“Everything's a fight”: A qualitative study of the cancer survivorship experiences of transgender and gender diverse Australians

2.1. Methodology

This qualitative study was part of a larger national Australian study, the Trans Health and Cancer Care Study, ⁴ and received ethical approval from the La Trobe University Human Research Ethics Committee.

2.2. Participants

Participants for the Trans Health and Cancer Care Study were recruited between September 2018 and January 2019, primarily via Facebook advertising, as well as via posters displayed in TGD‐specialist GP clinics, an LGBTQ+ bookstore, and via a TGD radio program. Participants were invited to provide their email address if they had been diagnosed with cancer and wished to participate in an interview about their experiences. Eligible participants for this study were TGD adults (≥18 years), who resided in Australia, had a prior diagnosis of cancer, and had completed treatment.

2.3. Procedures

Interviews were conducted by one researcher (LK) either in person, or via telephone or video call (Skype). Both written and verbal informed consent to participate in this study was obtained prior to each interview. At the time of the interviews, LK was a PhD candidate and specialist cancer nurse with experience in conducting interviews with TGD people. Interviews were semi‐structured, utilizing broad open‐ended questions designed to allow participants to direct the conversation. The interviewer asked additional questions seeking further detail and clarity based on participant responses. Overall, 12 interviews were conducted, ranging from 44 to 143 min in length, with an average length of 76 min. Two participant interviews were excluded from this analysis as participants did not meet the criteria for a cancer survivor. Specifically, one participant had a BRCA mutation and prophylactic mastectomy, and one participant had a hereditary, benign cancer syndrome. These participant interviews were included in the broader study published elsewhere. ¹⁴

2.4. Data analysis

Interviews were recorded and transcribed verbatim, and data were analyzed using thematic analysis. Transcripts were read in full and preliminary notes made prior to importing transcripts into NVivo for analysis. Transcripts were then reread and descriptive codes assigned to the text by one author (KL). Interviews were broad and included experiences of cancer diagnosis and treatment, however, only data describing experiences posttreatment were included in this analysis. Codes were continually refined throughout the data analysis process to generate the final coding framework that represented the breadth and depth of participant survivorship experiences. Codes were then analyzed to identify patterns in the data and develop themes, which were shared with the author team for refinement and agreement. Results of the thematic analysis are presented alongside direct participant quotes to provide evidence for and illustrate each theme. Participants are identified by code in the narrative (P1, P2 etc.), with gender identity provided for context (Table 1).

2.5. Positionality statement

The lead author (KL) is a Senior Research Fellow with experience in both qualitative methods and research in the areas of cancer survivorship and sexual and gender diversity. KL is a cisgender woman and an LGBTQ+ ally. She conducted this work in the pursuit of equity in care and outcomes for TGD people affected by cancer, however, acknowledges that she approaches this study (necessarily) from an outsider's perspective, with any knowledge brought forward from professional rather than personal experiences.

3.1. Anxiety and avoidance

A strong feature of the survivorship experience for TGD people was feeling stress or anxiety around attending follow‐up appointments, including necessary cancer screening. These feelings are specific to their TGD identity rather than or in addition to stress that may be felt due to their cancer history or fear of cancer progression. One participant described being trans in health‐care settings as “kind of a constant low‐grade stress” (P7, trans man), and another participant described the stress of attending follow‐up appointments as being in a state of hypervigilance “because I'm always waiting for someone to pick me, someone to say ‘you're not a woman’, and that in itself is very tiring” (P8, trans woman). Stress regarding cancer follow‐up for some participants was centered on needing to remove clothing during appointments (see Table 2).

Anxiety around attending medical appointments also leads to avoidance, with some TGD people saying they do not attend follow‐up at all, despite knowing the importance of cancer follow‐up care, or delay seeking care even when experiencing concerning symptoms: “I was thinking, ‘just go, you've had that melanoma,’ so what I do is I procrastinate my health as a direct result of the [previous bad] experiences” (P9, genderqueer). This is highly relevant for gendered screening services, where TGD people may feel particularly uncomfortable or conspicuous in gendered spaces: “certainly after coming out as trans I have not wanted to go into a specified place for screening for that exact reason of being the only man in a female's ward” (P10, trans man).

3.2. Transphobia and trans‐competency in health‐care settings

Anxiety surrounding follow‐up care may be due to expectations of discrimination or poor treatment, and based on prior transphobic experiences within health‐care settings. Transphobia was felt by TGD survivors in their interactions with some HCPs, including reception staff: “[Reception staff were] short and sweet, not as friendly as the person who may have been in the line before me or the person who may follow me” (P9, genderqueer). One participant felt that their surgical outcome was impacted by their gender identity and presentation, and that the surgeon had not taken the requisite care with removal of a facial BCC that they would have had the participant presented as a woman: “Compared to the next guy who did my mouth, like, he would not have matched a woman's lips up like that, you know, like distinct, not that I don't love the scar but I just go, ‘that's what homophobia is,’ a ‘less‐than’ attitude that means the outcome is really different” (P9, genderqueer).

Transphobic interactions also included verbal misgendering by HCPs, which made one participant feel like “everything's a fight” (P4, trans woman). Anxiety in health‐care settings may also result in people not wanting to disclose their gender or not correcting providers when they are misgendered. One participant described not requesting their preferred pronouns be used because “I try to get in and get out with the least homophobic experience as I can” (P9, genderqueer). Regarding asking for preferred pronouns to be used, another participant said they did not ask because “I was really too scared to, I felt like I didn't have a choice, it was just go with what you're given” (P6, nonbinary), even though being misgendered made them feel like “you're talking to someone else” (P6, nonbinary). Lack of inclusivity was also embedded in paperwork and administrative processes, where TGD identities were not accommodated. This included not having the required fields or options on patient records to input a patients' gender, pronouns, and preferred or chosen name, and not having processes in place to ensure that correct names and pronouns are used by HCPs, both verbally when attending services or in any subsequent documentation that is provided to the patient (see Table 2). Not recording and using preferred names was interpreted as an intentional action and rejection of TGD identity: “…they want to use their position of power to let you know that they don't accept your gender identity, and that's what it is, whenever they say anything about refusing to accept your name. Because people will say, if you tell them, ‘oh this is my name, that's my legal name,’ they'll say, ‘okay, well I'll have to put that on the form, we'll put that as preferred name,’ done, simple, but, you know, there's people who just have to make a point of saying, ‘I don't accept your gender identity,’ and that's the thing, ‘oh sorry we have to use the name on your documents.’ No, they don't. That's just them saying ‘sorry, I don't accept your gender identity, I'm going to use this small bit of administrative power to stick it in your face,’ that's how it makes me feel.” (P4 trans woman).

Most of the participants described transphobic encounters and interactions when attending cancer follow‐up care, however, one participant articulated the need for care that goes beyond being trans‐friendly to care that is competent in addressing the needs of TGD people. This participant described having to take on the role of educating HCPs: “Because I'm now read as male, going and seeing a doctor for something like a Pap smear, that's always a bit weird and they never know like how the testosterone interacts, like they're not trans‐competent, they might be trans‐friendly but that doesn't mean that they're trans‐competent, so I have to do a lot of educating as well” (P7, trans man).

3.3. Consideration of TGD bodies by HCPs

Maintaining TGD identity throughout and after cancer is critical to individuals' well‐being. Illustrating the essential nature of gender identity to TGD survivors, one participant described surviving childhood cancer as: “I definitely felt guilty because they'd saved my life and now I'm like, ‘I don't really like this life, this isn't how I want it’” (P10, trans man).

Despite the critical nature of maintaining TGD identity, participants described lack of consideration of their gender during and after cancer treatment. A common thread through participants' stories was unsatisfactory interactions with HCPs, particularly around overlooking their TGD status as an important part of their cancer experience, not considering the potential impact of cancer or treatment on their bodies, and making assumptions due to their TGD identity (see Table 2).

One participant who had undergone radiation therapy for bowel cancer described their distress at the physical side effects of treatment (“I can't have sex. I spent years with gender dysphoria, not being happy with what was there, and then I get to the stage where I can finally fix that and then two years later I can't use the thing, yes I'm a little bit distressed about that.” (P8, trans woman)) and the lack of discussion from HCPs regarding the impact of treatment on their body (“at no point had anyone ever said anything other than, ‘you might suffer some dryness,’ so I was a little disappointed with that, not having been given the full story, not having that time to prepare for that mentally” (P8, trans woman)).

For some TGD people, gender‐affirming hormone therapy is a key part of maintaining gender identity, and two participants described their experiences with hormone therapy during and after cancer treatment. One participant who ceased gender‐affirming hormone therapy during treatment for prostate cancer described the unwillingness of doctors to provide estrogen therapy as part of their treatment and their resulting “de‐transition” as highly distressing: “I still remember looking at my face every day in the mirror, watching my, like, adipose fat distribution slowly dissipate, that was the worst experience of my life. I would never de‐transition again… that was the most painful part of it” (P4, trans woman). Another participant was able to continue hormone therapy throughout treatment for testicular cancer, but did not receive follow‐up care with an endocrinologist: “No, they didn't stop my hormones, normally basically what they would've done they told me…they would just put me onto an endocrinologist, and then they would've put me on testosterone but because I was already on oestrogen they didn't even bother with any of that. Although, I probably should go and see an endocrinologist, that should've been done years ago” (P1, trans woman).

3.4. Physical aspects of TGD body in survivorship

There was substantial discourse regarding the physical aspects of living with and after cancer in a TGD body. Participants described a range of unique situations regarding how being TGD intersected with their cancer treatment and recovery, both positive and negative.

One participant described the challenge of being both trans and a cancer survivor, specifically regarding sexual dysfunction arising from cancer treatment: “I wanted to transition and have a boyfriend, I've craved for that time and I am reluctant to do that now because of the cancer, because of the vaginal stenosis…. as a trans person, it's hard enough as a single woman at 50 to find a partner…then, if you find someone that they're a bit interested in you, then to have to have the trans conversation, which I think at some point you've got to have that conversation… now if the guy hasn't left you then, then you've got to have this conversation about not being able to function maybe properly sexually” (P8 trans woman).

Some participants highlighted that cancer treatment interfered with gender affirming surgeries. In one case, a participant felt fortunate to have had cancer after transitioning: “I was also lucky, in hindsight, that I had my reassignment surgery before cancer, if I had it, well if I'd had cancer first I wouldn't have been able to have gender reassignment surgery… had I not been able to have that, for whatever reason, life would not have been worth living at all” (P8, trans woman).

For other participants with gender‐specific cancers, surgery that removed unwanted body parts was seen as beneficial and as a way of the body “getting rid of a piece that's not supposed to be there” (P1, trans woman). A participant with a history of testicular cancer stated: “…my testicles had caused so many problems for me throughout my life, I should never have had them… It's definitely been really beneficial actually, having them removed, like I just feel normal, I suppose, for the first time in my life” (P1, trans woman).

Further to this, many participants noted that due to their history with gender dysphoria, they were not bothered by surgical scars from cancer treatment, or liked their scars, as the experience of gender dysphoria was more distressing: “I've got this, you know, big scar down here from the bowel surgery and that doesn't bother me, not a bit, and I think to myself, ‘why doesn't that bother you? That should bother you,’ I think ‘no’, my body now is the way it should be as far as my gender dysphoria was concerned, having a scar there – couldn't care less” (P8, trans woman).

3.5. Lack of TGD resources and support

Participants described an absence of support that was relevant to them and their needs in the posttreatment phase, as well as a lack of information and resources where TGD people were represented: “…they had racks and racks of every type of cancer brochure you could possibly imagine… there wasn't one single word or picture anywhere through every document that even addressed gay, let alone trans, there was nothing about it” (P2 trans man).

Peer support services such as support groups and one‐on‐one support were often discussed, with participants highlighting the importance of peer support and the need to share experiences with people that had been through cancer. Peer support may be particularly important for trans people, who may have difficult or severed relationships with their families (“I don't have all the back‐stops that people [usually have], you know, just normal family and the family thing” (P2, trans man)), or be otherwise lacking in social support (“Well I've been isolated, I'm a trans woman, I've been isolated and rejected all my life (P4, trans woman) and “It's definitely made it harder, like, not having, not having like friends that I could ring and talk about it” (P7, trans man)).

The need for a “queer” support group for cancer survivors was voiced: “I just felt like there was a need out there to be with like‐minded queers who have experienced it, you know, our experiences, I feel, are so different than the average person, you know, who is probably married and got children, I just feel that we, I'm a non‐binary within a minority that, yeah, I'm just, yeah, I felt that quite challenging and at times that I'm quite alone. I hope one day there's more groups or there's something out there” (P5, nonbinary). Participants noted, however, that “support networks for trans people with cancer are non‐existent” (P1, trans woman) and when they did attend available support groups, participants described feeling out of place, or unable to connect with others (see Table 2).

3.6. Positive growth after cancer

The majority of participants described aspects of positive growth following their cancer experience, either in terms of their relationship with themselves and their bodies, relationships with others, or being more confident in themselves and assertive in their day‐to‐day lives.

In terms of individuals' relationships with their bodies, participants described treating their bodies with more respect and acceptance after cancer: “What it's made me do is be really aware to, like, I don't drink, I don't take drugs, I've recovered from addiction issues a long time, 15 years, and I really try to treat myself well” (P9, genderqueer). Connected to being more accepting of their bodies, many participants also described feeling more empowered to be themselves, and more confident in advocating for themselves (Table 2).

Some participants described fractured relationships with parents or their families due to their gender identity, and becoming closer due to cancer: “[my parents] went from hating me to helping me, in the space of a weekend” (P1, trans woman); and “Certainly this whole quote‐unquote trans thing has always been um kind of rocky for mum because she doesn't, she didn't understand for a long time… but in terms of the cancer experience, yeah we're pretty close because of it, I think, we've got a lot of mutual friends because of it, so yeah it's been a positive thing for mum and I” (P10, trans man).

4.1. Strengths and limitations

Very few studies have focused on the cancer experiences of TGD people, and even fewer have examined the posttreatment survivorship phase. To the best of our knowledge, this is the first qualitative study to focus on TGD cancer survivorship, without combining sexually and gender diverse people together. This study therefore addresses a critical knowledge gap, with data leading to suggestions for development of initiatives that may be implemented to improve care, support and experiences for this survivor group. We acknowledge a limitation of this study as a result of the recruitment approach, with potential participants responding to advertisements and opting to be contacted for interviews. As a result, those who responded to study recruitment information may include those who are more actively engaged in TGD spaces and communities, have social media access, and access TGD health services. Previous research has identified lack of trust in research and fear of being “outed” as barriers to TGD people participating in research studies ²⁴ ; therefore, it is possible that this study did not include voices of people who do not wish to be identified as TGD or those who may be uncomfortable with participating in research. This is an important limitation to acknowledge as these people may experience significant barriers and challenges when accessing cancer and survivorship care that may not be represented here.