Research focused on trans (individuals who have a different sex, gender identity, and/or gender expression than the one assigned to them at birth, often using hormones and surgery, to live as another gender. They are also referred to as transgender, transsexual, or gender nonconforming) populations’ health needs have been primarily focused on HIV/AIDS, mental health, and substance use issues. The existing body of literature clearly indicates that trans people frequently face a multiplicity of challenges to their health and well-being contributed by social and institutional factors [1] that lead to challenges to accessing relevant health care services [2, 3]; social services such as homeless shelters, addictions services, and sexual assault [4, 5]. Accessibility and relevance issues have also been documented in relation to harm reduction and HIV prevention work [6, 7]. Trans people often experience direct harassment and discrimination in institutional and broader social contexts [8, 9].

Although, less emphasis have been made on other health issues like cancer, extrapolating data from social determinants of trans health, one would anticipate the severity of health impact due to lack of access [10]. There has been studies examining the morbidity and mortality of trans people to see if hormone therapy is related to greater health risks and they generally found little health risks (including cancer) primarily associated with hormone use. However, the primary objectives of these studies were not to investigate cancer but to examine the prevalence of health problems resulting from hormone use [11–13] studies examining cancer among trans populations may underreport outcomes and may hide a higher incidence over time as their exposure to hormones increases [14].

Additional information is needed on understanding the issues trans people face in regards to cancer. The Institute of Medicine report identified the lack of research regarding cancer among transgender populations other than a small number of case studies examining the relationship between hormone therapy and hormone sensitive cancers (breast, ovaries, and prostate) [15]. But cancer is one of many issues in need of examination; trans people have reported many problems accessing health care which would exacerbate any health problem. Discrimination or the fear of discrimination would prevent trans people from seeking important health screenings that can identify cancers early.

Thus, there is very little information regarding transgender people’s experience with cancer. Additionally, it is important to understand how being trans can influence people’s experiences with cancer risk and cancer related health care rather than their overall risk for a diagnosis of cancer. The chapter will focus on these issues and develop a better understanding of the research and health care needs of trans populations.

The concern regarding hormone replacement therapy (HRT) and the health of trans people is that many cancers are sensitive to hormones. Many cancers have androgen and estrogen receptors that respond in the presence of hormones, and the concern was that providing large dosages of hormones could increase the manifestation and growth of hormone dependent cancers (i.e. breast, prostate, ovaries). Although the Standards of Care (SOC) published by the World Professional Association of Transgender Health (WPATH) generally identified various cancers associated with estrogen and testosterone use as “inconclusive or no increased risk” [16]. While the findings of studies examining the prevalence of cancer among those receiving HRT have been small and attributed to other factors like tobacco use [11–13]. These clinical samples provide limited understanding of predominantly race and ethnic homogenous groups of trans people. Differences in outcomes due to demographic characteristics such as age, race, ethnicity, and clinical characteristics such as length of hormone treatment are not addressed by these cases.

Studies examining the morbidity and mortality of trans people who have been receiving hormone therapy in the Netherlands and Belgium found trans women to have a slightly higher risk of mortality due to lung cancer and leukemia, while trans men’s cancer mortality was not different from the general population [11–13]. The explanation given for the difference in lung cancer may have been due to greater smoking among transgender populations. Cancer prevention approaches need to examine the underlying health behaviors among this population. It is also imperative to understand the social context of the disease.

Hormone therapy for the purpose of changing secondary sex characteristics requires higher dosage compared to what is given to cisgender (one’s gender identity is congruent with one’s sex assigned at birth) people for other reasons and this is the reason why many are concerned about the use of hormones among trans people [17]. While trans men are no longer exposed to high levels of estrogens, testosterone itself has been found to be associated with risk for breast and cervical cancers [18, 19], but studies did not find an increased prevalence of these cancers among trans men [11–13]. An important distinction, however, lies in the amount of time trans people have been utilizing exogenous hormones compared to their cisgender counterparts. For example, trans women may only be exposed to estrogen for a smaller percentage of their life compared to many of their cisgender counterparts (who do not have any medical issues that many require exogenous hormones). An additional issue that has not been discussed is the age where a person may stop taking or reducing their dosage. Currently, there is no consensus nor there is any solid evidence base on for a specific time span for hormone use, and many people may begin their transition much later in life when their endogenous hormones may be already diminishing. Time exposed to hormones may be an important factor needing greater investigation in understanding the hormone/cancer link among trans populations. This is especially important as more people begin their transition at younger ages and will have a longer time period using exogenous hormones.

The clinical studies provide a starting point in examining the hormone use of a homogenous group of trans people who are receiving care. Other studies have identified populations of trans people who utilize hormones from nonmedical sources [20, 21]. So we know that hormones when prescribed and obtained from medical sources have not been found to increase cancer risks [11–13], we do not know what the effect hormones taken without medical supervision and with varying dosage and quality [22].

Case studies investigating ovarian cancers among trans men were focused on whether these cancers had androgen receptors. One study found a sample that was found to have abundant androgen receptors (tumors were sensitive to androgens like testosterone) [23]. Another case study discussed finding ovarian cancer in two trans men after many years on testosterone, while another study reported finding uterine and cervical cancer on a trans men while performing sex reassignment surgery (SRS), and another finding vaginal cancer 18 years after receiving SRS [24, 25]. These case studies made a point to indicate that it is important to remove all their reproductive organs and associated structures. In important detail discussed is the men’s lack of gynecological care that could identify such problems early. A study by Peitzmeier et al (2014) found that compared to cisgender patients, trans men were more likely to have an inadequate Pap test (10.8 % vs. 1.3 % of tests) [26]. Their reasoning referred to a combination of physical changes induced by testosterone therapy and provider/patient discomfort with the exam. The implication of these case studies is that the specific experiences and medical care of trans people can impact important primary and secondary prevention activities regarding screening and early intervention.

A white trans woman who had genital surgery was found to have a stage III B anal cancer that required extensive surgery and reconstruction [27]. Additionally, the surgeon discussed the need to redo the vaginoplasty due to the importance to the patient. While anal cancer is not associated with any of the procedures related to transitioning from one gender to another, the perspective of the trans woman made this into a trans issue. The author stated that it was important for them to maintain the original surgery for the benefit of the patient. The experiences of trans patients can influence how they will respond to a diagnosis and treatment options.

Sometimes the people’s perception of cancer and their trans status may cause them and others to minimize their risk for cancer. A study discussed finding prostate cancer in a trans woman 31 years after SRS and use of conjugated estrogens [28]. The assumption was that castration would prevent the growth of prostate cancers. In regards to this case, two thoughts were discussed by the authors. The first was the possibility of the existence of cancer cells prior to castration, (the trans woman had her surgery at age 45). Since many trans women do not begin their transition prior to 45 years of age they may already be within the window of risk for prostate cancer (especially if they have other risk factors). A large community sample found 37 % of their sample of trans women to have transitioned (began to live full time as their identified gender) after 45 years of age [29]. Statistics for prostate cancer shows that greater risk is found for those 50 years of age and older (in 2010 the incidence for prostate cancer was 9.5/100,000 for those under 49 years of age and increases to 289.5/100,000 for those 50–65 years of age, and increases to 807,75/100,000 for those 65–74 years of age) [30]. This does not account for when (and if) they have some form of SRS that removes their testes. Another issue discussed by the authors is the possibility that the androgen receptors of the cancer became hypersensitive and did not need a large amount of androgens to be activated. One other case study made the same observation when they examined a trans woman with prostate cancer 41 years after initiating hormone therapy and had her testes removed 26 years prior [31]. Hormone therapy and SRS may not provide the protection against prostate cancer that it was once thought to provide to trans women.

A case study that exemplifies the concerns and fears trans people may have in regards to cancers that could affect their gendered appearance. An African-American trans woman was diagnosed with metastatic breast cancer [32]. Previous visits to her primary care doctor identified a lump in her left breast, but she declined mammography and biopsy. Her decisions to delay care until the cancer worsened was the result of numerous misconceptions and concerns regarding the procedure. She did not think she was at risk for cancer because she was trans, she described having “a male chest with hormones and silicone”. She assumed the lump was the result of silicone. She also felt that she was not at risk for cancer because “men and women cancers are different”. So being trans was in her mind protective against breast cancer. Additional issues included a preference for injectable hormones because the “pills can cause breast cancer”, and misconceptions about cancer in general (cutting into the cancer will make it spread).

There are two issues to take from this case study. Physicians do need to take more time and identify the sociocultural beliefs of their patients. The author identified sample questions that physicians can use to better understand their perspective. Being trans added an additional factor in that the woman in question saw her body as being different from other women and that influenced her perception of risk. Cancers associated with one’s breasts, prostate, and reproductive organs may prove to be very sensitive because of trans people’s relationship between their bodies and their identities. Addressing care for trans people will require extra care for these issues, especially in providing health education.

Reports on the prevalence and genotypes of HPV among trans populations are scarce in the literature. A recent study from Argentina reported 97.4 % HPV prevalence among 117 male to female transgender sex workers surveyed. High risk genotypes were detected in 82.5 % [33]. Two or more co-infecting HPV genotypes were found in 70.9 %. One case showed up to 10 different co-infecting types. The high HPV prevalence, the co-infection with multiple genotypes and the high frequency of high risk genotypes detected, together with the high HIV seroprevalence among trans women and extreme social marginalization, discrimination and stigmatization make this population extremely vulnerable to cancer risks [34]. Before planning long-term diagnostic and treatment strategies, it is imperative that we first address the issues of HPV awareness and willingness to participate in anal cancer screening for HIV positive trans people; thus, it is important to solicit perspectives of trans population community health advocates regarding anal cancer screening. Of course, these aspects need to be considered in the light of a major context in which social exclusion, limitations of the health system and STI-related stigma affect the access of trans populations to health care. Further, as a vulnerable population with a high HIV prevalence, HIV risk behaviors may place them at risk for hepatitis B and C and HPV, which have been found to be associated with various cancers [35–39].

Both the Institute of Medicine and National Institutes of Health have identified the need for greater research about the health disparities of transgender people [15, 40]. What is known from existing research is that many transgender people have experienced some form of discrimination or harassment related to their gender nonconformity and that discrimination has been linked to many risk behaviors that could increase their cancer risks. What is also known is that many of them struggle with substance use [41–49]. However, tobacco and alcohol use among trans people is less well known. Studies examining the tobacco and alcohol use among Lesbian, Gay, Bisexual, and Transgender (LGBT) populations do not differentiate between the different groups [50–53]. Studies have found those with experiences of discrimination due to their gender identity to smoke and to use alcohol more often [29, 53]. There is reason to believe that trans people may utilize tobacco and alcohol as a form of coping due to their disadvantaged status, and lung and liver cancer risk associated with smoking and alcohol abuse, respectively, is well established [54]. In addition, the social factors related to discrimination can also influence their utilization and access to important health related resources [55–57].

Discrimination can affect people’s access to health resources (employment problems and health insurance), coping resources (social support), and mental and physical health problems (depression and substance use) [57–60]. Experiences or even the perception of discrimination by health care workers can have a significant impact on a range of health outcomes specifically by influencing their help seeking behavior.

Health care service providers have found that getting trans people the services they need (e.g. primary health care, substance use treatment, and housing) can be difficult for several reasons. Many trans adults are denied insurance coverage because of their use of hormone treatment and a diagnosis of gender identity disorder. Some providers may not want to work with trans clients [61]. Lack of sensitivity on the part of health care providers themselves may adversely influence whether trans people will access treatment and remain within it [43–45]. Trans people might resist seeking treatment because others have reported past discriminatory treatment on the part of service providers.

The National Transgender Discrimination Survey (NTDS) identified many problems identified by trans people regarding their experiences with and access to health care. Within their sample of 6450 transgender identified people, 19 % reported being refused treatment by a doctor or other provider because of their transgender or gender non-conforming status [29]. Additionally, 28 % of their participants reported verbal harassment within the doctor’s office or other medical setting. Even more problematic, those who disclose their trans identity to their doctor were more likely to report being denied care (23 % vs. 15 %).

Even when trans people are able to access care, their provider may not have the information to properly care for them. Half of the study participants reported having to educate their provider on trans health issues. Among those most likely to report having to educate their providers were female to male trans people, those living full-time as their identified gender, and those on a public insurance program (Medicaid, etc.). The problems people experience with health care providers are not surprising, given the attitudes many physicians may have concerning trans people. Studies have found some physicians believe transsexual women to be emotionally disturbed or immoral [62]. Fortunately, there has been some improvement in physicians’ attitudes over time [63].

Given these issues many trans people will choose to postpone needed health care. Within the same study, 28 % postponed or avoided needed medical treatment due to discrimination or disrespect from providers, and 33 % postponed preventive health care [29]. In regards to cancer care, this means that many trans people are not receiving important cancer screenings and possibly delay care to a point when their cancer becomes too serious to treat effectively. An example is presented in the documentary, Southern Comfort, which follows the last year in the life of Robert Eads, an FTM transsexual who died of ovarian cancer when his attempts to find a medical provider failed because the doctors in his community did not want to treat a trans patient [64].

Trans people’s access to health insurance can also contribute to their postponement/avoidance of health care. Within the NTDS, 19 % reported not having health insurance, which is 4 % greater than that of the United States percentage (15 %) [65]. Many participants reported postponing needed medical care (48 %) and preventive care (50 %) because they could not afford it. Trans people’s relationship with health insurance have been very problematic [61]. The need for trans specific care creates additional hardship for people. Even individuals with insurance may have trouble accessing primary and gender specific health care. Only a few doctors and clinics make hormones and related procedures available to patients (and may not accept Medicare or Medicaid). Very few insurance companies allow sex reassignment procedures under their plans, leaving even those who do have health insurance with few options in accessing gender related medical care. Much of their medical expenses come out of pocket, and many times they will have to search to find a doctor/clinic that will provide them the care they need even if that means having two sets of providers: One for their trans related services and another for their other health care. This creates a problem when physicians may not know of each other’s existence and their ability to provide needed care to their trans patients.

While the reports above refer to the United States, these health care experiences are also common in European countries as well. In a report published by the International Lesbian and Gay Association (ILGA) approximately 20 % of the people they surveyed reported problems accessing non trans-related healthcare [66]. Follow-up reports that many people across Europe will avoid accessing any kind of healthcare due to the prejudicial treatment of healthcare professionals. The implication being that the problems faced by trans people is not unique to the US with its fee for service health care system, but also common within nations with state funded systems. The report also identified institutional-based systems for trans health care as providing poor care resulting from the power and control (the institutions have in regards to any form of trans health care) they exert over their trans patients. They concluded that health care providers do not have sufficient competency in treating trans individuals within their practice and require policies and procedures that will enhance their knowledge and prohibit discrimination.