uptake among SGM people. A growing number of studies have suggested greater sexual challenges following cancer treatment for sexual minority men with prostate cancer, while other studies highlight positive outcomes for sexual minority women following cancer treatment, such as benefit finding and resilience. Research on transgender and gender diverse patients is lacking.

Summary:

Collection of sexual orientation and gender identity data across clinical enterprises and population-based surveys, mandatory health care provider training on cultural and clinical competency with SGM patients, and additional research inclusive of and focused on SGM cancer patients are key strategies to advance evidence-based clinical cancer care for diverse SGM populations.

Introduction

Between 530,000 and 1,300,000 sexual and gender minority (SGM) cancer patients are estimated to live in the United States [1,2]. An exact denominator is difficult to establish, as cancer registries (such as the Surveillance, Epidemiology, and End Results, or SEER registry), national databases, and epidemiological surveys do not routinely collect information on sexual orientation and gender identity (SOGI) [3]. SOGI data are also inconsistently assessed by oncology practices [4]. When SOGI data are collected, very often they are not collected in accordance with emerging best practices (many of which have yet to be validated), and they are infrequently documented in discrete, searchable fields in Electronic Medical Records (EMRs) [5–7]. Lack of routine SOGI data collection limits the ability of researchers to assess links between SOGI, cancer prevalence, and cancer outcomes. As a result, SGM patients have been invisible in oncology research and clinics for decades [8]. Only recently have SGM cancer patients been designated as a group experiencing cancer health disparities and become the target of specific oncology research and clinical attention [9,10].

The term SGM encompasses lesbian, gay, bisexual/pansexual, asexual, transgender, gender diverse, and intersex identities. This umbrella term may also include other nomenclature that describes people who partner romantically or intimately with others of the same gender, those whose gender identity differs from their sex assigned at birth, and/or those whose sexual orientation, gender expression, or reproductive development differs from assumed societal and cultural norms. The parallel to “sexual minority” is “heterosexual,” encompassing those who partner romantically or intimately with others of the opposite gender. The parallel to “gender minority” is “cisgender,” those whose gender identities match their sex assigned at birth. When discussing SGM disparities, it is important to remember that SGM individuals come from every nationality, religion, racial and ethnic group, linguistic and cultural background, level of socioeconomic status, and level of ability/disability. Consideration of the intersection of these various sociodemographic categories with SGM identity is paramount in order to optimize health and health care for SGM people [11].

Purpose and Methods

Understanding SGM cancer care experiences is critical to providing high-quality care, including attention to the sexual health experiences of SGM cancer patients. To better define the scope of this issue, we organized a narrative review of the literature, summarizing critical scientific pieces written about SGM health disparities, SGM cancer care experiences, and sexual functioning among SGM cancer patients.[12] We argue on the basis of this review that the literature on sexual health for SGM people with cancer is lacking. We also briefly summarize factors associated with disparities affecting SGM patients with cancer. We conclude with recommendations and suggestions for future research in this area.

Overview of SGM Cancer Disparities

A systematic review of cancer prevalence among SGM populations identified seven cancers that were more likely to occur in these groups [13]. Breast, cervical, and endometrial cancers were shown to be more prevalent among cisgender lesbian women than cisgender heterosexual women. Anal cancer rates were shown to be higher among cisgender gay men or men who have sex with men than cisgender heterosexual men. Several studies from this review suggested an association between low HPV vaccine rates among males in general and the likelihood of HPV-associated anal cancers among cisgender sexual minority men. Risk for HPV infection and subsequent anal cancer is specifically more prevalent among Black and Latino cisgender sexual minority men [14]. Colorectal cancer risk among SGM populations was similar to cisgender heterosexual people except in the case of bisexual cisgender men, who had slightly increased risk. Lung cancer rates were higher among gay and bisexual cisgender men. Prostate cancer was shown to be lower among HIV+ gay and bisexual men but tempered with the fact that screening rates for cancers are also low among many HIV+ populations. Population-based samples from Denmark and California found that cisgender sexual minority men were approximately twice as likely to be diagnosed with cancer when looking across cancer types as heterosexual men [15,16].

Reasons for heightened risk of certain cancers among SGM people are not fully understood. Some studies using non-representative convenience samples have found that cisgender sexual minority women have lower rates of childbirth, physical inactivity, and obesity, all of which lead to increased risk of breast and other cancers [17,18]. Lack of routine screening among cisgender sexual minority women has also been suggested as a potential cause for disparities, though recent research indicates no difference in screening rates for this population [19–21]. Other studies have indicated that both sexual minority women and men have higher tobacco and alcohol use compared to their heterosexual counterparts, which could increase cancer risk [22,23]. Cisgender sexual minority men may be more likely to visit physicians than cisgender heterosexual men and may be more likely to engage in screening for colorectal cancer [24]. Yet studies remain scattered and inconclusive, in some cases indicating few differences between cisgender sexual minorities and their heterosexual counterparts in cancer risk and screening behaviors.

Cancer risk for transgender/gender diverse (TGD) populations is even less well-studied than for sexual minority populations. TGD persons of all sexual orientations may engage in the same risk behaviors (e.g., tobacco and alcohol use) as cisgender sexual minorities [25,26]. Specific to the TGD population, long-term use of gender affirming hormones (e.g., exogenous estrogen among transgender women) may confer additional risk for developing cancer. At present, lack of longitudinal studies of TGD persons on hormones limit conclusions about this risk factor. TGD persons also may not be referred for cancer screening appropriate to their body parts [27,28]. However, provider recommendations are key: a recent study showed a statistically significant association between patient adherence to screenings and provider recommendation for screening [29]. Even if referred, TGD persons may experience systemic barriers to screening. A transgender man referred for cervical cancer screening to a “Women’s Health Center,” for example, may feel disenfranchised and alienated; similar issues may confront transgender women and other gender diverse persons [30]. Gender dysphoria may be another reason that transgender men have lower rates of Pap tests in some studies [31]. Studies are mixed in terms of access to mammography among transgender women, and recommendations are not clear; lack of research and the need for individual assessment of risk based on age and length of exogenous hormone exposure make recommendations to primary care providers challenging. In addition, transgender women tend to have denser breast tissue, making mammography less reliable than it is for those with fattier tissue [32]. The lack of guidelines around supplemental imaging for people with dense breasts poses another barrier. In sum, few studies have focused on TGD populations; more research and better data collection are urgently needed to provide evidence-based information for optimal clinical care.

Factors Predicting SGM Cancer Patients’ Outcomes

Social determinants of health refer to broad societal and economic factors that can influence the health of individuals, including: 1) economic stability, 2) education, 3) neighborhood and built environment, 4) health and health care, and 5) social and community context. These social determinants may lead SGM patients to experience structural challenges in accessing supportive care and to use maladaptive coping strategies in the face of a cancer diagnosis. SGM people in the population at large are less likely to have adequate health insurance [33], more likely to have experienced discrimination based on their gender identity and/or sexual orientation [34], and more likely to be alienated from their families of origin [35]. These predisposing stressors might be expected to lead to poor psychosocial adjustment following cancer. However, the few studies conducted to date have been equivocal regarding psychosocial disparities among SGM cancer patients. Some studies have found that cisgender sexual minority men and women have worse health-related quality of life following cancer than their cisgender heterosexual, counterparts [16,36]. Other studies have found no differences between cisgender sexual minority and heterosexual populations [37]. And others have found that different factors predict psychosocial outcomes for cisgender sexual minority than heterosexual cancer patients, e.g., discrimination and resilience predicting distress in cisgender sexual minority women with breast cancer [38]. Compared to cisgender heterosexual patients, SGM patients report that they were less frequently included in decision-making and less frequently treated with dignity and respect by cancer care providers [39]. SGM patients are also more likely to report being dissatisfied with the care they received compared to cisgender heterosexual patients [40].

Providers are often not prepared to address SGM patient concerns. SGM-specific training in medical school comprises an average of 5 hours of the curriculum, and some medical schools report no SGM-specific training at all [41]. As a result, the majority of oncologists report that they lack sufficient knowledge to treat SGM patients competently; this lack of knowledge is especially pronounced for TGD patients [42]. Regardless of level of knowledge, providers may feel uncomfortable discussing same-sex sexuality, sexuality for TGD persons, or sexuality in general regardless of sexual orientation or behavior [43]. Providers may have implicit biases toward members of the SGM community and may feel particularly ill-equipped to address TGD health care [44]. Because implicit bias is not conscious, providers may be unaware of their bias, yet their communication and behavior toward SGM patients may indicate prejudice and result in increased stress for these patients [45].

This lack of training and provider discomfort is exacerbated by the anticipation reported by many SGM patients that they will have negative health care experiences [46]. SGM patients may previously have experienced stigma, discrimination, and minority stress when attempting to access healthcare services [45]. As a consequence, they may report anxiety and mistrust when accessing cancer care services, and may delay seeking care or leave care when exposed to a provider’s bias, perceived discrimination, lack of knowledge, or even microaggressions [47]. TGD patients are especially likely to report negative experiences such as being misgendered (i.e., referred to with the wrong name or pronouns) by healthcare providers, and as a result may experience a greater degree of anticipatory stress and anxiety when accessing cancer care [48]. Trauma-informed care approaches can create safe clinical spaces for patients who have experienced such mistreatment historically.

As stated earlier, SOGI is rarely queried during clinical encounters in oncology, is unlikely to be coded in medical records, and is seldom taken into account in care planning [4]. When SOGI is not assessed, SGM patients report feeling invisible. They also worry about when and how to come out to the range of providers and staff they encounter in cancer care [30]. When SOGI is not assessed, health care systems may also struggle. For example, it may be challenging to reconcile lab values based on biological markers of presumed sex with a patient’s reported gender in an EMR. Providers also report fearing that their patients would be uncomfortable reporting on SOGI, despite research finding that over 90% of all patients (including sexual minority, TGD, cisgender heterosexual patients) reported they would be willing to disclose SOGI during a healthcare encounter [49]. The disconnect between provider beliefs and patient willingness to disclose may, in part, explain the low rates of SOGI assessment in oncology, despite validated tools embedded into all commercially available EMRs.

Sexual Health among SGM Cancer Patients

Studies specifically focused on sexual health among SGM cancer patients are limited. However, the majority of studies focused on SGM patients with cancer have sampled patients with breast or prostate cancer. Many of these studies have touched on the implications of these cancer types for sexual health, with a focus on same-sex sexuality. See Table 1.

Table 1.

Preliminary findings related to sexual health for SGM cancer patients

	Sexual minority women	Sexual minority men	Transgender/gender diverse persons
Sexual health (compared to cisgender heterosexual patients)	Fewer sexual identity concerns [50]	More sexual identity concerns [52,53]	More social support from friends/chosen family than biological family[30]
	Less breast reconstruction[51]	More sexual functioning issues[54–56]	Less female breast reconstruction[51]
Resilience factors	Having a partner[57,58]	Viewing sex as a motivator for recovery [30]	Receiving gender affirming treatment[30]

Among cisgender sexual minority women, having a romantic partner is directly related to better sexual function and more sexual desire following breast cancer treatment [57]. Having a romantic partner is also linked to better mental and physical health and less fear of cancer recurrence among these women [58]. Cisgender sexual minority women also reported fewer sexual identity issues following breast cancer [50]. These women chose not to have breast reconstruction more often than their heterosexual peers [51], suggesting that some sexual minority women may sustain affirming body image despite the changes wrought by the impact of cancer and cancer treatment.

Among cisgender sexual minority men, studies have shown that these men experience more sexual functioning difficulties following prostate cancer treatment than their heterosexual counterparts, including change in ejaculation/anejaculation, erectile dysfunction, incontinence/climacturia, penile shortening, and pain during anal sex; these changes are accompanied by loss of libido, and less frequent sexual activity [54–56]. Qualitative studies have found that cisgender sexual minority men are likely to fear sexual rejection after prostate cancer treatment as a result of their sexual functioning difficulties [52]. The sexual side effects of prostate cancer treatment were seen as a barrier to seeking casual sex, dating, and even maintaining long-term relationships [53]. Some cisgender sexual minority men who were in relationships reported encouraging their partners to seek sex outside of their partnership following prostate cancer, while others reported an increase in intimacy within their relationship. Overall, unlike cisgender sexual minority women with breast cancer, who evidenced identity resilience in the face of the side effects of cancer, cisgender sexual minority men with prostate cancer experienced greater negative effects on their identities as gay men, worse mental health, and worse quality of life.

In a qualitative study of SGM patients with cancer, one cisgender white gay male participant with head and neck cancer responded, “I think we might be able to discuss more openly how sex and sensuality can be an important part of coping/healing/recovery processes. I thought this aspect was underplayed and even stigmatized in most environments, but to me it was one of the reasons I fought to survive. Sex can be a great motivator, and it can also be a great medicine” [30]. Here, despite failures on the part of the health care system and health care providers to proactively address the sexual health needs of this patient, sex was a motivator for survival. More research is needed to understand the differences in sexual health outcomes among sexual minority men and women diagnosed with different cancers and with different life experiences, as well as potential moderators of resilience.

Even less is known about the sexual health of TGD patients across sexual orientations following cancer treatment. TGD individuals with breast cancer, like sexual minority women, may be more likely to opt for mastectomy without reconstruction, a decision sometimes questioned by members of the oncology care team [51]. TGD patients may also request that gender-affirming surgeries be coupled with cancer treatments [30]. Overall, more research is needed on the effects of cancer on sexual health among TGD patients.

Another component of sexual and reproductive health is fertility and family building for adolescents and young adults (AYA) diagnosed with cancer. It is well established that many cancer treatments can impair fertility or cause sterility. Multiple organizations such as American Society of Clinical Oncology (ASCO), American Society for Reproductive Medicine (ASRM), National Comprehensive Cancer Network (NCCN) recommend AYA patients receive counseling about fertility threats and referrals to reproductive specialists [59–61]. However, some studies have reported SGM AYA are less likely to be counseled on potential infertility or offered fertility preservation consults [62]. Clinicians have reported assumptions that sexual minority AYA would not be interested in biological children [63]. Still other studies have reported that the counseling that sexual minority patients received on fertility and preservation was presented in a heteronormative fashion and patients who expressed disinterest were told they may “change their mind in the future.” Although there are no studies on TGD persons regarding fertility and preservation in a cancer context, there are several studies examining fertility preservation and family building among transgender AYA; offering fertility preservation consultation is a World Professional Organization for Transgender Health (WPATH) and American Medical Association (AMA) recommendation prior to gender affirming treatments and surgeries. The results of these studies are mixed, with some data showing the preservation of fertility through sperm banking or oocyte cryopreservation is of great interest and other studies suggesting TGD individuals by and large either do not intend to have children or wish to adopt children [64,65].

Similarly, discussion of contraception and safe sex practices for sexual and gender minorities in cancer treatment are critical. If a complete and relevant sexual history is not taken, SGM patients may be exposed to unintentional pregnancy, sexually transmitted infections or reduced efficacy of cancer treatment. Taking a complete and relevant sexual history has only recently been introduced in medical schools in a way that takes into consideration the SGM community [66]. For example, a clinician may ask “Do you have sex with men or women?” A bisexual or pansexual person may answer “both.” However, questions asked in this manner do not account for body parts of the person with whom the patient is engaging in sexual activity. Further, anecdotal reports from AYA cisgender lesbian women highlight the frustrating experience of being asked “Are you sexually active?” When the patient responds, “Yes, with women,” the provider may respond, “Well, then I don’t need to prescribe birth control since you are not sexually active” [67,68]. Alternatively, other sexual minority women may be repeatedly asked if they require birth control even when they indicate they are exclusively sexually active with women [69].

Clinicians, in general, may be challenged to talk about reproductive and sexual health with all patients, regardless of their sexual orientation or gender identity, due to lack of training [70]. However, many people wish to remain sexually active during cancer treatment and hope to obtain guidance on the safety of this important aspect of life. For example, a cisgender, gay man may ask if it is okay to have anal sex during his treatment for lung cancer, to which his physician may respond, “You will be too sick to want sex.” This kind of response from providers shuts down dialogue rather than addressing patient wishes. Alternative responses may stress remaining sexually active during treatment while maintaining safety (e.g., “not if your counts are low”) and enjoyment (e.g. prescribing lubrication and pelvic floor therapy).

Recommendations and Future Directions

Management of sexual health among SGM cancer patients requires, first, acknowledgement of the presence of these patients in oncology clinics and, second, understanding of their unique needs. In order to make SGM cancer patients visible in oncology settings, SOGI should be documented routinely for all cancer patients, and SOGI data should be included in patients’ EMR with consent from patients. These data should be provided directly by patients; previous research has indicated that patients prefer to disclose SOGI non-verbally, via a paper-based or digital form [71]. Guidance on best-practice questions to use for such documentation have been published by the Fenway Institute and others [5], and additional research is underway to examine patient preferences for disclosure. The Center for Medicare Services (CMS) mandates that all EMR platforms have the capacity to collect SOGI, so a particular clinic’s EMR vendor can also be consulted for guidance. Beyond intake forms, inclusive and gender-neutral language should be used on other printed and marketing materials. For example, “spouse” or “partner” should be used instead of “husband/wife” when discussing relationship status; materials should distinguish between gender identity (including TGD categories) and sex assigned at birth. Forms should also include space for preferred name and for pronouns (she/her, he/him, they/them, etc.), and these markers should be visible in the patient’s EMR. Ideally, use of anatomy inventories could help to trigger which cancer screenings should be recommended given a specific patient’s organs.

Once SGM patients are visible in oncology settings, oncology providers and staff must take their unique experiences into account in providing care. A first step in addressing the needs of SGM patients is universal training of providers and staff on SGM cultural humility, defined as a commitment to centering the patient as the expert on their own experiences and an openness to learning about these experiences, thereby circumventing the expected patient-provider power imbalance [72]. The empirical literature on SGM-focused training for healthcare providers is still in its infancy [73,74]. Early research, primarily conducted with medical students, indicates that SGM-focused training is efficacious in improving knowledge and attitudes about SGM patients among healthcare providers [75–79]. To date, no studies have tested the effect of training on SGM patient outcomes, especially in the context of oncology [72]. However, some trainings have shown changes in confidence and self-reported practice changes among oncology practitioners following training [80,81]. In addition, there are resources to guide clinicians about cancer screening considerations for SGM people in the absence of rigorous research [82,83].

Once training has been implemented, oncology clinics can undertake an environmental scan of SGM inclusivity in their clinical settings. Physical markers such as “Safe Space” stickers on the clinic door, tags listing the pronouns of clinic staff, and printed materials that show same-sex couples and TGD individuals of various racial and ethnic backgrounds can help to reinforce the safety of an oncology clinic for diverse SGM patients [84]. Other strategies that could improve care of SGM patients include posting a non-discrimination policy or patient bill of rights that clearly forbids discrimination on the basis of both sexual orientation and gender identity [85]. These policies should cover patients, their visitors, and the providers and staff working in the clinic. Since as many as 70% of TGD people have experienced harassment when using public bathrooms, single-occupant/single-stall bathrooms should be marked as gender neutral or unisex. Other bathrooms should be designated gender-neutral or gender-inclusive where feasible. Signs that explain gender diversity and forbid discrimination in bathrooms may help TGD patients feel safe while using the bathroom of their choice.

The literature on SGM patients with cancer is limited outside of observational studies using convenience samples, for cancer diagnoses beyond breast and prostate, and for SGM subgroups outside of cisgender gay men and lesbians. Further research on diverse SGM cancer patients and their caregivers will be important to drive the evidence base forward. Such studies should use population-based sampling strategies and longitudinal designs to understand the experience of generalizable cohorts of SGM patients over time. Randomized controlled trials of cancer treatments and supportive care interventions should include SOGI data and perform subgroup analyses to assess differential efficacy of interventions among SGM populations. Registries and national surveys that include cancer markers should also include SOGI to promote assessment of SGM cancer disparities. More research is urgently needed on the experience of transgender and gender diverse, bisexual, asexual, and other queer communities with cancer. More data is also needed on the experience of SGM patient-caregiver dyads, including non-partner caregivers.

Intersectional theoretical frameworks, evolving from Black feminist thought and scholarly work [86], must be used to guide research on the needs of SGM cancer patients, who like any group of people are not monolithic in identity. These frameworks highlight for oncology providers and researchers that SGM identities may overlap with other marginalized and stigmatized identities, and this intersectional stress may be multiplicative, rather than additive. Being responsive to the whole person with all of their identities can have a positive impact a patient’s cancer-related outcomes [87].

Conclusion

Making SGM patients visible in oncology and acknowledging their cancer-related needs will form the foundation for high-quality clinical care and expanded research, including research on sexual health outcomes. These efforts will allow both scientists and clinicians to address complex issues of SOGI in cancer and track the intersection of SGM intersectional identity inclusive of race/ethnicity, socioeconomic status, age, etc. With more inclusive research that captures SOGI data across a range of studies and additional SGM-specific research, we can begin to address the inequality and disparities confronted by SGM patients with cancer. We can then advance oncology research and practices that are uniformly effective in the context of diverse sexual orientations and gender identities.