Why Good Cancer Care Means Gender-Affirming Care for Transgender Individuals With Gendered Cancers: Implications for Research, Policy, and Practice

Although there are over 1.4 million transgender individuals in the United States and gendered cancers account for over 661,000 new diagnoses annually,^1,2 the number of transgender individuals with a gendered cancer is unknown. In this study, gendered cancer refers to cancer related to one's biologic sex assigned at birth such as breast, gynecologic, prostate, or testicular.³ The lack of epidemiologic data on gendered cancer among the transgender population is largely due to the lack of standardized collection of gender identity data in state and federal cancer surveillance programs.^4,5 Despite a growing interest in cancer health disparities among sexual and gender minority (SGM) individuals such as those who identify as lesbian, gay, bisexual, transgender, queer, or any other sexual or gender minority (LGBTQ+), little is known specifically regarding transgender individuals' experiences with gendered cancer.⁴ In addition, largely unknown are the best practices for psychological support and/or interventions specifically geared toward this population. SGM individuals might have unique needs, and therefore, it is critical to understand their experience with gendered cancer to foster equitable cancer care.^6,7

Given the cancer disparities experienced by transgender individuals,^8,9 their unique experiences of cancer,⁴ and their potential for negative psychological outcomes,¹⁰ the authors examined the current state of literature regarding the lived experience of transgender individuals with gendered cancer and determined the research, policy, and practice implications. Lived experience was defined as an individual's everyday experiences of the world in which they inhabit through which researchers attempt to gain understandings of the meanings and perceptions of another's world.¹¹ We performed a systematic literature search in PubMed, CINAHL, and PsycInfo databases (detailed methods and results to be published elsewhere). The findings reported here reflect the commonalities identified across 22 peer-reviewed articles specifically examining transgender individuals' lived experience of gendered cancer.

Overall, our findings illustrated that the current literature regarding the lived experience of transgender individuals with gendered cancer was sparse, reflected small sample sizes, and focused on the possibility of cancer-related gender-affirming hormone therapy (GAHT). Our findings uncovered a subsample of peer-reviewed articles focused primarily on the use of GAHT before, during, and after cancer. Regardless of the timing of GAHT, there was inconclusive evidence regarding the role that GAHT plays in cancer development, how it may affect physical and psychological experiences of transgender individuals during cancer treatment, and the role it plays in cancer recurrence. Whether in the context of prostate,¹² testicular,¹³ or breast cancer,¹⁴ studies generally concluded that additional longitudinal research is needed to estimate cancer risk and tailor clinical guidelines.¹⁵

In addition to these biomedical studies, some articles described psychological considerations for GAHT among transgender individuals. Studies suggested that providers need to attend to any decisions regarding the postponement of gender-transitioning treatment¹⁶ and the intersection between gender-affirming care and cancer care.^17,18 However, many peer-reviewed articles found a lack of clear clinical guidelines regarding GAHT and follow-up for transgender individuals with cancer.^{13,14,17,19,20} Treatment decisions made by transgender individuals often reflected their unease in stopping GAHT²¹ or their assuredness that physical characteristics because of hormone use would persist even in the absence of GAHT.²²

Related to the psychological effects of GAHT in cancer care, a lack of psychological and social support for transgender individuals was identified in the literature. The majority of articles identified in our review were case studies that focused nearly exclusively on the medical aspects of patients' care. Despite a few articles that commented on the need for additional information on the lived experiences of transgender individuals,^18,21 very few resources actually identified the psychosocial needs or experiences of transgender individuals with cancer.

The articles that did attend to the psychosocial needs and experiences of transgender individuals provided more in-depth descriptions of the experiences of transgender individuals with gendered cancer and raised important considerations for their psychosocial well-being.^17,23-27 These studies described the disconnect that transgender individuals felt when they were diagnosed with a gendered cancer that did not match their gender identity.^17,23,26 Patients in these studies reported discomfort with joining support groups as individuals who did not identify with their sex assigned at birth.^17,24,26

Implications for Research, Policy, and Practice

The findings from our review of the literature have important implications for research, policy, and practice. Research implications include a clear need for additional theoretically informed, rigorous research focusing specifically on transgender individuals.²⁸ Although some studies included transgender individuals within their sample, subgroup sample sizes were small, limiting the ability to conduct any comparative analyses.²⁸ The lack of statistical power needed to draw meaningful conclusions limits the ability to develop clinical guidelines for providing gender-affirming cancer care, highlighting an important link between research and practice implications.²⁹ Although large-scale epidemiologic data are missing, case studies may provide valuable guidance for clinicians. However, the decision to publish a single case study of a minoritized patient should be a collaboration between the researcher and the transgender individual, affirming a patient-centered approach and shared decision making.^5,30

To address disparities in cancer care, there is also a need for more inclusive language to be applied to clinical studies so transgender individuals are included in these trials.³¹ Future research should also explore the lived experience of transgender individuals who have a gendered cancer and investigate psychosocial interventions designed to improve their well-being and quality of life. Furthermore, the previous identification (and pathologizing) of transgender individuals hinders development in these areas of research. Future research must avoid the use of outdated terminology such as the terms transsexual and gender-dysphoric and the use of ICD-9 codes that medicalize transgender identities and experiences.^20,32-34

Our review findings also have implications for policy. At an organizational level, medical practices must develop guidelines surrounding cancer treatment that is also gender-affirming for transgender individuals.^14,20 Findings also speak to the need to develop medical provider competencies for ensuring that transgender individuals receive equitable care.¹⁸ Access to gender neutral facilities^16,26 and medical providers who are LGBTQ+-inclusive should be a right for transgender individuals. At the governmental level, adopting antidiscrimination policy would be a first step in helping transgender individuals feel more welcome in medical settings and ensuring their access to care.³⁰ Another policy implication is the need for all marriages, civil unions, and other nontraditional unions to be legally recognized, so partners have authority to be involved in the patient's care and, if necessary, to make medical decisions.^35,36 This would ensure that both members of a couple have access to important resources such as medical insurance, life insurance, and other financial benefits.³⁷

This review also illuminated important implications for practice—both medical and psychosocial. Our review discovered the need for clinician training and education to provide competent care to transgender individuals. Studies documented clinicians misgendering patients,^26,33,38 forcing repeated disclosure of patients' gender,³³ assumptions that all patients are heterosexual or gender-normative,^24,25 and contributing to transgender patients' feelings of alienation and invisibility.^16,26,27,33 Clinicians should promote the values of diversity, equity, and inclusion in clinical practice, by creating an open and safe space for transgender patients.^17,26 One way that this can be implemented is by first recognizing that LGBTQ+ individuals are not a homogenous group and that their needs may vary across subgroups.¹⁸ In caring for transgender individuals, cancer care should always begin with asking how the patient would like to be addressed and which pronouns to use. Clinicians also need to be trained in the use of correct terminology.¹⁶

Clinicians must also understand that gendered cancer treatment for transgender individuals can be nuanced and complex because of GAHT and/or gender-affirming surgeries. While this vein of research is yet to be fully explored, initial accounts suggest that there is no one typical experience for transgender individuals who have a gendered cancer. Some may rely on GAHT, have undergone gender-affirming surgeries, and may be planning such surgeries, and others may not undertake such measures. Cancer clinicians should recognize and be prepared to address how previous treatments, such as GAHT and surgeries, might have affected an individual's cancer diagnosis and desired treatment plan.¹⁷ Clinicians should engage in open dialogue about patients' beliefs about their body and their illness, which could foster shared decision making.³⁹

It is equally important to acknowledge that gendered cancers can specifically affect psychosocial issues related to identity and sexuality (eg, betrayal of one's true identity, intimate partner relationships).^26,27 First-hand accounts demonstrate an inherent conflict that gendered cancers may generate in transgender individuals: these individuals can feel betrayed by their body and experience a sense of incredulity that the cancer they are diagnosed with is typically diagnosed in a gender to which they do not identify.²³ This dissonance is important to consider for transgender individuals' social and emotional health. Supportive care interventions—including gender-affirming support groups and services—should not only be offered but also be tailored to help patients cope with their specific diagnoses and psychosocial needs across the cancer journey.^17,24,26 Empathic, person-centered care is one way to provide gender-affirming experiences for transgender individuals with gendered cancer.²⁶ Each individual presents a unique situation, such that it is important that clinicians individually assess each patient's medical and psychosocial needs.⁴⁰ Although clinicians have gained understanding regarding the needs and experiences of transgender individuals with gender cancer since the first documented case study,³⁸ our review suggests that there remains work to be performed to provide equitable cancer care.

In conclusion, there is no one-size-fits-all approach when it comes to meeting the needs of transgender individuals facing gendered cancers. Just as the implications of cancer treatment on GAHT may differ among transgender individuals on the basis of history of GAHT, status of transition, and other factors, so may cancer screening guidelines and psychosocial needs. Although the SGM population has been designated as a health disparity population and there is a call to systematically collect sexual orientation and gender identity data,^41,42 individuals who are transgender, gender-diverse, or nonbinary have largely been overlooked within this population. Given projections for cancer incidence⁴³ and the increasing recognition that transgender individuals are an at-risk and underserved population,⁴⁴ addressing these gaps in oncology and psycho-oncology research, policy, and practice is urgent. Doing so will not only benefit transgender individuals facing a gendered cancer but also lay the groundwork for future research including previously underserved and often marginalized populations.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Collection and assembly of data: All authors

Data analysis and interpretation: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Why Good Cancer Care Means Gender-Affirming Care for Transgender Individuals with Gendered Cancers: Implications for Research, Policy, and Practice

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

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No potential conflicts of interest were reported.