Transgender male patients and hereditary breast cancer risk: broaching difficult topics to reduce healthcare disparities
Thesis
Presented in Partial Fulfillment of the Requirements for the Degree Master of Science in
the Graduate School of The Ohio State University
By
Julia Anne Coltri
Graduate Program in Genetic Counseling
The Ohio State University
2019
Thesis Committee
Robert Pilarski, MS, MSW, LGC, Advisor
Leigha Senter MS, LGC
Kandamurugu Manickam, MD
Melissa Davis, MD
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Copyrighted by
Julia Anne Coltri
2019
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Abstract
Transgender individuals face significant healthcare disparities due to discrimination, which include reluctance to disclose, lack of provider experience and resources, structural barriers, and financial barriers. No consensus guidelines have been developed for breast cancer risk assessment and screening in transgender male patients. Breast health can be a difficult topic for transgender men, as it brings them into female centered spaces and can lead to experiences of gender dysphoria. This research aims to elucidate barriers to breast cancer screening and genetic risk evaluation for transmasculine individuals. Research questions aimed to determine the level of awareness transgender men have about breast cancer risk and screening, and the factors that lead to positive or distressing conversations about breast health with these patients. We aim to determine how healthcare providers can foster a safe and affirming environment that increases comfort and reduces perceptions of discrimination and gender related dysphoria with a focus on genetic counseling for hereditary breast cancer risk assessment. Recommendations are made for improving the clinical experiences of these individuals including mirroring an individual’s terminology for their anatomy, providing gender affirming patient resources, addressing the gendered cultural discussion around breast cancer, using correct name and pronouns, and acknowledging the topic as potentially difficult.
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Dedication
This document is dedicated to my family and friends who have inspired and supported me throughout this process.
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Acknowledgments
I want to thank my committee members for their dedication to this project. Thank you to the community members who provided guidance during the development of survey materials and aided in the recruitment of participants. Thank you to The Ohio State
University genetic counseling graduate program for providing the opportunity for me to pursue this project. Thank you to the faculty, staff, and students of the graduate program for their unending support. Thank you to the National Society of Genetic Counselors
Special Interest Group for funding this project.
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Vita
June 2009……………………………………… The Park School of Baltimore
May 2011……………………………………… Lake Forest College
May 2013……………………………………… B.A. Biology, Brandeis University
May 2019……………………………………… M.S. Genetic Counseling, The Ohio State
University, in progress
Fields of Study
Major Field: Genetic Counseling
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Table of Contents
Abstract ...... ii Dedication ...... iii Acknowledgments ...... iv Vita ...... v List of Tables ...... viii List of Figures ...... ix Chapter 1. Introduction ...... 1 Healthcare Disparities and Discrimination ...... 3 Transition ...... 7 Breast Cancer Risk in Transgender Men ...... 9 Suggested Breast Cancer Screening ...... 15 Genetic Counseling for Hereditary Breast Cancer ...... 20 Recommendations for Culturally Humble Transgender Healthcare ...... 25 Psychosocial Issues in Breast Health ...... 27 Overview ...... 29 Chapter 2. Materials and Methods ...... 30 Participants ...... 30 Procedures ...... 31 Measures/Material ...... 31 Analysis...... 33 Chapter 3. Results ...... 35 Demographics of Participants ...... 35 Transition ...... 36 Interactions with the Healthcare ...... 38 Cancer Experiences of Participants ...... 42 vi
Breast Cancer Screening ...... 44 Breast Cancer Risk Perception ...... 50 Measures of Distress ...... 51 Experiences of Discrimination ...... 54 Recommendations from Participants ...... 61 Chapter 4. Discussion ...... 63 Aim 1. Barriers to Breast Cancer Risk Assessment in Transgender Men ...... 63 Aim 2. Awareness of Breast Cancer Risks and Screenings ...... 67 Aim 3. Factors Leading to Positive or Distressing Healthcare Interactions about Breast Health ...... 71 Aim 4. Creating a Safe and Affirming Clinical Environment ...... 73 Secondary Findings ...... 77 Limitations ...... 80 Conclusions and Recommendations for Providers ...... 81 References ...... 84 Appendix A. Informed Consent ...... 102 Appendix B. Survey Tool ...... 104 Appendix C. Recruitment Materials ...... 110 Appendix D. Free Responses ...... 111
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List of Tables
Table 1. NCCN recommendations for Cisgender Female BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers ...... 16 Table 2. NCCN recommendations for Cisgender Male BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers ...... 17 Table 3. NCCN recommendations for BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers of All Genders ...... 17 Table 4. NCCN recommendations for what patients should receive genetic risk evaluation ...... 22 Table 5. Groups in which a link to the survey was distributed...... 30 Table 6. Demographics of participants...... 35 Table 7. Personal history of cancer and genetic counseling for participants...... 43
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List of Figures
Figure 1. Transition actions endorsed by participants by percentage...... 38 Figure 2: How often participants disclosed that they are transgender to healthcare providers (N, %)...... 39 Figure 3. How important the suggested interventions were to participants based on a Likert scale of 0-5 with 0 being not at all important and 5 being extremely important. .. 40 Figure 4. Healthcare providers seen on an annual or more than annual basis. (PCP= primary care physician, OBGYN= Obstetrician/Gynecologist) ...... 41 Figure 5. Where participants reported receiving medical care...... 42 Figure 6. Percent of participants who had a clinical breast exam in their lifetime vs since beginning to transition. Non-answers not included in analysis...... 44 Figure 7. How often participants had a clinical breast exam since beginning to transition ...... 45 Figure 8. Participants performing self-breast examinations (N, %)...... 46 Figure 9. Participants performing self-breast examinations since having top surgery (N, %)...... 47 Figure 10. Has a healthcare provider ever asked about your family history of breast cancer? (N, %) ...... 48 Figure 11. Participants who endorsed having had a mammogram during their lifetime. . 49 Figure 12. Type of healthcare provider who asked participants about their family history of breast cancer...... 50 Figure 13. Perception of lifetime breast cancer risk for those with and without top surgery by percent. Non-answers were excluded for this analysis ...... 51 Figure 14. Average reported scores for measures of distress related to various healthcare situations with 0 being no distress and 5 being most distress possible...... 53 Figure 15. Participants who reported having experienced discrimination from a medical professional related to their gender identity. Non-answers have been excluded from this analysis. (N, %) ...... 54 Figure 17. Whether participants had ever delayed or avoided care when sick or injured due to fear of discrimination based on gender identity for all participants and stratified by whether or not participants reported having experienced discrimination in a healthcare setting. Non-answers have been excluded from this analysis. (N, %) ...... 55 Figure 20. Average difference between distress scores of participants who reported experiencing healthcare discrimination compared to those who had not. Note: average scores for those experiencing healthcare discrimination were all higher on average. Non- answers have been excluded from this analysis ...... 58
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Figure 21. Among participants who reported having experienced healthcare discrimination, whether they told healthcare providers that they are transgender. (N, %)59 Figure 22. Among participants who reported not having experienced healthcare discrimination, whether they told healthcare providers that they are transgender. (N, %)60 Figure 23. Self-breast examination frequency reported by participants with and without top surgery...... 61
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Chapter 1. Introduction
Transgender individuals have a gender identity that is incongruous with the sex that they were assigned at birth. Current estimates suggest that approximately 0.6% of the United
States population identifies as transgender, with the distribution more heavily weighted in younger individuals (Gates, 2011). Gender identity refers to the internal sense of one’s gender, while gender expression refers to the ways in which an individual presents and enacts gender identity. An individual’s gender identity may be independent from primary and secondary sexual characteristics, sexual orientation, chromosomal sex (XX, XY, and others), and gender expression. It is important to note that gender incongruity with the sex assigned at birth does not necessarily imply that an individual has a gender identity that fits neatly into the alternate gender category. Many individuals identify as non- binary, genderqueer, agender and other forms of variant gender. Transgender can be used as an umbrella term for gender variance.
Historically, being transgender was considered a mental disorder. While transgender individuals have always existed, with evidence of their existence across cultures and throughout history, the modern pathologization entered the medical lexicon as
“transvestitism” in 1918, coined by Magnus Hirschfeld, a German Physician (Kahn,
2016). While Dr. Hirschfeld was actually a pioneer of using hormone therapy and surgery to address gender dysphoria, many of his contemporaries attempted to “cure”
1 transgender individuals by changing their gender identity rather than affirming their desire to live as their identified gender. In 1980, the DSM-3 introduced “gender identity disorder” as a diagnosis, which persisted in the DSM-4 (Drescher, 2013). The most recent edition of the Diagnostic and Statistical Manual (DSM V) includes gender dysphoria, which is defined as clinically significant distress or impairment in social, occupational, or other important areas of functioning associated with the incongruence between one’s gender identity and sex assigned at birth or gender roles typically associated with that sex. However, some critics suggest that this distress is not inherent to the experience of being transgender, but rather created by societal rejection of gender variance, and therefore should not be considered disordered (Whalen, 2012).
While one may frequently see lesbian, gay, bisexual, and transgender individuals grouped together under the “LGBT” umbrella, transgender individuals differ from LGB people because this terminology refers to their gender identity rather than sexual orientation.
Many researchers seek to group the LGBT community together for the purposes of research, but gender minority individuals may have concerns that differ from those of sexual minority individuals. This paper will focus on individuals who were assigned a female gender at birth but have a male gender identity and often a male gender expression. These individuals may be referred to as FtM transgender (an abbreviation for female-to-male), transmen, or transmasculine.
The topic of the healthcare experiences of transgender individuals is receiving increasing attention from the medical community. The Healthy People 2020 initiative lists improving the “health, safety, and well-being of lesbian, gay, bisexual, and transgender
2 individuals” as a goal. They identify transgender-specific health needs as a priority research area (US Institutes of Medicine, 2012). This paper seeks to further these aims by elucidating the experiences of transgender men in healthcare settings, with a focus on their discussions and perceptions about breast cancer risk.
Healthcare Disparities and Discrimination
Transgender individuals experience significant healthcare disparities, as will be discussed below. Four main issues are seen as barriers to healthcare for trans people: reluctance to disclose, lack of provider experience and resources, structural barriers, and financial barriers (US Institutes of Medicine, 2012). The minority stress model is a framework that describes chronically high levels of stress faced by minority groups due to interpersonal prejudice and discrimination (Meyer, 2003). It may be used to examine the causes and implications of these disparities. Meyer (2003) identifies both distal and proximal minority stress processes which were initially applied to sexual minority individuals, but were later applied to gender minority individuals as well. Distal stressors include events of prejudice, discrimination, and violence while proximal stressors include expectations of rejection, concealment, and internalized homophobia/transphobia.
On the highest level, institutional stigma affects these individuals and their healthcare access. They are three times as likely to be unemployed, in part due to stigma and the lack of federal legislation that prohibits discrimination in employment based on gender identity (James, 2016). They are also less likely to have health insurance, in part due to unemployment and other socioeconomic disadvantages (Meyer, 2017). Individuals without health insurance are less likely to seek out routine preventative care (Institutes of
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Medicine, 2002). Transgender individuals were more likely in one study than cisgender individuals to have no personal healthcare provider, have not been able to afford to go to the doctor when needed in the past year, and not have had a routine physical in the past year (Meyer, 2017). Transgender people are more likely to have experienced homelessness, in part due to the lack of federal protections against housing discrimination
(US Transgender Survey Report, 2015). Nearly a third of transgender people live in poverty, compared with 14% of the general US population (James, 2016). Even after controlling for socioeconomic differences, transgender individuals at an urban medical center were less likely to adhere to mammogram screening guidelines than cisgender individuals with an odds ratio of 0.53 (Bazzi 2015).
Another barrier for transgender individuals receiving care is the structural assumptions regarding the gender binary. Pathologists noted that electronic medical systems frequently rejected samples due to identity discrepancy within the EMR when screening for breast cancer with a female specific ICD code in samples from individuals with a male gender identifier (Gupta, 2016).
Interpersonal stigma also affects transgender individuals’ health. A national study of over 6,000 transgender adults found that 28% had experienced harassment in medical settings, 19% were refused care, and 2% experienced violence in their doctor’s office
(US Institutes of Medicine, 2012). Additionally, 33% reported having delayed seeking preventative care due to fear of discrimination and 28% delayed care even when they were sick or injured (US Institutes of Medicine, 2012). In another study 1 in 4 transgender individuals reported being denied care due to their transgender identity,
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20.9% reported being subjected to harsh language, 20.3% reported being blamed for their own health problems, 15% reported that a provider had refused to touch them or used extreme precautions, and 70% reported some type of health care discrimination (Lambda
Legal, 2010). In a review article analyzing 12 studies of nursing professionals towards
LGBT individuals, all showed the presence of negative attitudes among the majority of participants (Dorsen 2012).
As noted in the minority stress model, these experiences may lead to expectations of discrimination and concealment of identity. Concealing transgender status in a medical setting may be harmful to a patient because they may not receive the most appropriate care. For example, an individual who has a male gender presentation but who was assigned a female gender at birth may have a cervix, uterus, ovaries, etc. and has a risk of cervical, endometrial, and ovarian cancer, among others. If their transgender status is not revealed to a healthcare provider, they are unlikely to receive cervical cancer screening and a diagnosis may be missed or delayed. Health professionals need to be aware that these patients may have expectations of discrimination because that may impact how they respond to the provider.
Transgender individuals experience increased rates of anxiety, depression, somatization, and overall distress compared to controls (Bockting, 2010). These measures are correlated with felt and enacted stigma, rather than experiences of gender dysphoria.
Enacted stigma is defined in the context of the minority stress model as the experience of mistreatment due to discrimination by others, while “felt stigma” refers to shame and the expectation one may have internally that they will be discriminated against. Lower levels
5 of peer support are associated with experiencing enacted stigma and psychological distress (Bockting 2013). Being a person of color, having a lower income, not “passing”
(having others be able to identify an individual as transgender on sight), and being “out”
(others knowing and individual is transgender) were associated with more experiences of discrimination, highlighting the intersectional nature of minority identity (Bockting
2013).
Lack of provider comfort, level of training, and lack of training have been identified as factors influencing care of transgender patients. A national study of 6000 transgender individuals found that 50% reported having to teach their medical providers about clinical care (Grant, 2011). A national study of medical school curricular content in the United
States found that students receive an average of five hours of content related to gay, lesbian, bisexual, and transgender individuals combined (Obedin-Maliver, 2011). Only
30% of medical schools reported curricular material about transitioning and transition- related care (Obedin-Maliver, 2011). On a knowledge survey of oncology providers, only 36% were able to correctly answer a question about breast cancer risk in trans men after mastectomy (Banergee 2018). In a 2019 study of healthcare providers in the
Midwestern United states, knowledge about transgender health had an inverse correlation with transphobia and was not associated with hours of formal or informal education, demonstrating that increasing amount of transgender care education may not be sufficient to increase provider knowledge and quality of care (Stroumsa 2019).
However, access to healthcare for transgender individuals is slowly improving. The
Affordable Care Act (2010) protections for individuals with preexisting conditions made
6 it illegal to discriminate against transgender people in the health insurance marketplace.
This allowed low income patients to access gender affirmation care through Medicaid. In
2014, the prohibition on coverage of gender-transition related healthcare for Medicare patients was lifted. Recent efforts to repeal the Affordable Care Act, however, has placed access for these individuals in jeopardy.
Transition
Many transgender individuals choose to “transition”, or change their gender expression to match their gender identity rather than their sex assigned at birth. The process of transitioning is not the same for every individual and may include any or all of the following interventions (Eyssel, 2017). Often an initial step is dressing and grooming one’s self as the identified gender. Some individuals may choose to transition to a different name and set of pronouns in their interpersonal interactions. Some make these changes official by legally changing their name and gender identifier.
Hormone therapy is commonly used to induce secondary sexual characteristics of the identified gender. For transgender men this involves the administration of testosterone by transdermal patch, gel, implant, or injection with the goal of inducing virilization. A common injectable dose is 200-250 mg of testosterone esters administered every two weeks with the goal of reaching a serum concentration of 300-1000 ng/dL(Gooren
2008)(Gardner, 2013). Effects include male-pattern body hair growth, vocal deepening, male physical contours due to changes in muscle mass and fat distribution, cessation of menses, cliteromegaly, changes in breast tissue, and mental/emotional changes
(Sonnenblick, 2018)( Gooren, 2008).
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“Top surgery” is a common term used to refer to a range of surgical procedures used to create a male-contoured chest appearance. This may include bilateral double incision mastectomy, periareolar mastectomy, breast reduction, etc. These types of surgery are frequently not equivalent in terms of reduction of breast cancer risk compared to a risk- reducing mastectomy. In individuals with BRCA1/2 pathogenic variants, who have a lifetime risk of developing breast cancer of 65-80%, a residual risk of 5-10% remains following subtotal mastectomy and this figure may be higher depending on the exact type of surgery (Rebbeck, 2018). Individuals with pathogenic variants in these high risk genes are recommended by the National Comprehensive Cancer Network to consider risk reducing mastectomy (NCCN Version 2.2019). Additionally, it is often not possible to screen for breast cancer using mammography following a top surgery. Another way that individuals create a male-appearing chest is through breast-binding, which may be done with a specialized garment called a “binder” or other items. Long term use of tight chest binding can lead to skin breakdown, respiratory compromise, and chronic pain.
Gender affirmation surgery is a term that describes what was historically referred to as
“sex reassignment surgery” or “gender reassignment surgery”. It may refer to one of several types of surgery to construct genitals that appear and function as a phallus. The current terminology reflects the view that gender is not being reassigned, but rather affirmed by the procedure. Top surgery is more commonly sought and completed than genital surgery. It is important to note that “gender affirming treatment” or “gender affirming surgery” can also be used as umbrella terminology for any treatment or surgery that is performed as part of an individual's’ transition. Some individuals may have a
8 hysterectomy and salpingo oophorectomy even in the absence of an external genital surgery. The variety of transition related procedures highlights the importance of performing an anatomic inventory in an oncology setting.
For children and adolescents who identify with a gender other than the one they were assigned at birth, there has been a recent move towards the use of “puberty blockers” to delay any permanent physical changes while the individual gains more experiences as the identified gender. Gonadotropin-releasing hormone (gnRH) analogs are drugs that are typically given when an individual is at Tanner stage 2-3 of breast development (Vries,
2011). They prevent puberty from progressing and are fully reversible for a period of time (Vries, 2011). These drugs are not known to cause an increased risk of breast cancer and have actually been used for ovarian preservation in people receiving chemotherapy for breast cancer (Sun, 2014).
Breast Cancer Risk in Transgender Men
Current data suggest that 12% of cisgender women will be diagnosed with breast cancer during their lifetime (SEER, updated 2018). No large population studies have gathered sufficient data to draw conclusions regarding breast cancer risk in transgender men, as will be described further below. It is unclear how testosterone hormone therapy affects breast cancer risk and evidence has been conflicting. Additionally, it is unclear to what extent various types of top surgery decrease breast cancer risk. Gender identity is not commonly captured by large datasets, so transgender individuals may not be identified upon a review of records. Several datasets have provides some preliminary evidence regarding breast cancer risk in trans men with limited implications. Additionally, case
9 reports have described breast cancer occurrences in transgender men with and without top surgery.
The Surveillance Epidemiology and End Results Data Program collects limited data related to gender identity and does not differentiate between transgender men and transgender women when reporting cancer incidence data. Their data showed that overall transgender people had a proportional incidence ratio of 26.71 compared with cisgender males and 0.16 when compared with cisgender women (Braun, 2017).
A cohort of 795 Dutch individuals receiving hormone therapy through an outpatient clinic an analysis showed that transmen had a breast cancer incidence rate of 5.9 per
100,000 person years compared to 155 per 100,000 person years in cisgender women
(Gooren, 2013). Interestingly, 75% of these cancers arose after top surgery. However little can be concluded from this study due to small sample sizes and lack of systematic case ascertainment.
A large retrospective study of 5,135 transgender individuals by the U.S. Veterans Affairs health system identified seven cases of breast cancer among transgender men, including one case in an individual who had undergone top surgery (Brown, 2014). They reported that this was not higher than the rate in cisgender females in an equivalent cohort (Brown,
2014). Their study only included individuals diagnosed with gender identity disorder, gender identity disorder not otherwise specified, transexualism, or transvestitism fetish disorder who sought treatment through the VA rather than those who self-identified as transgender. Hormone therapy was not routinely offered for transgender patients at the
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VA until 2011 and this study did not specify the hormonal history of the identified cases, so application of these results to the general population is limited.
A total of 17 cases studies of breast cancer in transgender men have been reported on in the literature (Burcombe, 2003)(Katayama, 2015)(Nikolic, 2012)(Shao, 2011). Seven were an unreported type, eight were invasive ductal carcinoma, and two were tubular carcinomas. Out of these cases, three were identified in mastectomy specimens following masculinizing chest surgery. Six of the patients developed breast cancer sometime after their chest masculinization surgery, indicating that risk of breast cancer remains, even following this type of procedure. None of the patients were identified as having a hereditary cancer predisposition syndrome, although not all were tested and some were only tested for BRCA1 and BRCA2. Authors of these articles frequently suggest hereditary risk assessment as an integral part of pre-surgical planning for top surgery
(Oakes, 2019).
A case series of transgender individuals at 50% or greater risk for a BRCA1 pathogenic variants reported genetic counseling sessions with two transgender male individuals
(Sacca, 2018). The first individual was a 19 year old patient at 50%-67% risk for one of two pathogenic BRCA1 variants identified in the family. He was planning for top surgery but would plan to have a risk reducing mastectomy rather than breast reduction in the context of a positive genetic test result. One issue raised was the timing of genetic testing. While cisgender women may often defer testing until closer to age 25 when screening would typically begin, the patient’s surgical decision-making was going to occur before that time, so it was logical to test at a younger age. The patient was also
11 planning to have a bilateral salpingo-oophorectomy to further his transition goals, regardless of the results of genetic testing. Another issue raised was that genetic testing could impact the timeline of surgeries due to financial considerations. If he tested positive for either familial variant, insurance was likely to provide coverage for a risk reducing salpingo-oophorectomy and a risk reducing mastectomy. With a negative genetic test result, insurance was more likely to view these procedures as elective and decline to provide coverage.
A second patient was a 24 year old transgender male who was at 50% risk for a pathogenic BRCA1 variant and who had a history of top surgery for transition related reasons. He was motivated to seek genetic testing by gender dysphoria related to the biological functions associated with the ovaries and uterus. He desired surgery to remove those organs, leading to a referral for risk assessment. This individual tested positive for the familial variant and was surprised and upset by the result. Since no standardized recommendations exist for transgender male individuals who have had top surgery and who are positive for a pathogenic variant, follow up required ongoing coordination with his physician and surgeon. An MRI was performed and detected residual breast parenchyma, so annual MRI follow-up was advised unless a more complete risk reducing mastectomy was performed. Discussion of risk reducing salpingo oophorectomy timing included discussion of increased risk for early bone loss and menopause symptoms.
However, this patient was amenorrhic due to testosterone therapy, so this may be less of a concern than with the average cisgender female patient.
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Studies about how testosterone therapy alters breast tissue have been inconsistent in their results. One study noted reduced glandular tissue and increased fibrous connective tissue in the histology of breast tissue from 23 men treated with injectable testosterone. Cysts, adenosis, and duct and lobular hyperplasia are frequently observed in post-menopausal women but were not observed in this cohort (Slagter, 2006). A study of mastectomy specimens from 148 patients using androgen therapy who were undergoing top surgery found that the majority demonstrated at least some degree of lobular atrophy as well as ectatic ducts, fibrous stroma, and areas resembling the fibrous stage of gynecomastia
(Torous 2019). A single study of five transgender men investigated the differences in gene expression in breast tissue before and after hormone therapy in transgender men, showing that 243 genes were upregulated and 2,007 genes were downregulated in the post-treatment group (Bentz 2010). Patterns of heterogeneity of gene expression were observed between individual patients. While far from conclusive, this research points to the complex interactions that high dose testosterone therapy may have with tissue in the breasts of individuals who were assigned female at birth.
Studies have suggested that testosterone may increase apoptosis by decreasing the expression of estrogen receptor in the breast epithelium and reduce proliferation
(Eigeliene 2012)(Dimitrakakis 2003). This would suggest a decreased risk for breast cancer in trans men treated with hormone therapy.
However, in cisgender women, higher levels of endogenous testosterone have been identified as a breast cancer risk factor in pre- and postmenopausal women in some studies. A 2015 review found that testosterone levels were associated with increased risk
13 with an odds ratio of 1.18 controlling for BMI, age at menarche, age at first full-term pregnancy, and number of full-term pregnancies (Brown, 2015). This analysis also identified higher levels of estradiol, calculated free estradiol, estrogen, androstenedione,
DHEAS as being associated with increased breast cancer risk in cisgender women
(Brown, 2015). One hypothesis to explain these discrepancies is that testosterone may be aromatized to estrogen or metabolised to dihydrotestosterone (Braun, 2017). A factor further complicating the analysis of testosterone administration and breast cancer risk is the high percentage of individuals (71% of transmen) who inject hormones that are obtained from sources other than a healthcare provider, which may vary in quality and dose (Xavier, 2007). The Endocrine Society previously cautioned against testosterone treatment in women with breast cancer, classifying it in a high risk category but they have since downgraded this to a moderate risk category (Hembree, 2009)(Hembree, 2017).
Transgender patients may also have a greater prevalence of risk factors that increase their risk of certain health conditions, including breast cancer. Substance abuse, including alcohol abuse is more common in transgender individuals, which may also increase breast cancer risk (Gilbert, 2018). Transgender people are more likely to be former or current smokers (Bushting, 2017). While controversial, a number of studies have connected tobacco use to increased breast cancer risk including younger breast cancer diagnoses in smokers and increased risk of breast cancer in postmenopausal women exposed to heavy second-hand smoke (Xue, 2011). Substance abuse levels in this population may be associated with high levels of distress and mental illness due to minority stress (James, 2016). Transgender individuals who experienced assault and
14 harassment were more likely to use alcohol heavily (Coulter, 2015). Thus, minimizing stigma may help reduce some breast cancer risk factors in transgender men. Transgender men are also more likely than cisgender women to be nulliparous, a known risk factor for breast cancer (James, 2016). They are also, therefore, less likely to have breastfed an infant during their lifetime, which is associated with higher breast cancer risk.
Suggested Breast Cancer Screening
The National Comprehensive Cancer Network recommends that cisgender women at average risk for breast cancer begin screening with annual mammogram at age 50
(NCCN Version 2.2019). For cisgender women at increased risk for breast cancer, such as those with a strong family history of breast cancer leading to a lifetime risk of >20% and those with identified hereditary cancer predisposition syndromes/variants, mammogram and breast MRI may be initiated at 30 and 25, respectively (NCCN Version
2.2019). For cisgender women, clinical breast exam is recommended every 6-12 months beginning at age 25, with breast awareness beginning at age 18 (NCCN Version 2.2019).
In cisgender men with a mutation in BRCA1/2 breast self exam training and education is recommended starting at age 35, with clinical breast exam every 12 months also beginning at age 35 (NCCN Version 2.2019). Self breast exam and clinical breast exam are not typically recommended for cisgender men at average risk for breast cancer without symptoms. Individuals with an identified hereditary cancer predisposition syndrome may have different screening and risk reduction recommendations than the general population and those who are high risk purely based on family history. Although
15 these recommendations vary by gene, BRCA1/2 recommendations are reviewed here, as
BRCA1/2 are the most common genes associated with hereditary breast cancer.
Table 1. NCCN recommendations for Cisgender Female BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers
Recommendations by the NCCN for Cisgender Women
Breast Cancer • Breast awareness starting at age 18 y Screening • Clinical breast exam every 6-12 mo, starting at 25 y
• Annual breast MRI with contrast beginning at age 25y (or
mammogram with tomosynthesis if MRI is unavailable)
with individualization based on breast cancer diagnosis
before age 30 in the family
• Annual mammogram with consideration of tomosynthesis
for age 30-75 y
• Individual recommendations for patients over 75 y
Risk Reducing • Discuss as an option Mastectomy Risk reducing • Recommend RRSO between 35-40 y upon the completion salpingo- oophorectomy of childbearing for BRCA1
• Reasonable to delay RRSO until age 40-45 y for BRCA2
• Discuss limited data about increased risk of serous uterine
cancer with BRCA1 variants and patient and provider
should consider the risks and benefits of concurrent
hysterectomy prior to RRSO.
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Table 2. NCCN recommendations for Cisgender Male BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers
Recommendations by the NCCN for Cisgender Men
Breast Cancer • Breast self-exam training and education starting at age 35 y Screening • Clinical breast exam every 12 mos starting at age 35 y
Prostate Cancer • Recommend prostate cancer screening for BRCA2 carriers Screening starting at age 45 y
• Consider prostate cancer screening for BRCA1 carriers
starting at age 45 y
Table 3. NCCN recommendations for BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers of All Genders
Recommendations by the NCCN for all Genders
Education • Education about signs and symptoms of cancer with
emphasis on those associated with pathogenic/likely
pathogenic BRCA1/2 variants
• No guidelines exist for pancreatic cancer and melanoma,
but screening may be individualized based on family
history
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Currently there are no established evidence-based guidelines for breast cancer screening in transgender individuals. Several organizations have suggested guidelines for screening these patients. The World Professional Association for Transgender Health “Standards of
Care for the Health of Transsexual, Transgender, and Gender Nonconforming People
Version 7” suggests that there have not been sufficient large-scale prospective studies to determine the most appropriate type and frequency of cancer screenings in these patients
(Coleman, 2017). They suggest that overscreening may result in higher healthcare costs, high false positive rates, unnecessary radiation exposure, and unnecessary diagnostic interventions such as biopsies while under-screening may result in delays in diagnosing cancers while they are more readily treatable. They also note that patients may find cancer screening gender affirming (such as mammograms in transgender women) or they may cause physical and emotional pain (such as Pap testing for transgender men). They do not provide specific recommendations for breast cancer screening in transgender patients.
The University of California San Francisco publishes the Guidelines for the Primary and
Gender Affirming Care of Transgender and Gender Nonbinary People (2nd edition) proposes that transgender men who have not undergone bilateral mastectomy or who have only undergone breast reduction should undergo screening according to the current guidelines for cisgender women (Deutsch, 2016). For individuals who have undergone top surgery, no evidence-based guidelines have been established and mammogram is typically not technically feasible. They point out that while some guidelines suggest annual chest wall exam, this is in conflict with the move away from clinical exams for
18 cisgender women in certain consensus recommendations. Diagnostic exam, ultrasound, and MRI may be used to evaluate new complaints.
Fenway Health, a LGBT health center in Boston, MA also recommends that transgender men who have not undergone mastectomy and those who have only undergone breast reduction should be screened as recommended for cisgender women (Medical Care of
Transgender Persons, 2015). They do recommend that transgender men who have had chest surgery have annual chest and axillary exam due to the risk of breast cancer developing in any residual tissue.
The Lyon-Martin Health Center, a LGBT health center in San Francisco, “Medical
Therapy and Health Maintenance for Transgender Men: A Guide for Health Care
Providers” (Gorton, 2005) proposes the general dictum that screening “should continue until the patient no longer has the screened organ.” Additionally, they specify that transmen who do not have mastectomy should be screened with mammography and clinical breast exam according to age and family history using the same guidelines as those for cisgender women. They also acknowledge that no mastectomy can remove all breast tissue and recommend that any suspicious lumps should be evaluated by a healthcare professional.
While these guides provide suggestions for breast cancer screening in transgender individuals, these recommendations have not been evaluated by a consensus body or tested for outcomes. Common to all guidelines is the recommendation that transgender men who have not undergone top surgery and those who have only had a breast reduction should be screened similarly to cisgender women. These guidelines recognize the
19 importance of screening while acknowledging the potential for overscreening both physically and psychologically.
Genetic Counseling for Hereditary Breast Cancer
Hereditary cancers are those that arise due to a cancer predisposing gene or genes. In individuals who are assigned female at birth with breast cancer, a hereditary cancer predisposition syndrome is present in 5-10%. The identification of BRCA1/2 in 1994 and
1995 respectively and the availability of genetic testing, first for those two genes and then for a panel of hereditary genetic cancer predispositions brought hereditary cancer counseling into the collective consciousness. BRCA1 and BRCA2 are the most common causes of hereditary breast cancer but many more causative genes have been identified and now panel testing for many hereditary cancer genes at one time is common (O’Leary
2017).
Allain (2007) states that “The purpose of genetic counseling in the oncology setting is to allow individuals an opportunity to learn how heredity contributes to cancer risk, understand their personal risk of developing cancer, understand their options for managing their cancer risk, choose a course of action that is appropriate for them, and provide them with additional resources (Allain, 2007).” Common features of an appointment may include a personal and family medical history intake, psychosocial assessment, cancer risk assessment, molecular testing for hereditary cancer predisposition syndromes, and follow-up considerations.
Techniques used in evaluation of an individual in a genetic counseling appointment for hereditary cancer risk include the construction of a detailed pedigree, which should
20 contain first, second, and third degree relatives, family ancestry, for individuals with cancer: type of cancer; bilaterality; age of diagnosis; and history of chemoprevention and/or risk reducing surgery, and additional health information for family members without a cancer diagnosis (Trepanier 2004, NCCN 2018). Due to the common phenomenon of errors in family health reporting, pathology reports, medical records, and death certificates may be obtained (Allain, 2007). This analysis of family history is essential for determining whether molecular genetic testing is appropriate and what testing should be offered. Questions that have been suggested for family history analysis for all transgender individuals in a primary care setting include clotting disorders, cardiovascular disease, hypertension, diabetes, and mental illness due to the possible interaction of these conditions with exogenous hormone supplementation (Feldman
2006).
Additionally, a personal medical history should be obtained and should include personal history of cancer diagnosis/diagnoses including age of diagnosis, histology laterality, chemoprevention and/or risk reducing surgeries, reproductive history, carcinogen exposures, history of hormone or hormonal contraceptive exposure, cancer surveillance history, major illnesses, surgeries, and hospitalizations, and previous biopsies with pathology results (NCCN 2018, Reiley 2012). The National Comprehensive Cancer
Network (NCCN) provides guidelines for who should receive genetic evaluation and testing based on personal and family history. For families that are suspicious for conditions such as Cowden syndrome/PTEN hamartoma tumor syndrome (PHTS), Peutz-
Jeghers syndrome, Neurofibromatosis type 1, and Ataxia Telangiectasia syndrome, a
21 physical exam by a physician may provide information about suspicious cutaneous, skeletal, vascular findings, or other physical findings.
Table 4. NCCN recommendations for what patients should receive genetic risk evaluation
Criteria for Further Genetic Risk Evaluation (NCCN 2018)
• An individual at any age with a known pathogenic/likely pathogenic variant in
a cancer susceptibility gene within the family, including such variants found on
research testing
• An individual at any age with a known pathogenic/likely pathogenic variant in
a cancer susceptibility gene found on tumor testing
• An individual diagnosed at any age with any of the following:
o Ovarian cancer
o Pancreatic cancer
o Metastatic prostate cancer
o Breast cancer or high grade prostate cancer and Ashkenazi Jewish
ancestry
• An individual with a breast cancer diagnosis meeting any of the following:
o Breast cancer diagnosed at age <50 y
o Triple-negative (ER-,PR-,HER2-) breast cancer diagnosed at age 60 y
o Two Breast cancer primaries
o Breast cancer at any age and
§ >1 close blood relative with:
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• Breast cancer age <50 y or
• Invasive ovarian cancer or
• Male breast cancer or
• Pancreatic cancer or
• High-grade (Gleason score >7) or metastatic prostate
cancer
§ >2 close blood relatives with breast cancer at any age o An individual who does not meet the above criteria but has a first or
second degree relative with any of the following:
§ Breast cancer <45 y
§ Ovarian cancer
§ Male (cisgender) breast cancer
§ Pancreatic cancer
§ Metastatic prostate cancer
§ >2 breast cancer primaries in a single individual
§ >2 individuals with breast cancer primaries on the same side of
family with at least one diagnosed <50 y o Other criteria for other specific cancer syndromes
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Genetic counselors may also provide personalized risk estimates, including the use of various risk models. The Gail risk model may be used to evaluate the lifetime risk of breast cancer (to age 90) and risk in the next 5 years for a cisgender female individual who has not had breast cancer using information about age at menarche, age at first live birth, current age, ethnicity, biopsy history, and number of first degree relatives with breast cancer (GAIL CITATION). The Tyrer-Cuzik/IBIS risk model provides a lifetime risk estimate and a 10 year risk estimate, taking into account paternal and maternal history family history, personal history of benign breast disease (atypical ductal hyperplasia and lobular carcinoma in situ), breast density, age at menarche, age at menopause, nulliparity/age at first childbirth, positive or negative genetic test results,
Ashkenazi Jewish ancestry, weight, height, and years of hormone therapy use (IBIS
CITATION). The Claus model can be used to estimate risk for cisgender women age 29-
79 y.o. It provides analysis based on current age, number of first degree relatives with breast cancer and their ages at diagnosis, number of second degree relatives with breast cancer and their ages at diagnosis, and has more recently been adapted to include family history of ovarian cancer. These risk models are all intended for individuals who were assigned female at birth but do not account for factors that may be present in transgender individuals, such as testosterone therapy and types of chest surgery, which may limit their utility in the evaluation of transgender patients.
Genetic counselors provide patient education related to basic concepts of genetics and cancer susceptibility, including assessment of patient understanding. Risks, benefits, and limitations of genetic testing should be discussed with patients (NCCN 18). It is also
24 important to discuss the patient’s goals for cancer family risk assessment (NCCN 18).
Understanding these concepts is crucial for true informed consent and this information also empowers patients’ decision making.
Posttest counseling typically includes a result disclosure along with a discussion of the significance of the result and their impact on medical management options, results interpretation in the context of personal and family cancer history, informing and testing high risk family members, and providing resources such as support groups and research studies (NCCN 18).
A frequent component of genetic counseling sessions for hereditary cancer risk is the distribution of materials related to the topics discussed and sources of information and support. A genetic counselor may struggle to provide appropriate materials to a transgender patient, as support resources and informational materials are often either directed towards cisgender men or women specifically.
Recommendations for Culturally Humble Transgender Healthcare
“Cultural humility” rather than cultural competency has been proposed as a goal for healthcare providers caring for transgender individuals. This concept may be described as “ability to maintain an interpersonal stance that is other-oriented (or open to the other) in relation to aspects of cultural identity that are most important to the [person].” Three important aspects to cultural humility are a lifetime commitment to self-evaluation and critique, commitment to fixing power imbalances, and the development of partnerships with advocacy groups and community organizations (Tervalon 1998). Cultural humility
25 can be seen as a guiding principle for providing care to transgender individuals and can be seen as an underpinning for the following recommendations.
A number of general guidelines for the care of transgender patients have been proposed. Many guidelines suggest that the clinic environment should reflect a provider’s commitment to serving the transgender community. The University of
California San Francisco “Guidelines for the Primary and Gender-Affirming Care of
Transgender and Gender Nonbinary People; 2nd edition” (Deutsch, 2016) states that waiting areas “should include transgender-themed posters, artwork, pamphlets, magazines, etc. to indicate a commitment to serving the transgender community.” They also suggest the importance of providing clear access to the bathroom that most fits an individual’s gender identity and access to non-gendered single stall bathrooms upon request (Deutsch, 2016).
The importance of training all clinic staff, not just healthcare providers, about transgender issues has been discussed (Deutsch 2016). Any individual who a patient may interact with in a healthcare setting can be an opportunity to practice cultural humility and support the patient, or a possible opportunity for the patient to be discriminated against or treated poorly. Topics to discuss include use of an individual’s chosen name and appropriate pronouns, avoiding gendered terms when talking about a patient, avoiding unnecessary questions based on curiosity, and ensuring that a patient feels respected (ACP, 2015).
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Psychosocial Issues in Breast Health
Transgender individuals are more likely than cisgender individuals to experience high levels of psychological distress. One form of stress common to many transgender individuals is gender dysphoria. Gender dysphoria refers to “distress caused by the discrepancy between one's experienced/expressed gender and one's assigned gender and/or primary or secondary sex characteristics (Byne, 2018).” For transgender men, this would involve discomfort caused by one’s experience/expressed maleness and one’s assigned female sex and/or female secondary sex characteristics. In a study of gynecologic care in transgender men, breasts were identified as causing the most gender identity conflict (Dutton, 2008). The act of going to a gynecologist’s office or getting a mammogram is identified by many individuals as an experience that triggers gender dysphoria.
The “pinking” of breast cancer has been identified as a source of discomfort for some patients and has drawn critique from some breast cancer advocates (Koulata, 2015).
Breast cancer awareness has been inexorably linked with the color pink and slogans like
“fight like a girl” and “save the boobies/ta-ta’s”, which sexualizes and feminizes the diagnosis. Feminizing of breast cancer diagnosis and treatment can be alienating or dysphoria-inducing for transgender male patients as well as cisgender male patients who are diagnosed with breast cancer. Some transgender male patients with breast cancer expressed regret that the choice of whether to seek top surgery and what type of surgical procedure to have was taken from them due to their diagnosis (Taylor, 2016). In studies of cisgender male breast cancer patients, individuals wanted to have access to images of a
27 male chest post-mastectomy, as all available images represented cisgender women
(Williams, 2003). It stands to reason that transgender men may have similar requests.
Another psychosocial factor that may affect transgender individuals in relation to breast cancer risk assessment and screening is lack of social support. LGBT individuals with any type of cancer reported that their support structure included friends and “chosen family” as an integral component. Many transgender individuals have experienced rejection or ostracization from their biological relatives due to stigma. Studies have shown that 8% of transgender individuals reported being kicked out of their family home due to their transgender identity and 10% report having experienced violence in their family home (James, 2015). It is important to investigate to what extent this interferes with the communication of health information such as cancer diagnoses in the family or family health history information. Familial rejection is associated with negative health outcomes in transgender individuals (Ryan, 2009). Additionally, lack of relationship or communication with family members may interfere with the transmission of health information, such as a new cancer diagnosis in the family. An incomplete understanding of one’s family history of cancer can interfere with hereditary cancer risk assessment and counseling.
Despite the increased funding and attention that is being directed towards transgender healthcare, significant gaps in research remain. Little is known about the attitudes and beliefs that transgender men have about breast health and breast cancer screening. There is little guidance for genetic counselors who may see these patients about how to perform clinically appropriate and culturally sensitive risk assessment. Additionally, it is unclear
28 what recommendations should be made for these patients regarding breast screening and how their risk should be described.
Overview
This research aims to elucidate barriers to breast cancer screening and genetic risk evaluation for transmasculine individuals. Research questions aimed to determine what barriers interfere with breast cancer risk assessment in transgender men, the level of awareness transgender men have about breast cancer risk and screening, the factors that lead to positive or distressing conversations about breast health with these patients, and how healthcare providers can foster a safe and affirming environment that increases comfort and reduces perceptions of discrimination and gender related dysphoria with a focus on genetic counseling for hereditary breast cancer risk assessment. To achieve these goals, a descriptive survey was distributed to transgender male individuals using
Facebook groups and pages. This study was approved by The Ohio State University
Institutional Review Board.
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Chapter 2. Materials and Methods
Participants
This study used voluntary sampling to select participants. Individuals who identified as transgender males, transmasculine, or trans men were recruited by targeting social media groups. Participants were eligible if they were over 18 years of age, residents of the
United States or U.S. territories, a member of the aforementioned gender categories, and able to read and respond to questions in English. The Facebook platform allows individuals to share group posts and links, so the survey may have been distributed to individuals who were not members or followers of the groups that were directly solicited, but they did fit the eligibility criteria. It was not possible to track this alternate distribution.
Table 5. Groups in which a link to the survey was distributed.
Group Name Platform Number of Group Members/Subscribers Trans people and the allies Closed Facebook group 4473 who love them All transmen know each Public Facebook group 19097 other Trans Men Over 40 Closed Facebook group 1901 The Center for Sexual Organization Facebook 13116 Pleasure and Health page FTM 30 and Over Closed Facebook group 1837 Family Equality Council: Closed Facebook group 346 Parent Groups Rainbow Murderinos Closed Facebook group 3281
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Procedures
Recruitment was performed by contacting the moderators or administrators of Facebook groups targeted towards transgender or LGBT individuals more broadly. Search terms
“LGBT” (an abbreviation for lesbian, gay, bisexual, and transgender individuals/communities), “trans”, “FTM”, “transgender”, “transmen”, and “transman” were used to identify groups with high frequencies of individuals identifying as transgender men. The Center for Sexual Pleasure and Health is an organization known to the author with a known LGBT following, and was also used for recruitment. A logo was designed using the transgender flag (Appendix C), the caduceus (a symbol of medical profession), and the text “Share your voice! Seeking Transgender Men for a Research
Questionnaire about Healthcare. Help us improve healthcare for trans men and enter to win an Amazon gift card” and was used in posts recruiting participants. This logo was accompanied by the text "Research Survey for Trans Men. Are you trans masculine,
FtM, or a trans man and over 18? Do you want to help improve healthcare for trans people? Would you like to be entered to win one of ten $10 amazon gift cards?"
Measures/Material
Study data were collected and managed using REDCap electronic data capture tools hosted at The Ohio State University. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing 1) an intuitive interface for validated data entry; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data
31 downloads to common statistical packages; and 4) procedures for importing data from external sources (Harris, 2009).
Survey format and questions were reviewed by three members of the transgender male community to assess for cultural clarity. Terminology that may not be familiar to all individuals, such as “self breast exam” were defined in lay terms. Additionally, efforts were made to construct questions using language familiar to those with and without experience with speech common to many in the transgender community (eg. “top surgery” was used as well as “mastectomy”).
A waiver of consent document was designed (Appendix A) and was displayed on the initial survey landing page. The complete survey text is available to review in Appendix
B. Sections 1 and 2 of the survey were Likert scales with answers ranging from 0 to 5, with 0 designated as “not at all important” and 5 designated as “extremely important” for section 1 and 0 designated as “no distress” and 5 designated as “most distress possible” for section 2. Section 1 questions were designed to capture what things patients believe to be most important to them in a medical setting. Section 2 was designed to identify sources of distress in a medical setting or related to discussions of hereditary cancer risk.
A two-part question to determine gender identity and transgender status was suggested by The Williams Institute report in collaboration with the Gender Identity in U.S.
Surveillance (GenIUSS) group, a multi-disciplinary and multi-institutional collaboration, and we employed this technique in the survey design (GenIUSS Group,
2014). The two-part design of this question is used to disambiguate sex assigned at birth from gender identity.
32
Question 3 is an open-ended response question asking what things a healthcare provider could do to improve healthcare experiences when discussing screening for breast cancer to allow for individuals to provide information that we did not anticipate with the designed questions.
The question “Have you ever delayed seeking medical care due to fear of discrimination?” has been used in other research into healthcare disparities as a measure of the impact that discrimination in healthcare settings has on individuals (James, 2016).
Prior studies have shown that individuals who have experienced discrimination are more likely to avoid or delay healthcare due to fear of discrimination, both for preventative care and when sick or injured (James, 2016). Demographic questions about income, education, and state of residence were included to assess the intersectional nature of transgender discrimination in the context of access to healthcare. Additional questions sought to assess what types of risk assessment and screening individuals had, what types of things they had done to transition, what they perceived their breast cancer risk to be, and their interactions with the healthcare system. These questions were designed for this survey and are not validated measures.
Analysis
Statistical support was provided by The Ohio State University Biostatistics Department.
Responses were automatically tabulated into spreadsheet format by REDCap software for analysis. Likert scale question responses (questions 1 and 2) were represented graphically to show display items ranked as more important and less important on average, and standard deviation is indicated in the text. For the open ended question
33
(question 3), responses were coded for content to identify common themes. Themes in responses were identified and quotes were categorized. When a response contained multiple ideas, it was split into respective parts as long as the meaning could be preserved. In the event that a quote contained several themes and they could not be separated while maintaining the meaning, a quite was cross-categorized. This is denoted in the results table. Responses of individuals who had a surgical history that included a top surgery were compared to those who had not. Additionally, responses of individuals who reported a history of healthcare discrimination are compared to those who did not report such a history. Pearson’s Chi Squared test with Yates’ continuity correction was utilized to determine significance. Means are provided for demographic information.
34
Chapter 3. Results
Demographics of Participants
A total of 127 individuals participated in this study. Eight were not included in the data analysis because they did not meet inclusion criteria. Therefore, 119 participants’ responses were used in the data analysis. To protect the participants from distress, answers were not required to each question, so the denominator used in calculations may vary from question to question. Most participants described their gender identity as male
(N=65, 54.6%), followed by gender non-conforming (N=21, 17.6%) and other (N=8,
6.7%). The majority of participants identified as White or Caucasian (N= 86, 72.3%) followed by Hispanic, Latinx or Spanish origin (N=8, 6.7%), Native American, American
Indian, or Alaska Native (N=5, 4.2%), Black or African American (N=4, 3.4%), and
Asian (N=3, 2.5%). Respondents were able to select all categories that described their racial/ethnic background. The average age of participants was 37.88 years (SD=27.95).
The most common level of educational attainment reported by participants was college degree or some college (n=58, 48.7%). The most commonly reported annual household income level was greater than $60,000.
Table 6. Demographics of participants.
Gender Identity N % Male 65 54.6 Gender Non-Conforming 21 17.6 Other 8 6.7 Not Answered 26 20.5
35
Table 6. Continued Age <30 47 39.5 30-39 years 29 24.4 40-49 years 18 17.7 50-59 years 18 15.1 60-69 years 7 5.9 >70 years 0 0 Race/Ethnicity (option to select multiple) Asian 3 2.5 Black or African American 4 3.4 White or Caucasian 86 72.3 Hispanic, Latinx, or Spanish origin 8 6.7 Native American. American 5 4.2 Indian, or Alaska Native Not Answered 24 20.2 Education Level High School or Less 27 22.7 Some College or College 58 48.7 Advanced Degree 10 8.4 Not Answered 24 20.2 Annual Household Income Less than $15,000 20 16.8 $15,000-$30,000 18 15.1 $30,000-$45,000 15 12.6 $45,000-$60,000 12 10.1 More than $60,000 27 22.7 Not answered 27 22.7
Transition
The most commonly reported transition intervention was the use of hormone therapy
(n=88, 73.9%). Choosing different clothing (n=86, 72.3%), chest binding (n=73, 61.3%), and using a chosen name (n=71, 59.7%), and changing legal name (n=63, 52.9%) were all endorsed by over half of participants. Of surgical interventions, top surgery was by 36 far the most commonly endorsed (n=55, 46.2%). Hysterectomy (n=21, 17.6%) and oophorectomy (n=18, 15.1%) were less common. The least common surgical procedure endorsed was phalloplasty, with only one participants reporting the procedure (0.8%).
For individuals who selected “other” responses included metoidoplasty (n=4) “trying to get too [sic] surgery,” “Grew and wear facial hair,” “Currently in the process for top surgery and hysto simultaneously,” “I have been dressing like a man and have had those mannerisms since I was a toddler. I will be changing my name legally finally in a few months. Then off to top surgery if I can afford it”, “all documents updated to legal name and gender including birth certificate,” “vaginectomy, testicular implants, glans”, “in the process of medical transition but haven't started yet,” “Lifting weights and losing weight for more masculine appearance,” and “legally amended birth certificate.”
37
Other 7.6%
None of the Above 0.0%
Changed Legal Gender ID 48.7%
Changed Legal Name 52.9%
Use a Chosen Name 59.7%
Phalloplasty 0.8%
Oophorectomy 15.1%
Hysterectomy 17.6%
Top Surgery 46.2%
Hormone Therapy 73.9%
Chest Binding 61.3%
Change Clothing 72.3%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Percent of Participants
Figure 1. Transition actions endorsed by participants by percentage.
Interactions with the Healthcare
To further examine the experiences of transgender male and AFAB gender variant individuals, participants were surveyed about their experiences with healthcare. Of those who answered the question, 55.8% percent (n=53) of participants reported that they sometimes tell healthcare providers that they are transgender, 40.0% (n=38) reported always telling their healthcare providers, and 4.2% (n=4) reported that they never tell
38 their healthcare providers. The question was unanswered by 20.2% of participants
(n=24).
Never, 4, 4%
Always, 38, 40%
Sometimes, 53, 56%
Always Sometimes Never
Figure 2: How often participants disclosed that they are transgender to healthcare providers (N, %).
Participants were asked to assess the importance of various interventions intended to improve healthcare for transgender individuals. This consisted of a Likert scale with 0 being not at all important and 5 being extremely important. Of the suggested interventions, the average measure of importance was greater than 3 out of 5 for all, indicating a moderate to high level of importance. “The front desk refers to your gender correctly” had an average importance measure of 4.7 out of 5 (SD= 0.60), which was the highest average importance score. “Being asked about your pronouns on an intake form” had the second highest average importance score (M=3.97, SD=1.25). “Having people of
39 your gender represented in the printed materials you are given” and “Your healthcare provider uses non-gendered language” were scored as (M=3.3, SD=1.59) and (M=3.1,
SD= 1.60).
The front desk refers to your gender 4.7 correctly
Your healthcare provider uses non-gendered 3.1 language
Having people of your gender represented in 3.3 the printed materials you are given
Being asked about your pronouns on an 3.8 intake form
0 1 2 3 4 5
Figure 3. How important the suggested interventions were to participants based on a Likert scale of 0-5 with 0 being not at all important and 5 being extremely important.
Participants were asked about what type of healthcare providers they saw on an annual or more frequently than annual basis. They were able to select as many responses as were appropriate. The most common response was primary care physician (n=63, 67.7%).
The next most common response was endocrinologist (n= 13, 14.0%). Four participants
(4.3%) reported that they do not see any healthcare providers at least once a year. Only one participant (1.1%) reported seeing an Obstetrician/Gynecologist annually. This
40 question was unanswered by 26 participants (21.8%) and averages are based on only the number of participants who answered this question.
Oncologist
None 4.30%
Other 10.75%
Psychiatrist 2.15%
Endocrinologist 13.98%
OBGYN 1.08%
PCP 67.74%
0% 10% 20% 30% 40% 50% 60% 70% 80% Percent of Participants Figure 4. Healthcare providers seen on an annual or more than annual basis. (PCP= primary care physician, OBGYN= Obstetrician/Gynecologist)
Participants most commonly reported receiving medical care in a private practice setting
(n=47). The next most common location was large hospitals or academic medical centers
(n=30), followed by specialty gender clinics (n=27). The least common setting for receiving healthcare was reportedly a community hospital or small hospital (n=18).
41
Other 15.1%
Specialty Gender Clinic 22.7%
Private Practice 39.5%
Community or Small Hospital 15.1%
Large Hospital or Academic Med. Center 25.2%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
Percent of Participants Figure 5. Where participants reported receiving medical care.
Cancer Experiences of Participants
A total of six participants (5.0%) reported a personal diagnosis of cancer. If only the individuals who completed the question are used for analysis, this gives a total cancer rate of 6.3%. Of the individuals diagnosed with cancer, one was diagnosed with DCIS, which was detected in the tissue removed during top surgery at age 26. This individual met with a genetic counselor following their diagnosis. They had a grandmother with breast cancer at age 82 and no other family history of breast cancer. Another individual was diagnosed with papillary serous uterine cancer and had not met with a genetic counselor. They had a mother and grandmother with histories of breast cancer. One individual was diagnosed with breast cancer and met with a genetic counselor in
42 connection with that diagnosis. Another had been diagnosed with cervical dysplasia and squamous cell carcinoma on their lower back. A participant had melanoma on their nose and another had acute myeloid leukemia. One 51 y.o. participant selected “uncertain” and reported elsewhere in the survey that they had pre-cancer detected by pathology following top surgery and was now being referred for further evaluation. The other participant who endorsed meeting with a genetic counselor reported that this was related to their diagnosis of Ehlers Danlos Syndrome.
Overall, 20.2% (n=24) of participants reported a positive family history of breast cancer in at least one first or second degree relative. Four participants (3.4%) reported a family history of breast cancer in two or more first degree relatives.
Table 7. Personal history of cancer and genetic counseling for participants.
Personal History of Cancer n % Yes 6 5.0 No 88 73.9 Uncertain 1 0.8 Unanswered 24 20.2 Met with a Genetic Counselor Yes 3 2.5 No 89 74.8 Uncertain 3 2.5 Unanswered 24 20.2 Family History of Breast Cancer One first or second degree relative 20 16.8 ³ Two first or second degree relatives 4 3.4 Total reporting family history 24 20.2
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Breast Cancer Screening
Over their entire lifetime, 82.1% (n=78) of participants who answered the question reported having at least one clinical breast examination. Some individuals (n=15, 15.8%) reported never having had a clinical breast examination and two participants (2.1%) were uncertain if they had ever had a clinical breast examination. Since beginning to transition
60.0% (n=57) of participants reported having had a clinical breast examination, while
37.9% (n=36) had not, and 2.1% (n=2) were uncertain.
100% 90% 82.1% 80% 70% 60.0% 60% 50% 37.9% 40% 30%
Percent of Participants 20% 15.8% 10% 2.1% 2.1% 0% Yes No Uncertain Yes No Uncertain Lifetime Since beginning transition
Figure 6. Percent of participants who had a clinical breast exam in their lifetime vs since beginning to transition. Non-answers not included in analysis.
Since beginning to transition, 20.4% (n=19) of participants who answered the question had a clinical breast exam at least once a year. Thirty percent (n=28, 30.1%) had a clinical breast exam every few years or less. Eleven percent (n=11) of participants were uncertain about the frequency with which they had received a clinical breast exam but did 44 endorse having had at least once since beginning to transition. Thirty-eight point seven percent (n=26, 38.7%) of participants had never had a clinical breast exam since beginning to transition.
45% 38.7% 40%
35% 30.1% 30%
25% 20.4% 20%
15% 10.8% Percent of Participants 10%
5%
0% Once a year or more Every few years Never Uncertain
Figure 7. How often participants had a clinical breast exam since beginning to transition
Overall, nearly half of participants who answered the question (n=46, 48.4%) do not perform self-breast examinations, while 44% (n=42) perform them occasionally. Only
7.% of respondents (n=7) reported performing self-breast examination on a monthly basis. Following top surgery, the percentage of individuals who never performed self- breast examination increased to 63.6% (n=35). A similar proportion still performed them
45 monthly (n=5, 9.1%) and 27.2% (n=15) reported occasionally performing self-breast examinations.
Yes, monthly, 7, 7%
No, never, 46, 49%
Yes, occasionally, 42, 44%
Yes, monthly Yes, occasionally No, never
Figure 8. Participants performing self-breast examinations (N, %).
46
Yes, monthly, 5, 9%
Yes, occasionally, 15, 27%
No, never, 35, 64%
Yes, monthly Yes, occasionally No, never
Figure 9. Participants performing self-breast examinations since having top surgery (N, %).
The majority of participants who answered the question reported that they had been asked about a family history of breast cancer at least once during their lifetime (n=71, 74.7%).
Eleven percent point six percent (n=11, 11.6%) reported that they had never been asked about a family history of breast cancer and 13.7% (n=13) were uncertain.
47
Uncertain, 13, 14%
No, 11, 11%
Yes, 71, 75%
Yes No Uncertain
Figure 10. Has a healthcare provider ever asked about your family history of breast cancer? (N, %)
Among all participants, 61.7% (n=66) had never had a mammogram and 38.3% (n=41) had at least one mammogram. Among participants over age 50, the majority had at least one mammogram (n=13, 92.9%). Among participants under age 50, 81.3% (n=65) had never had a mammogram, while 18.8% (n=15) had at least one mammogram.
48
100%
90%
80%
70%
60%
50% 92.9% 40%
Percent of Participants 30%
20% 38.3%
10% 18.8%
0% All Participants Age <50 Age <50
Figure 11. Participants who endorsed having had a mammogram during their lifetime.
Participants were asked what type of healthcare provider had asked about their family history of breast cancer and could select as many answers as were appropriate. The most common response was that they were asked by a primary care doctor (n=60, 50.4%).
Other common responses were endocrinologist (n=17, 14.3) and OBGYN (n=21, 17.6%).
For participants who selected “Other” (n=11, 9.2%), the most common write-in response was surgeon (n=7), with some participants specifying that this was the surgeon who performed their top surgery.
49
Other 9.2%
Geneticist or Genetic Counselor 0.8%
Psychiatrist 3.4%
Endocrinologist 14.3%
OBGYN 17.6%
Oncologist 25.0%
Cardiologist 8.0%
Primary Care Doctor 50.4%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Percent of Participants
Figure 12. Type of healthcare provider who asked participants about their family history of breast cancer.
Breast Cancer Risk Perception
Participants were asked about their perception of their lifetime breast cancer risk.
Individuals who had top surgery were most likely to estimate their breast cancer risk as low risk (n=29, 49.2%) compared to those without top surgery (n=9, 22.2%). Individuals without top surgery were most likely to estimate that their risk was average for someone assigned female at birth (n=21, 55.6%). Similar proportions of each group felt that their risk was likely to be higher than average (n=7, 16.9% for individuals without top surgery)
(n=10, 16.9% for individuals with top
50 surgery). Similar proportions also estimated that they had no risk to develop breast cancer (n=2, 5.6% for those without top surgery) (n=5, 6.8% for those with top surgery).
16.9% Higher than average 16.7%
22.0% Average for someone assigned female at birth 55.6%
5.1% Average for someone assigned male at birth 0.0%
49.2% Low risk 22.2%
6.8% No risk 5.6%
0% 10% 20% 30% 40% 50% 60% Percent of Participants
Top Surgery % No Top Surgery %
Figure 13. Perception of lifetime breast cancer risk for those with and without top surgery by percent. Non-answers were excluded for this analysis
Measures of Distress
Participants were asked to rate healthcare situations on a Likert scale from zero to five with zero being no distress and five being the most distress possible. Being asked about a family history of cancer by a healthcare provider (M=0.66, SD=1.21), being asked about a family history of breast cancer specifically (M=0.82, SD=1.22), asking family members
51 about a family history of any type of cancer (M=0.83, SD=1.40), speaking about family in general to a healthcare provider (M=0.8, SD=1.30), and asking family members about a family history of breast cancer (M=0.98, SD=1.50) were rated on average to be the least distressing with average distress scores of less than 1. Being misgendered by a healthcare provider was rated the most distressing on average (M=4.10, SD=1.00). Other items rated as more highly distressing were “visiting an OBGYN office” (M=3.65,
SD=1.50), “being given only female focused medical brochures or handouts” (M=3.59,
SD=1.40), “having an internal pelvic exam” (M=3.60, SD=1.67), and “sitting in a waiting room with only female focused décor” (M=3.3, SD=1.66). On average, participants rated that touching their own breasts or breast tissue (M=1.75, SD=1.80) and performing a self- breast exam (M=1.83, SD=1.80) were less distressing than getting a clinical breast exam from a healthcare provider (M=28, SD=1.80).
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Being asked about a family history of any type of cancer by a … 0.66 Speaking about your family in general to a healthcare provider 0.8 Being asked about a family history of breast cancer by a healthcare … 0.82 Asking your family members about a family history of any type of … 0.83 Asking your family members about a history of breast cancer … 0.98 Touching your own breasts or breast tissue 1.75 Doing a self breast exam 1.83 Going to any medical appointment 2 Talking about your breasts or breast tissue with a healthcare provider 2.57 Being asked about your breasts by a healthcare provider 2.59 Bringing up concerns about breasts or breast tissue with a … 2.59 Getting a clinical breast exam from a healthcare provider 2.8 Disclosing transgender status to a healthcare provider 2.82 Sitting in a waiting room with only female focused decor and posters 3.3 Being given female only focused medical brochures or handouts 3.59 Having an internal pelvic exam 3.6 Visiting an OBGYN office 3.65 Healthcare provider misgenders you when speaking to you 4.1
0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5
Figure 14. Average reported scores for measures of distress related to various healthcare situations with 0 being no distress and 5 being most distress possible.
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Experiences of Discrimination
When asked whether they had experienced discrimination related to their gender identity from a medical professional, 50.5% (n= 48) reported that they had, 30.5% (n=29) had not, and 18.9% (n=18) were uncertain.
Uncertain, 18, 19%
Yes, 48, 50%
No, 29, 31%
Yes No Uncertain
Figure 15. Participants who reported having experienced discrimination from a medical professional related to their gender identity. Non-answers have been excluded from this analysis. (N, %)
When asked if they had ever avoided or delayed seeking medical care when sick or injured due to fear of discrimination, 63.2% (n=60) of participants reported that they had,
26.3% (n=25) had not, and 10.5% (n=10) were uncertain. Participants who had reported 54 experiencing healthcare discrimination reported avoiding or delaying seeking care at a higher rate (83.3%, n=40) compared to those who reported that they had not experienced healthcare discrimination (34.5%, n=10). This difference was statistically significant (p=
9.642e-05).
100% 90% 83% 80% 70% 63% 60% 48% 50% 40% 35% 26% 30% 17% 20% 11% 11% 6% 10% 0% All Participants Experienced Discrimination Denied Descrimination
Yes No Uncertain
Figure 16. Whether participants had ever delayed or avoided care when sick or injured due to fear of discrimination based on gender identity for all participants and stratified by whether or not participants reported having experienced discrimination in a healthcare setting. Non-answers have been excluded from this analysis. (N, %)
The average measure of distress score for participants who had experienced discrimination was 2.43 compared to 1.86 for those who did not report having experienced discrimination. Certain items showed a larger difference between the distress scores of individuals who had experienced discrimination and those who had not experienced discrimination. These items “Being asked about your breasts by a healthcare
55 provider” with a distress score 0.96 points higher on average for those with a history of discrimination, “bringing up concerns about breasts or breast tissue with a healthcare provider” with a distress score 0.96 points higher on average for those with a history of discrimination, “touching your own breasts or breast tissue” with a distress score 0.98 points higher for those with a history of discrimination, and “sitting in a waiting room with only female focused décor and posters” with a distress score 0.97 points higher on average for those with a history of discrimination
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1.86 Going to any medical appointment 1.94 0.66 Asking your family members about a history of breast cancer specifically 1.15 0.62 Asking your family members about a family history of any type of cancer 0.98 0.52 Speaking about your family in general to a healthcare provider 1.12 3.04 Being given female only focused medical brochures or handouts 3.77 0.66 Being asked about a family history of breast cancer by a healthcare provider 0.68 0.52 Being asked about a family history of any type of cancer by a healthcare provider 0.69 1.83 Being asked about your breasts by a healthcare provider 2.79 3.17 Visiting an OBGYN office 3.85 2.59 Sitting in a waiting room with only female focused decor and posters 3.56 2.69 Disclosing transgender status to a healthcare provider 2.98 1 Touching your own breasts or breast tissue 1.98 1.14 Doing a self breast exam 2.02 2.28 Getting a clinical breast exam from a healthcare provider 2.85 1.83 Bringing up concerns about breasts or breast tissue with a healthcare provider 2.79 1.97 Talking about your breasts or breast tissue with a healthcare provider 2.65 3.24 Having an internal pelvic exam 3.54 3.86 Healthcare provider misgenders you when speaking to you 4.33
0 1 2 3 4 5 Has not experienced healthcare discimination Has experienced healthcare discrimination
Figure 17. Measures of distress stratified by whether or not participants have experience healthcare discrimination
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Going to any medical appointment 0.08 Asking your family members about a history of breast cancer specifically 0.49 Asking your family members about a family history of any type of cancer 0.36 Speaking about your family in general to a healthcare provider 0.6 Being given female only focused medical brochures or handouts 0.73 Being asked about a family history of breast cancer by a healthcare provider 0.02 Being asked about a family history of any type of cancer by a healthcare provider 0.17 Being asked about your breasts by a healthcare provider 0.96 Visiting an OBGYN office 0.68 Sitting in a waiting room with only female focused decor and posters 0.97 Disclosing transgender status to a healthcare provider 0.29 Touching your own breasts or breast tissue 0.98 Doing a self breast exam 0.88 Getting a clinical breast exam from a healthcare provider 0.57 Bringing up concerns about breasts or breast tissue with a healthcare provider 0.96 Talking about your breasts or breast tissue with a healthcare provider 0.68 Having an internal pelvic exam 0.3 Healthcare provider misgenders you when speaking to you 0.47
0 0.2 0.4 0.6 0.8 1 1.2
Figure 18. Average difference between distress scores of participants who reported experiencing healthcare discrimination compared to those who had not. Note: average scores for those experiencing healthcare discrimination were all higher on average. Non-answers have been excluded from this analysis
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Of individuals who had experienced healthcare discrimination, 39.6% (n=19) reported always telling their healthcare providers that they are transgender compared with 45%
(n=13) of those who had not experienced healthcare discrimination.
Always Sometimes Never
Never, 2, 4%
Always, 19, 40% Sometimes, 27, 56%
Figure 19. Among participants who reported having experienced healthcare discrimination, whether they told healthcare providers that they are transgender. (N, %)
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Never, 1, 3%
Always, 13, 45% Sometimes, 15, 52%
Always Sometimes Never
Figure 20. Among participants who reported not having experienced healthcare discrimination, whether they told healthcare providers that they are transgender. (N, %)
Participants who had top surgery were more likely to never perform self-breast examinations (n=22, 55.0%) than participants who had not had top surgery (n=20,
36.4%). Participants who had not had top surgery were most likely to report occasionally performing self-breast examinations (n=22, 55%) compared to those with top surgery
(n=20, 36.4%). Five participants reported that they perform monthly self-breast examinations even after top surgery (n=5, 9.1% vs n=2, 5% for those without top surgery).
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54.5% No, never 40.0%
36.4% Yes, occasionally 55.0%
9.1% Yes, monthly 5.0%
0% 10% 20% 30% 40% 50% 60% % of Responants
Top Surgery No Top Surgery
Figure 21. Self-breast examination frequency reported by participants with and without top surgery.
Recommendations from Participants
Participants were asked what their healthcare provider could do to improve their healthcare experience with discussing and screening for breast cancer and fifty-one individuals provided responses. Responses were categorized by topic and responses with more than one suggestion were separated into multiple parts or cross-categorized when required to preserve the meaning. Responses have not been edited to correct spelling or grammar. Language use was referenced by 24 participants and included using gender neutral language, using correct pronouns, using an individual’s preferred language for body parts, and using an individual’s preferred name. Twelve participants discussed various topics related to the clinic experience including having inclusive waiting areas or specialty clinics, increasing patient comfort, signaling support of the transgender
61 community using flags or signs, and training all clinic staff that a patient may encounter.
Eight participants brought up topics related to discussing breast cancer risk or lack thereof. Seven participants discussed increased education for providers related to transgender healthcare or specific topics related to transgender health. Five participants discussed topics related to normalizing breast cancer in males or as a not exclusively female topic. Four participants encouraged the use of inclusive educational literature and marketing materials in the healthcare setting. Three participants referenced discussions about breast cancer as a particularly difficult topic. Two participants discussed increasing access to transition related care such as top surgery.
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Chapter 4. Discussion
The prevention and detection of breast cancer in transgender males is a critically understudied issue that has a high degree of impact on this population. Evidence-based guidelines for transgender male individuals with various transition-related factors or hereditary risk factors have not been developed, so there is no clearly delineated path forward for patients or providers. This population experiences high levels of discrimination in healthcare settings, with many individuals reporting delaying or avoiding care when sick or injured due to fear of discrimination. They may experience a high degree of dysphoria and distress related to breast-related healthcare. This research describes the experiences of transgender male individuals with healthcare discrimination, transition, and breast cancer screening and risk assessment. It suggests specific interventions that may increase the comfort of these individuals in the context of breast cancer screening and risk assessment.
Aim 1. Barriers to Breast Cancer Risk Assessment in Transgender Men
Experiences of discrimination in healthcare settings are a barrier to cancer risk assessment in transgender men. As discussed previously, the minority stress model demonstrates that individuals who have experienced higher levels of discrimination
(enacted stigma) may be more likely to expect discrimination, perceive discrimination, and conceal identity (felt stigma). In previous studies, 70% of transgender adults in the
United States reported having experienced discrimination in medical settings, 33% reported delaying seeking preventative care out of fear of discrimination and 28% delayed care even when sick or injured (Grant, 2011)(Lambda Legal, 2010). In our
63 study, 51% of participants reported experiencing discrimination from a medical professional related to their gender identity. While 63.2% of participants reported delaying or avoiding care when sick or injured due to discrimination based on gender identity, this increased to 83% for participants who reported having experienced discrimination in a healthcare setting. Of those without experiences of healthcare discrimination, only 35% had delayed or avoided care when sick or injured. Clearly, experiences of discrimination in healthcare settings are a barrier to healthcare generally for transgender men.
On measures of predicted distress, the average score was higher for individuals who had experienced healthcare discrimination, which is consistent with the minority stress model assertion that experiencing enacted stigma can lead to higher levels of felt stigma and distress overall. This theory stipulates that individuals who have experienced discrimination are more likely to perceive discrimination in the future. Those who had not experienced healthcare discrimination were more likely to seek out care, more likely to tell providers that they are transgender, and have lower levels of distress associated with various aspects of a healthcare experience. Decreasing discrimination experienced by transgender patients is key to reducing healthcare disparities. However, it is also important to acknowledge that we may not be able to control all healthcare experiences of an individual and thus trauma-informed care that acknowledges a likely history of healthcare discrimination may be essential.
Lack of information about family history or lack of collection of this information by healthcare providers may be another barrier to assessment of these individuals.
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Information about family history of breast cancer and other cancers is routinely collected in numerous medical settings to determine if an individual is at increased risk for developing certain types of cancer (Flynn, 2010). If a provider determines that an individual has a family history concerning for a possible hereditary cancer predisposition, they may refer an individual for genetic counseling and genetic testing. It is essential for healthcare providers to ask transgender individuals about family history of cancer in order to generate appropriate referrals for hereditary cancer risk assessment.
Without collection of this information by healthcare providers who routinely see these patients, a referral to genetics may never be initiated.
While asking a transgender male individual about family history of breast cancer may provoke anxiety for healthcare providers, the participants in our study indicated that being asked about a family history of breast cancer was likely to cause a low level of distress (distress score of 0.82 out of 5), which was similar to the distress score for being asked about a family history of any type of cancer (distress score 0.66 out of 5). It may be important to determine through future studies if providers typically overestimate the amount of distress that this question causes these patients and to educate providers that it is an important and well-tolerated question.
No previous research has determined how frequently transgender male individuals discuss their family breast cancer history with their medical providers. We found that the majority of individuals who reported that they had been asked about family history of breast cancer were asked by their primary care provider, endocrinologist, or OBGYN.
However, only 67.7% reported seeing a primary care provider on an annual basis (n=63,
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67.7%), only 14% saw an endocrinologist annually, and only one participant (1.1%) reported seeing an Obstetrician/Gynecologist annually. Prior studies have shown that transgender individuals are less likely to have a primary care doctor than average, and less likely to have a routine physical in the past year (Meyer, 2017). Thus, even when patients are being asked about family history of breast cancer, this information may not be routinely updated due to infrequent interactions with the providers who are most likely to ask. One participant stated “The only doctors who have discussed this at all since starting transition are my surgeon and my endocrinologist. It should have been asked by more primary care givers” – 33 y.o. In the write-in portion of this question, 10 participants indicated that their surgeon had asked about this family history. This means that only a quarter of individuals who had top surgery reported being asked about family history of breast cancer by their surgeon. This gap is especially concerning because family history of breast cancer may influence the type of top surgery procedure that is most appropriate for an individual.
One ideal time for risk assessment and genetic counseling for transgender male individuals may be before an individual undergoes top surgery. Identifying individuals who are at high risk for developing breast cancer, such as those with identified pathogenic genetic variants in associated genes and those with elevated risk predictions based on risk models, may influence their surgical decision making. An individual at elevated risk should be educated about the differences between a risk reducing mastectomy and the various types of top surgery, as well as the limited ability to screen residual breast tissue.
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Additionally, many genes associated with increased breast cancer risk also increase the risk for other cancers such as ovarian cancer. Family history of breast cancer is still relevant to discuss with individuals following top surgery not solely due to residual breast cancer risk, but because a family history of breast cancer may be a red flag for other cancers. Transgender male individuals might use genetic risk information when discussing the possibility of hysterectomy, as these procedures do not always remove the ovaries and fallopian tubes in addition to the uterus.
Aim 2. Awareness of Breast Cancer Risks and Screenings
When participants in this study were asked what they perceived their breast cancer risk to be, several interesting trends emerged. Similar proportions of individuals with and without top surgery perceived their risk to be higher than average (16.1% and 17.9% respectively). Additionally, similar proportions of individuals with and without top surgery perceived themselves to be at no risk to develop breast cancer (8.1% and 5.1% respectively). The two categories differed most when comparing between the average risk for someone assigned female at birth and the low risk category. Of individuals without top surgery, 53.8% perceived that their risk was average for someone assigned female at birth while only 20.9% of individuals with top surgery believed the same.
Individuals who had top surgery were most likely to perceive their breast cancer risk to be “low” (46.9%) compared to 23.3% of individuals without top surgery. Thus, it appears that generally individuals perceive their risk to be lower following top surgery.
The majority of individuals who had top surgery did report that they still have a residual risk of breast cancer. However, it is interesting that the percentages of individuals
67 perceiving themselves to be at either high risk or no risk were similar between the two groups. Prior studies have not clarified the absolute breast cancer risk for transgender male individuals who have had top surgery, who have not had top surgery, and for those in the previous categories with or without a hereditary breast cancer predisposition syndrome. Further research should clarify what the risk level is in reality for these individuals and to determine how individuals develop their perception of their risk.
In the written response portion of the survey, several individuals remarked upon their breast cancer risk and how it had or had not been addressed in medical settings. An individual said “Remember that it [breast cancer screening] is still important even after top surgery”- 32 y.o. indicating that they are aware of a risk that remains but that it may not be addressed to their satisfaction by their providers. Another respondent stated “I’ve had top surgery so most don’t even think to ask so actually recognizing that I could develop breast cancer would be nice”- 21 y.o., which is consistent with the understanding that breast cancer can still develop after top surgery and that they feel that this risk is under recognized by healthcare providers. An individual who had not had top surgery shared similar concerns, “[The] provider could be less dismissive about concerns that may arise. While I do have plans to have breast tissue removed, I don’t want to be told
‘well you’re having it removed, so don’t worry about it’” – 21 y.o. On the opposite end of the spectrum one individual said “This survey goes along with the assumption that the trans man taking it has not yet had top surgery if wanted. I personally have already had top surgery over a year now and no longer experience doctors asking me about my chest up front or what it used to be. They don’t even mention breasts or breast cancer.”—20
68 y.o. It appears that this individual is quite unaware that breast cancer can still develop after top surgery and it also seems as though their healthcare providers have not brought up the topic. Another individual stated that “[What a healthcare provider could do to improve their experience with discussing breast cancer risk is] none, had a double mastectomy 30 years ago” – 62 y.o. indicating that they no longer believe that they require this type of healthcare due to the lack of risk. Understanding of breast cancer risk after top surgery clearly varies between individuals. Until we understand more about what cancer risk is for individuals who have had top surgery, it may be important to acknowledge the knowledge gap when educating these patients.
In addition to varied understanding of breast cancer risk, breast cancer screening behaviors varied between participants, which reflects the general lack of recommendations for breast cancer screening in transgender male individuals. The
National Comprehensive Cancer Network recommends clinical encounter including clinical breast exam every 1-3 years as well as breast awareness for cisgender women at average risk between age 25 and 40, and annual clinical encounter including breast exam with annual screening mammogram for those over age 40 (NCCN 2018). While 82.1% of participants had at least one clinical breast exam during their lifetime, this number decreased to 60.0% since the beginning of an individual’s transition. In terms of frequency, since beginning to transition only 20.4% had a clinical breast exam at least once a year, while 30.1% had one every few years, and 38.7% never had one since stating to transition.
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Breast awareness and self-examination are also recommended for early detection of breast cancer. In this population 49% of participants never performed self-breast examinations. For those who had top surgery, that number increases to 64%. Following top surgery, imaging via mammogram is often not possible, so clinical breast exam and breast self-examination become more heavily utilized tools for cancer detection.
Participants rated getting a clinical breast exam from a healthcare provider as more distressing than doing a self-breast examination (distress score of 2.8 out of 5 compared to 1.83 out of 5). Further research is needed to determine whether the infrequency of breast self-examination and clinical breast examination are driven by lack of clear guidelines for screening, by discomfort by providers or patients, or by another unrecognized issue.
About half of individuals in this study had not had top surgery and would still be advised to undergo breast screening as is typically recommended for cisgender women, which, if followed as directed, brings them into female-centered spaces and exposes them to potential dysphoria on a frequent basis. For the 46.2% of participants who had top surgery, strategies for detection and prevention of breast cancer are less clearly delineated. Evidence based guidelines are needed to provide guidance for healthcare providers who care for these patients. Guidelines for breast screening in transgender individuals with and without top surgery are needed to provide guidance for patients and their healthcare providers to minimize distress while maximizing early cancer detection.
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Aim 3. Factors Leading to Positive or Distressing Healthcare Interactions about Breast Health
Several participants wrote about the importance of healthcare providers acknowledging breast cancer risk as a difficult topic for trans men to discuss as a way to minimize the distress of these conversations. . One participant stated that they wanted providers to
“Ask [about breast cancer] in the first place and be clear about the risks. Give information despite my avoidance of the topic”—42 y.o. This individual realized that this was a topic that required their attention but also acknowledged that they would likely be avoidant. Another participant wrote “Honestly, acknowledging that [breast cancer is] a hard topic for trans folks is one of the biggest steps”—21 y.o. Another wrote similarly,
“Just being open about [breast cancer] possibly being uncomfortable and that they understand that”—51 y.o. A suggested approach for providers based on these responses may be to acknowledge the potential discomfort with discussing the topic, clarifying why it is important to discuss, and provide clear information about risks.
Using the correct pronouns and name for an individual was rated as important on multiple survey measures as a way to decrease negative healthcare experiences. Individuals rated forms that ask about pronouns as important to their healthcare experience (average importance score of 3.8 out of 5). Being misgendered by their healthcare provider was ranked as the most distressing on average (average importance score of 4.1 out of 5). In the free-response portion, eight individuals mentioned using correct pronouns as important to improving their healthcare experiences. In this sample, 59.7% of individuals reported using a name other than the one that was given at birth but only 52.9% had changed their legal name. Therefore, it is important to ask what an individual wishes to 71 be called. As advocates for patients, genetic counselors can recommend and lobby for hospital electronic medical records to incorporate this type of information as a routine part of medical care. Additionally, forms internal to the genetic counseling practice, such as paper intake forms, family history questionnaires, etc. can be modified to include questions about this information.
Participants also endorsed the importance of being gendered correctly by all individuals in the healthcare setting, including those at the front desk who are not providing direct care. Being gendered correctly by the front desk had the highest importance score (4.7 out of 5). This is in alignment with recommendations made by many groups including the University of California San Francisco guidelines as discussed previously. This underscores the importance of training for all individuals who a patient may encounter during their interactions with the healthcare system, not just healthcare providers.
Ten respondents suggested the importance of mirroring the patient’s language for their anatomy to increase their comfort in a healthcare setting. Genetic counselor education frequently discusses the importance of using an individual’s language for their own diagnosis, and this may be translated into using an individual’s own anatomical terms.
One respondent recommended “Ask what is comfortable with the patient (e.g., Do you want me to use anatomical language or other language for certain parts of your body?” -
55 y.o.. “Another suggested “don't use the term 'breast'--say chest tissue or something neutral.” -25 y.o.. A slightly different take on this issue was expressed by another participant, “Use neutral scientific language”-30 y.o, which would suggest the use of
“mammary tissue” as an alternative to “breast” or “breast tissue.” Mirroring the patient’s
72 language for their own anatomy has been described by numerous guides for LGBT healthcare including the Fenway Health Institute’s “IMPROVING THE HEALTH CARE
OF LESBIAN, GAY, BISEXUAL AND TRANSGENDER PEOPLE: Understanding and
Eliminating Health Disparities”. This research supports the importance of this concept in the care of transgender individuals. While it may cause some professional discomfort to decrease the specificity of the terminology being used, failing to mirror the language of a patient may harm the establishment of a therapeutic relationship and may cause patients to experience gender dysphoria.
Aim 4. Creating a Safe and Affirming Clinical Environment
Prior studies have determined that transgender individuals are often subjected to unnecessary invasive questioning or physical examinations while interacting with the healthcare system (Samuels 2018). Patients frequently report experiences such as questioning about or examination of their genitals at a visit where that is not essential, such as an urgent care visit for an upper respiratory infection (IBID). They often report being seen as a curiosity or an “interesting case” and being observed by students or providers uninvolved in their case, which echos the experiences of individuals with rare genetic conditions who genetic counselors frequently work with. In the context of a breast cancer risk assessment, questions about specific surgical procedures, hormone treatments, and other details of an individual’s transition are frequently relevant, as discussed previously. Asking questions about risk reducing surgeries, reproductive history, and hormone exposure may all in effect ask transgender male patients intimate questions about things they have done to transition. It may be useful to start by
73 explaining the relevance of these questions so that the patient knows that this is not questioning based on the curiosity of a provider. Contracting could be an opportunity to set the groundwork with patients about the potentially uncomfortable topics that may be discussed in the session. In situations where this type of information is not relevant to a counseling session, this type of questioning should be avoided.
The gendered nature of the cultural discussion surrounding breast cancer may be difficult for transgender male individuals. Breast cancer clinics and spaces may be highly female- focused and it may be distressing for these individuals to navigate these settings.
Participants rated receiving printed materials with individuals of their gender represented as being moderately important (average importance score of 3.3 out of 5). They rated being given female only focused medical brochures as distressing (average distress score of 3.59 out of 5). Participants also discussed inclusive materials in their free responses.
One individual said “Providers could also use more literature representative of transgender people in their offices. It’s awkward being given literature that doesn’t talk about how a transgender man can prepare for invasive exams or procedures”—27 y.o.
Another individual suggested “non-gendered marketing materials”—28 y.o. While many materials about topics such as breast health, self breast exams, and hereditary breast cancer are available, these typically focus on cisgender women or occasionally cisgender men who are at increased risk due to genetics. Materials should be developed to aid in discussing these topics with transgender individuals.
Additionally, participants rated sitting in a waiting room with female-only focused décor as being moderately distressing (average distress score of 3.3 out of 5). This discomfort
74 was reflected in the written responses by a number of participants. One states, “Don’t have me, a Trans man, sit in a women’s centered clinic waiting room for a long time, when getting pelvic or breast exams”—54. Another stated “Mammograms and OBGYN appointments [are] super awkward when you are the only guy in the waiting room who is not there with a pregnant wife […] Try having hairy boobs and getting a mammogram”—
48 y.o. These individuals highlight the discomfort of existing in these female centered medical spaces.
Several individuals made suggestions for improving the clinical environment to address these concerns. On individual suggested “Have separate appointment times or arrangements for OB/GYN breast exams, etc. for transmen so we are not sitting in a room full of pregnant women” – 59 y.o. Similarly, an individual expressed “I would like to see in my area a clinic devoted to transmen for mammograms and OBGYN issues”—59 y.o.
These individuals suggested the creation of a separate space or time where transgender male patients could experience a clinical environment that was focused on their needs rather than those of cisgender women. A slightly different suggestion was to create “non gendered waiting rooms”-28 y.o. which would presumably involve altering the clinical environment to remove highly gendered materials and where people of all genders could wait. Another suggested “Hire trans and nonbinary staff”—25 y.o. as a way to make the clinical environment more welcoming.
Five participants specifically encouraged providers to normalize breast cancer as a condition that can affect people of all genders. While the majority of cases of breast cancer occur in cisgender women, people of all genders can experience breast cancer.
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One participant wrote “Men can get breast cancer too, so I never understood why the focus is so much on women. I want to see healthcare providers acknowledging this and doing what they can to neutralize gender identification in the office, ie. asking about pronouns, providing men’s health information, etc.”-30 y.o. Another wrote “make sure they say that men (cis and trans men) can get breast cancer and should be screened for it”
-30 y.o. As discussed previously, the “pinking” of breast cancer has drawn critique from some breast cancer advocates (Koulata 2015). Disrupting this highly gendered marketing regarding breast cancer awareness may be essential to increase access to care and comfort for transgender male patients.
The limited education in medical schools about treating transgender patients has been noted in previous studies. Seven study participants commented on provider education in the free-response section as a strategy to improve their breast cancer related healthcare.
One participant stated “being more knowledgeable about breast cancer in post-op trans men”-22 as being an important issue. Another participant stated “take time to educate themselves and their staff on what it means to be transgender so when transgender patients come in, they aren’t the ones giving a lesson in their own biology” –20 y.o.
This echos some of the experiences of individuals seen by genetic counselors in the context of rare diseases who often need to inform their providers about their unique biology. Genetic counselors often work with rare disease patients and patient organizations to ensure that providers have resources about medical management for rare diseases. We may be able to take on a similar role in the care of transgender individuals.
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The issue of provider education becomes difficult in relation to breast cancer risk assessment because there is not a standardized breast cancer screening protocol for these patients to educate providers about. Genetic counselors often take on the role of educating other providers about genetics issues such as hereditary cancer. The American
Board of Genetic Counseling (ABGC) Scope of Practice document states that genetic counselors “plan, organize and conduct public and professional education programs on medical genetics, patient care and genetic counseling issues.” Issues for genetic counselors to educate providers on may include the importance of assessing family history of cancer for patients of all genders and surgical statuses, when to refer for genetic risk assessment, ambiguity of cancer screening recommendations for transgender individuals, psychosocial concerns to consider when working with transgender patients, and related issues. Participants in this study frequently received medical care at a private practice (39.5%), large hospitals or academic medical centers (n=25.2), and specialty gender clinics (n=22.7%), which indicates multiple settings where provider education would be required. While large hospitals and academic medical centers may have access to genetic counselors and genetics services, private practices and specialty gender clinics may not. Outreach to these providers by genetic counselors may increase provider knowledge about related topics.
Secondary Findings
The results of this study underscore the heterogeneity of transition experiences among transgender male individuals. No single intervention was reported by all participants.
Thus, it is important to clarify what each specific patient has chosen to do to affirm their
77 gender. Top surgery, bottom surgeries, and hormone therapy may all impact risks discussed in genetic counseling for hereditary cancer. Of surgical interventions, top surgery was by far the most commonly endorsed (n=55, 46.2%). Hysterectomy (n=21,
17.6%) and oophorectomy (n=18, 15.1%) were less common. Hormone therapy was endorsed by 73.9% (n=88). It would be inaccurate to assume that a transgender individual had experienced all of these interventions, or that they desire them.
Of the individuals surveyed, 46.2% had some type of top surgery. Thus, it is essential to consider prevention and detection of breast cancer for both individuals who have not had top surgery and those who have had top surgery. In this sample, 73.9% of participants reported using hormone therapy in their transition, so this is an issue that may have a wide impact on this population. It may also be important to further investigate the long- term use of androgen therapy in average risk individuals as well as those at increased risk for breast cancer based on genetic variants.
The gender identity of participants was also varied. The most common gender identity was “male” with 54.6% of participants identifying with this label. Gender non- conforming participants made up 17.6% of the sample, and “other” made up 6.7%
(unanswered by 20.5%). This is further evidence that a “one-size-fits-all” approach to treating transgender and gender variant individuals is insufficient to account for the variation in this population.
Out of the 119 participants, six reported a personal diagnosis of cancer. Two of these individuals received genetic counseling for hereditary cancer risk assessment. One was a participant with DCIS at age 26 detected by routine pathology following top surgery.
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This individual had a family history of breast cancer in a grandmother at 82. The other participant who was diagnosed with breast cancer, now age 42, reported no family history of breast cancer. Both of these referrals met NCCN guidelines for further genetic risk evaluation based on their age of diagnosis (<50 y.o.).
One participant reported a personal history of papillary serous uterine cancer diagnosed at age 54. This individual indicated that they had not met with a genetic counselor. While most endometrial cancer is not typically associated with BRCA1/2, there is debate within the scientific community regarding whether or not this particular pathology (papillary serous uterine carcinoma) is connected with BRCA1 and whether it should trigger a referral to genetics (NCCN Version 2.2019). Additionally, this individual reported a history of a mother and grandmother with breast cancer. Since the ages of diagnosis for these cancers were not reported, it is not possible to determine if NCCN criteria for hereditary breast cancer risk assessment were met. In general, endometrial cancer can be connected to several hereditary cancer predisposition syndromes, such as Cowden syndrome and Lynch syndrome (LS). As previously discussed, Cowden syndrome can be associated with an increased risk for breast cancer as well as other types of cancer and physical findings. The NCCN guidelines state that individuals with endometrial cancer should be evaluated for Lynch syndrome if they are diagnosed under age 50, have another synchronous or metachronous LS-related cancer, one or more first or second degree relative with LS-related cancer diagnosed under age 50, two or more first or second degree relatives with LS-related cancers at any age, predictive modeling showing
79 greater than 5% risk of MMR gene mutation, or a tumor showing mismatch repair deficiency (NCCN Version 2.2019).
Limitations
This survey was limited by the type of participant attainment. Participants were individuals who followed or were members of Facebook groups and pages related to
LGBT communities and issues. These individuals may not be representative of the entire transgender community. They may be more proactive about seeking information than other transgender individuals. The demographic information about our participants indicated that they were highly educated, with 48.7% having at least some college education. Additionally, individuals who have a higher level of fear of discrimination or abuse may be hesitant to click on groups or surveys about transgender-specific issues.
Alternately, individuals in these Facebook groups may be experiencing more distress due to their gender identity and be seeking out online communities for support. Individuals who have fewer socioeconomic resources, including the elevated percentage of transgender individuals who experience homelessness, may be less likely to have access to a computer or smart-device to complete an online survey. Overall, our sample was relatively young (M=37.88, SD=27.95), so some individuals may be too young to have had annual clinical breast examinations and mammograms. Another limitation was the participants who did not answer all questions. While the ability to skip questions was intentional to protect participants from experiencing high levels of distress, it does limit analysis.
80
Conclusions and Recommendations for Providers
This study aimed to elucidate barriers to breast cancer screening and genetic risk evaluation for transgender male individuals. Change is needed in healthcare settings to decrease experiences of discrimination and increase comfort for transgender patients.
This study suggests a number of steps that providers may take toward these ends.
Specifically, intake forms should ask about an individual’s pronouns and name, and these should be used even if they conflict with those that are legally specified. All employees of a healthcare organization need to use the appropriate pronoun and name for the patient. A patient’s preferred name for their anatomy should be obtained and used by providers. Providers can improve patient comfort by acknowledging that discussing breast health may be an uncomfortable or difficult topic for patients. Materials provided to patients, including promotional materials and educational resources, should reflect an individual’s gender identity or include individuals of various genders. Normalizing breast cancer as a disease that can affect people of all genders can be useful. Ideally, waiting areas and clinical environments should be either gender-neutral or provide a comfortable environment for people of all genders. This may involve waiting in an area with décor that is not solely female focused, a waiting area with other men, and one that specifically shows allyship with the transgender community through items such as flags and resources. Family cancer history should be obtained by providers and updated regularly, as this is well tolerated by patients and critical for accurate risk assessment.
Decreasing discrimination in healthcare settings may make individuals more likely to seek medical care, and therefore more likely to have a healthcare provider ask about
81 family cancer history. An ideal time for hereditary cancer risk assessment is prior to top surgery as it may impact surgical decision-making. However, this assessment remains relevant for individuals who have already had top surgery as it could impact future screening recommendations and additional surgical recommendations.
Genetic counselors can play an important role in transforming healthcare in ways that increase the likelihood that transgender individuals receive appropriate risk assessment and care. While the challenges of breast cancer risk assessment and screening are different for transgender individuals than their cisgender peers, their experiences echo other unique healthcare populations. Genetic counselors are uniquely situated to be allies to transgender patients due to our education about psychosocial counseling, experience with patient empowerment, and interactions with populations who face challenges such as lack of medical education about their unique needs. Genetic counselors may act as educators for other healthcare providers about hereditary cancer, patient care, and genetic counseling issues related to risk assessment for transgender patients. Since transgender patients see providers in a variety of healthcare settings and specialties, wide-reaching outreach may be needed. Additionally, genetic counselors may participate in direct outreach to transgender-focused organizations and groups to provide information about genetic risk assessment and cancer screening. Participants described extremely varied perceptions of their risk for breast cancer and described varied breast cancer screening.
Direct outreach to this population can help educate about what is currently known about these topics.
82
Further study is needed to quantify breast cancer risk for transgender individuals of various surgical and hormonal statuses and to provide evidence-based recommendations for screening and risk reduction. This data is needed for transgender individuals at average risk and those who have an increased risk due to a hereditary cancer syndrome or other factors. Future NCCN recommendations and breast cancer risk models should include transgender individuals and take into account the impacts of various transition- related interventions. Until these recommendations are undertaken, breast cancer risk cannot be properly addressed in this population and transgender patients may suffer the consequences.
Transgender individuals experience significant challenges in accessing safe and gender affirming healthcare. In particular, breast cancer screening and risk assessment are understudied and under recognized components of transgender healthcare. This study has identified avenues for improving healthcare for these individuals. Addressing the specific healthcare needs of the transgender community is a critical step towards decreasing health disparities and improving the lives of these individuals.
83
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Appendix A. Informed Consent
IRB Protocol Number:--- IRB Approval Date:--- Version:--- The Ohio State University Consent to Participate in Research
Study Title: Transgender male patients and hereditary breast cancer risk: broaching difficult topics to reduce healthcare disparities Researcher: Robert Pilarski MS, LGC, MSW; Julia Coltri BA Sponsor: The National Society of Genetic Counselors Cancer Special Interest Group
• Subject rights: Participation in this research is entirely voluntary. You are free to stop participating at any point and you are also free to choose not to answer a given question without penalty or loss of benefits to which you are otherwise entitled.
• Purpose of the study: The purpose of this study is to identify barriers to breast cancer screening and genetic risk evaluation in transgender male individuals in an effort to improve care and reduce healthcare disparities.
• Study tasks or procedures: You will complete a survey with questions about your medical history, family medical history, experiences with healthcare services, and factors that are important to you when receiving healthcare.
• Duration of subject’s participation: We expect this survey to take 20-30 minutes and there is no follow-up participation expected.
• Benefits: This research is intended to collect data that will help us improve healthcare for transgender individuals. Benefits to society may include improved healthcare experiences, better access to appropriate screening, and reduction of harms associated with inadequate medical care.
• Risks: The risks associated with this study include discomfort associated with some of the questions. You are free to skip any question that you find too distressing or to stop participating at any time. This survey may be completed on the computer or mobile device of your choice and it is suggested that you complete it in a private location with a secured internet connection if you are concerned about privacy. In 30 states it is legal for an individual to be fired for being transgender. Some transgender individuals report discrimination in housing, employment, and healthcare. We will work to make sure that no one sees your survey responses without approval. But, because we are using the 102
Internet, there is a chance that someone could access your online responses without permission. In some cases, this information could be used to identify you.
• Confidentiality: You will not be asked to provide any identifiable data on this survey. All survey responses will be kept on password secured servers in the Division of Human Genetics at The Ohio State University and the secured program RedCap will be used to collect responses. We will work to make sure that no one sees your survey responses without approval. But, because we are using the Internet, there is a chance that someone could access your online responses without permission. In some cases, this information could be used to identify you. This survey may be completed on the computer or mobile device of your choice and it is suggested that you complete it in a private location if you are concerned about privacy. In 30 states it is legal for an individual to be fired for being transgender. If you provide an email address to enter to win an Amazon gift card, your responses will not be linked to your email address. They will not be included in any parts of the research. Individuals who win the gift cards will receive an email notification without any information about the topic of the research study to protect privacy.
• Contacts and Questions:
• For questions about your rights as a participant in this study or to discuss other study-related concerns or complaints with someone who is not part of the research team, all the Office of Responsible Research Practices at (614) 688-8457 or (800) 678-6251 • For questions about this research contact Julia Coltri at [email protected] or PI Robert Pilarski at the Department of Human Genetics 614-293-6694
• Incentives: Individuals participating in this study will be eligible to provide an email address to be entered to win one of ten $10 gift cards to Amazon.com. Participants do not need to complete this survey in order to be eligible. Gift cards will be distributed following data collection. Providing an email address is entirely optional and will be used solely for the purpose of providing this incentive. The chance to win a gift card is approximately 1 in 20.
• Sponsor: This research has been funded in part by The National Society of Genetic Counselors Cancer Special Interest Group
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Appendix B. Survey Tool
How important is this to you [0-5 with 0 being not at all important and 5 being extremely important]
1) Being asked about your preferred pronouns on an intake form (example: he, she, they, etc. 2) Having your gender identity represented in the printed material that you are given 3) Your healthcare provider uses non-gendered language 4) The front desk genders you correctly (example: calls you sir if you identify as male)
How distressful do you find the following situations? [0-5 with 0 being no distress, 5 being most distress possible]
1) Healthcare provider misgenders you when speaking to you (example: refers to you as “ma’am” when you identify as male 2) Having an internal pelvic exam (an exam of the internal organs, often using gloved hands and a speculum) 3) Talking about your breasts or breast tissue with a doctor 4) Bringing up concerns about breasts or breast tissue with a healthcare provider 5) Getting a clinical breast exam from a healthcare provider 6) Doing a self breast exam (This is an exam where an individual uses their own hands to feel for any abnormalities in breast tissue) 7) Touching your own breasts or breast tissue 8) Disclosing transgender status to a healthcare provider 9) Sitting in a waiting room with only female focused décor/posters 10) Visiting an OBGYN office 11) Being asked about your breasts by a healthcare provider 12) Being asked about a family history of any type of cancer by a healthcare provider 13) Being asked about a family history of breast cancer by a healthcare provider 14) Being given female only focused medical brochures or handouts 15) Speaking to your family in general to a healthcare provider 16) Asking your family members about a family history of any type of cancer 17) Asking your family members about a history of breast cancer specifically
1. What things could your health care provider do to improve your health care experience with discussing and screening for breast cancer? [Free text] 2. What is your gender identity? a. Male b. Female c. Genderqueer, nonbinary, or gender nonconforming 104
d. other gender (please state below) i. If OTHER, what is your gender identity? [Free Text] 3. What gender were you assigned at birth (what is on your original birth certificate)? a. Male b. Female 4. Some people identify themselves as transgender when they experience a gender identity other than the one they were assigned at birth (what is on your original birth certificate). Do you consider yourself to be transgender? a. Yes, transgender female to male b. Yes, transgender male to female c. Yes, gender non-conforming or non-binary d. No, I am not transgender 5. What are your preferred Pronouns for public use? a. they/their/theirs b. he/his c. her/hers d. hir/hirs e. xe/xis f. other, please specify i. If OTHER, what are your pronouns (free text) 6. What things have you done, if any, to transition (Please check all that apply) a. change clothing b. chest binding c. hormones d. chest reconstruction/ top surgery/surgical removal of breasts e. hysterectomy (removal of the uterus) f. oophorectomy (removal of the ovaries) g. phalloplasty (surgical construction of a penis) h. used a different name i. changed legal name j. changed legal gender identifier k. none of the above l. other, please specify i. If other, please describe (free text) 7. Do you disclose your transgender identity to your doctors? a. Always b. Sometimes c. Never 8. Have you ever delayed or avoided care when sick or injured due to fear of discrimination based on your gender identity? a. Yes b. No c. I am uncertain 105
9. Have you had a clinical breast exam in your lifetime? This is an exam where a healthcare provider examines an individual’s breast tissue for abnormalities a. Yes b. No c. I am uncertain 10. Have you had a clinical breast exam since you started to transition? This is an exam where a healthcare provider examines an individual’s breasts for abnormalities a. Yes b. No c. Uncertain 11. How often have you had a clinical breast exam since the beginning of your transition? This is an exam where a healthcare provider examines an individual's breast tissue for abnormalities a. Once a year or more b. Every few years c. Never d. Uncertain
12. Do you do self-breast exams? This is an exam where an individual uses their own hands to feel for any abnormalities in breast tissue a. Yes, monthly b. Yes, occasionally c. No, never 13. Have you done a self-breast exam since your chest reconstruction, mastectomy, top surgery, or surgical removal of breasts? This is an exam where an individual uses their own hands to feel for any abnormalities in breast tissue a. Yes, monthly b. Yes, occasionally c. No, never 14. Do you have a family history of breast cancer? Please select all family members who have been diagnosed with breast cancer. a. Mother b. Father c. Sibling d. half sibling e. maternal aunt f. maternal uncle g. maternal grandmother h. maternal grandfather i. maternal cousin j. paternal aunt k. paternal uncle
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l. paternal grandmother m. paternal grandfather n. child o. I do not know this information about my family history p. How many of each family member has been diagnosed with breast cancer? eg. 2 aunts, 3 sisters, etc. i. [Free Text] 15. Has a healthcare provider ever asked about your family history of breast cancer? a. Yes i. If YES, what type(s) of health care provider asked about a family history of breast cancer? example: primary care doctor, genetic counselor, OBGYN b. No c. Uncertain 16. What type of doctors or healthcare providers do you see regularly on a yearly or more frequent basis? a. Primary care b. Cardiologist c. Oncologist d. OBGYN e. Geneticist or genetic counselor f. Endocrinologist g. Psychiatrist h. Other- please specify i. [Free Text] i. NONE 17. Has a medical provider asked about your family history of breast cancer since the beginning of your transition? [y/n/uncertain] a. Yes i. If YES, what type(s) of health care provider asked about a family history of breast cancer? example: primary care doctor, genetic counselor, OBGYN ii. [Free Text] b. No c. Uncertain 18. Where do you receive medical care? select all that apply a. A large hospital or academic medical center b. A private practice c. A specialty gender clinic d. A community hospital or small hospital e. Other 19. Have you ever had a mammogram? a. Yes b. Yes, but not since transitioning 107
c. No, never 20. Have you ever been diagnosed with cancer? a. Yes i. What type(s) of cancer were you diagnosed with and what age(s) were you diagnosed? [free text] b. No c. Uncertain 21. Have you ever seen a genetic counselor? a. Yes i. If yes, was it before or after you began to transition [BEFORE/AFTER] b. No c. Uncertain 22. Why did you meet with a genetic counselor? a. [Free Text] 23. Have you ever experienced discrimination from a medical professional related to your gender identity? a. Yes [If yes, describe?] b. No c. Uncertain 24. What do you perceive your lifetime risk of breast cancer to be? a. No risk b. Low risk c. Average for assigned male at birth d. Average for assigned female at birth e. Higher than average 25. What is the income of your household per year? a. less than $15,000 b. $15,000-$30,000 c. $30,000-$45,000 d. $45000-$60,000 e. more than $60,000 26. How would you describe your ethnicity? (select all that apply) a. Asian b. Black or African American c. White or Caucasian d. Hispanic, Latinx, or Spanish origin e. Native American f. American Indian, or Alaska Native g. Pacific Islander or Native Hawaiian h. Middle Eastern or North African i. Prefer not to answer j. Some other race, ethnicity, or origin i. If other, please describe your ethnicity [Free text] 108
27. What is the highest level of education that you have completed? a. Elementary b. Secondary school c. High school d. Some college e. Associates f. Bachelors g. Advanced degree 28. What is your current state of residence? a. [dropdown menu with all states, other US territory, outside of the united states] 29. If you would like to be entered to win a $10 Amazon gift card, please enter your email address. We will not use this email for any other purpose and not providing it will not disqualify you from participating in this study a. [Free Text]
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Appendix C. Recruitment Materials
Share your voice! Seeking Transgender Men for a Research Questionnaire about
Healthcare. Help us improve healthcare for trans men and enter to win an Amazon gift
card.
(Graphic and text for Facebook distribution)
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Appendix D. Free Responses
Topic Quotes Language Use “Use neutral scientific language”-30 y.o. 24/51 responses “Continue to use my correct pronouns”-29 y.o.
“Ask for pronouns and gender identity and use them consistently.” -25 y.o.
“Ask what is comfortable with the patient (e.g., Do you want me to use anatomical language or other language for certain parts of your body?” -55 y.o.
“Just really focus on the perfered names/gender. I'm old enough to not let things bother me too much. But the perfered name/gender should be practiced.” -30 y.o.
“Making sure to use my correct pronouns” -26 y.o.
“Make sure to use the correct name and pronouns” – 40 y.o.
“Use the correct pronouns.” -54 y.o.
“Use the right name and pronouns” - 21 y.o. (cross-categorized)
“Ask how I personally refer to my body parts” -23 y.o.
“My provider knows I'm uncomfortable and is great about talking about chest tissue needing testing until top surgery, and possibly beyond.” -51 y.o.
“Use correct pronouns and non gendered language.” -32 y.o.
“I have had top surgery, so stop talking about my breasts and ask about my chest or pecs” -59 y.o.
“using chosen name instead of legal name” -55 y.o.
“don't use the term 'breast'--say chest tissue or something neutral.” -25 y.o. 111
“ask pronouns”- 44 y.o.
“Non gendered language, respect and use the terms I user for my own body (eg chest instead of breasts)” – 23 y.o.
“Better wording because we both already know what we are taking about.” -27 y.o.
“Use inclusive language” – 28 y.o.
“Using non gendered language” – 28 y.o.
“being sure that everyone n the practice looks at and uses preferred name and pronouns that r n my chart.” – 48 y.o.
“using correct pronouns” – 43 y.o.
“Discuss mechanisms, not identities. Ask my preferred language around my bodyparts” – 32 y.o.
“Using gender neutral language “ - 24 y.o.
“healthcare providers can just be openly honest about the information they need to collect alongside being conscious of our pronouns and gender identity, just ask.” – 20 y.o.
“total acceptance and understanding of my gender and pronouns” – 22 y.o. Clinic Setting “Just being understanding about trans and other lgbt issues. A 12/51 responses flag or sign in The lobby or on a name tag etc. […]Mammograms and ob gyn appts super awkward when u r the only guy n the waiting room who is not there w a pregnant wife lol. Try having hairy boobs and getting a mammogram.”-48 y.o.
“Hire trans and nonbinary staff.” -25 y.o.
“I have had mamograms and double mastectomy already it was done in a professional way I felt uncomfortable a little bit with the gown thing but it was o.k.” -61 y.o. male
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“Don't have me, a Trans man, sit in a women's centered clinic waiting room for a long time, when getting pelvic or breast exams.” 54 y.o.
“Sitting in a room full of women is uncomfortable.” -64 y.o.
“Have separate appointment times or arrangements for OB/GYN, breast exams, etc. for transmen so we are not sitting in a room full of pregnant women.” -59 y.o.
“Make your office more inclusive and have everyone go through Cultural Senetivety Training for LGBTQI+ people.” -59 y.o.
“not treating patients with different gender identities differently especially in front of other patients” -55 y.o.
“I would like to see in my area a clinic devoted to transmen for mammograms and ob gyn issues.” – 59 y.o.
“non gendered waiting rooms” – 28 y.o.
“Offer the opportunity to have my advocate or significant other present” – 55 y.o.
“Ask what is comfortable with the patient (e.g., Do you want me to talk while I'm doing this or do you want me to be silent? … Do you want the full exam or just certain parts of the exam? Do you want to listen to music or take something to reduce anxiety before your exam?)”-55 y.o. (cross-categorized)
Normalizing “Make sure they say that men (cis and trans men) can get breast Breast Cancer In cancer and should be screening for it.” -30 y.o. Males and Non- binary Individuals “not reference breast cancer as a female specific issue.” -29 y.o. 5/51 reponses “making sure not to only discuss women when talking about my risks.” -26 y.o.
“Posted information about breast cancer that is not for women only” -55 y.o.
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“Men can get breast cancer too, so I never understood why the focus is so much on women. I want to see healthcare providers acknowledging this, and doing what they can to neutralize gender identification in the office, ie. asking about pronouns, providing men's health information, etc.” – 30 y.o.
Fears about “It is not exactly related to this but my biggest fear and that of Healthcare many ftm friends is having something happen that I end up I. The 1/51 responses ER and someone thinks I'm a freak does t understand my packer etc. will they treat me fairly? Will they share my status with others?” -48 y.o. Increasing Access “Make top surgery easier to access and a lot of us won't have to Transition boobs to worry about.”-48 y.o. Related Services 2/51 responses “Getting top surgery pushed through more quickly would be excellent, especially when over 50 and this isn't a 'phase.'” -51 y.o. Not being treated “Not having to explain transgender to a provider who finds it as an object of interesting before having what I'm there for dealt with.” -48 y.o. curiosity or for education 1/51 responses Referrals “be sure any place I am referred has experience with trans 1/51 responses patients” -40 y.o. Training/education “Train more PCPs to be trans-aware.” -55 y.o. for healthcare providers about “Have more education for trans health care. Most providers do transgender not even know which bmi chart we should use. I do not mind patients educating but I shouldn't know more about trans health care 7/51 responses than they do.” -37 y.o.
“Educate themselves and their staff about gender transition and be empathetic to the diversity of all patients.” -43 y.o.
“Increase awareness of trans issues” -44 y.o.
“take time to educate themselves and their staff on what it means to be transgender so when transgender patients come in, they aren't the ones giving a lesson in their own biology”- 20 y.o.
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“Being more knowledgeable about breast cancer in post-op trans men.” – 22 y.o.
“Basic understanding of gender variance and being sensitive to trans experience.” – 27 Educational and “Provide trans friendly materials.” -54 y.o. marketing materials “…inclusive literature...” -21 y.o. (cross-categorized) 4/51 responses “Non gendered marketing materials” – 28 y.o.
“Providers could also use more literature representative of transgender people in their offices. It's awkward being given literature that doesn't talk about how a transgender man can prepare for invasive exams or procedures.”-27 y.o. Community “Community outreach”-44 y.o. engagement 1/51 responses Intake forms “Ask pronouns on the intake form separate from sex/gender as 1/51 responses mine don't match.” -22 y.o. Approaching “Ask in the first place and be clear about risks. Give information uncomfortable despite my avoidance of.the topic” -42 y.o. topics 3/51 responses “Honestly, acknowledging that it's a hard topic for trans folks is one of the biggest steps.“ -21 y.o. (cross-categorized)
“Just being open about it possibly being uncomfortable and that they understand that.” -51 y.o. Discussing (or not “The only doctors who have discussed this at all since starting discussing) breast transition are my surgeon and my endocrinologist. It should have cancer risk been asked by more primary care givers.” – 33 y.o. 9/51 responses “Talk about top surgery and the breast cancer risk that remains.” – 34 y.o.
“Provider could be less dismissive about concerns that may arise. While I do have plans to have breast tissue removed, I don't want to be told 'well, you're having it removed in a few years, so don't worry about it'” – 27 y.o.
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“Remember that it's still important even after top surgery” – 32 y.o.
“acknowledge what is known and what is unknown in trans people for these health issues”- 32 y.o.
“I've had Top surgery so most don't even think to ask so acrually recognizing that i could develop breast cancer would be nice.” – 21 y.o.
“This survey goes along with the assumption that the trans man taking it has not yet had top surgery if wanted. I personally have already had top surgery for over a year now and no longer experience doctor's asking me about my chest up front or what it used to be. They dont even mention breasts or breast cancer.” - 20 y.o.
“none, had a radical double mastectomy 30 years ago” -62 y.o.
“I know longer have breasts, but my provider stressed that breast exams by her were unnecessary if I was doing regular self- examinations and she did not make me undergo breast exams because I had a low risk for breast cancer.” -30 y.o “I dont have any issues with any healthcare treatment or Other appointments. I am very comfortable with myself and if, on the 4/51 responses off chance, I am misgendered I just laugh and say do I look like a woman to you?” -47 y.o.
“Just transparency, clearly asking for consent.” – 22 y.o.
“Ask what I'm comfortable with and explain options thoroughly. Thoroughly explain what's happening if they're touching me.” - 27 y.o.
“I have to go to a specialist now even though I had a double mastectomy due to precancer found on path report. My first appt is later this month.” -51 y.o.
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