“Mourning Parts You Dreamed of Losing—But Not This Way”: The Experience of a Nonbinary Person Diagnosed With Breast Cancer

Abstract

Purpose: Nonbinary breast cancer (NBBC) patients have unique healthcare needs that may not be met due to the gendered nature of breast cancer. Herein we explore the multifaceted experiences of an NBBC person. Methods: Qualitative intensive case study methodology was employed. Multisource data was gathered, including an in-depth interview, blogposts examination, and drawn comic evaluation analyzed using polytextual thematic analysis to generate themes. Methodologic rigor was pursued using member checking, maintaining an audit trail and holding several meetings to agree upon themes. Results: The participant's treatment included a double mastectomy, chemotherapy, and radiation. Using multisource triangulation, four themes were identified, named leading, negotiating, being in-between, and confining. Leading encompasses feeling the responsibility of paving the way for NBBC patients. The participant described, for instance, how their blogposts were created as a resource, to ameliorate the “lack of representation” they felt clinically and online. Negotiating encapsulates negative experiences in healthcare settings and having to mentally prepare before entering them. In both interview and blogpost, they mentioned “going into medical spaces [preparing] to be misgendered”. Being in-between highlights their intersecting identities shared in their blogposts, and the lack of support groups that supported their intersecting identities, “I felt like an island.” Finally, confining captures the lack of control they felt over their gender expression, which was especially salient during chemotherapy when they were hyperaware of how they were perceived “I don’t know if [people] see the baldness and flatness as a choice.” Conclusion: This individual experienced significant psychosocial stress from isolation, misgendering, and gender dysphoria magnified by the pink-washing of their breast cancer journey.

Introduction

Breast cancer is the second most common cancer diagnosis in Canada and the number one cause of cancer among women. ¹ Consequently, the narrative around breast cancer is highly gendered, often revolving around femininity and the accepted implications of breasts being inherently feminine. ² Breast cancer has long been represented to only impact cisgender women, which leaves gender-diverse individuals, including nonbinary people, excluded from the discourse and research. Nonbinary is an umbrella term for anyone that falls outside of the gender binary. Nonbinary encompasses a range of identities, including those that experience both male and female genders concurrently or separately, no gender, or may fall outside of these categories. ³

Recognizing the need for more inclusive care, breast cancer research is increasingly focusing on gender-diverse individuals, especially among binary transgender patients (trans women and trans men).^4,5 Research on nonbinary individuals with breast cancer is much less common and is often aggregated with other sexual and gender minorities.^6,7 To our knowledge only one article has been published focusing solely on a nonbinary individual with breast cancer, which was a case report outlining medical aspects of their care. ⁸

Although this research is important step in cancer research on gender-diverse individuals, there are some other considerations that warrant further research specific to nonbinary individuals. Nonbinary identities continue to be widely misunderstood and underrepresented. Some common misconceptions are that nonbinary individuals are confused, their identity is used for attention, or they will eventually identify as transgender men/women. ⁹ To move towards more inclusive and equitable care, we must understand the unique needs of nonbinary individuals, given the widespread discrimination and stigma that gender-diverse individuals experience coupled with pervasive medical mistrust.^10,11 The present study aims to explore multifaceted experiences of a nonbinary individual who has been diagnosed with a breast cancer and has undergone a bilateral mastectomy.

Materials and Methods

Qualitative case study methodology was employed to learn about a particular case, given their unique circumstances, and how their settings and context have impacted their experiences. Case studies, in contrast to case reports, are a distinct, much more involved and complex research endeavors that incorporate multiple sources of data. ¹² In-depth and rich descriptions allow for a deep understanding of the case and to help readers determine whether the findings are applicable to other relevant settings. The current study was inspired by the researcher (SC) seeing published blogposts from an acquaintance they met while serving on a committee together. Considering the uniqueness and rarity of their situation, we contacted the participant to gauge interest in sharing their story and experience through a research setting. Informed written consent was given by the participant at time of the interview, acknowledging that anonymity would be difficult to preserve.

The study was approved by the Health Research Ethics Board of Alberta (HREBA.CC-23-0388).

Data Collection

As recommended by Yin and Stake in their descriptions on methodologic rigor in case studies, multiple sources of data were collected including a semi-structured interview, blogposts, and artwork focusing on their cancer journey published prior to the study.^13,14 There were 11 published blogposts highlighting a certain part of their cancer journey which were accompanied by comic-style drawings or photos. The participant completed an hour long semi-structured interview in person conducted by one of the authors (SC). The participant was asked about their experience with their cancer diagnosis, treatment, and care, and how their gender identity impacted their experience.

Interviews were audio recorded, transcribed verbatim, and uploaded into NVivo (Version 12, QSR International), and analyzed alongside blogposts and artwork obtained from the participant's publicly published blog.

Demographic information was collected from one of the published blogposts and confirmed at the time of the interview.

Analysis

Textual data (ie, interview and blogposts) were analyzed following the steps of thematic analysis using a hybrid inductive-deductive approach. ¹⁵ Authors (SC, CTO) first familiarized themselves with the data by reading and re-reading the transcript and blogposts. Preliminary codes were developed using line-by-line coding. Codes are the smallest meaning unit in which segments of text are assigned a descriptive label that assists in organizing the data and eventually organize into themes. Visual data was analyzed using polytextual thematic analysis, which generally follows the same principles of thematic analysis in which visual elements are similarly assigned a code. ¹⁶ Codes were collated into broader themes, with preliminary descriptions. The participant reviewed the themes, to help further define and finalize descriptions.

Additional steps were taken to integrate both visual and textual data guided by Trombeta and Cox's ¹⁷ textual-visual thematic analysis framework. These additional steps included revisiting the coded interview and blogpost with the artwork and making notes about where the images reinforce or contradict the textual data, or when there were elements missing from either the text or images.

Rigor

Several approaches were taken to bolster qualitative rigor. Data triangulation occurred through the multiple sources of data and in the interpretation of data between co-authors. Member checking was employed, whereby the participant reviewed the analysis for accuracy. ¹⁴

Results

Case Description

To protect the privacy of the participant, their name has been changed. Taylor is a 31-year-old nonbinary individual (they/them pronouns) diagnosed with stage III invasive ductal carcinoma, which was estrogen positive. They underwent a bilateral mastectomy and received chemotherapy and radiation therapy. All treatment was done at a major cancer center in Alberta. They are a freelance artist and drag artist who had been sharing their cancer journey through blogposts and accompanying hand-drawn comics. At the time of interview, they had been out as nonbinary for 5-6 years and had legally changed their gender marker on government documents. They were on a low dose of testosterone for a year until they stopped for their cancer treatment.

Researchers

Qualitative data analysis was completed by two researchers: a medical student (SC) and a staff plastic surgeon (CTO). The medical student has a background in pediatric psychosocial oncology research utilizing mixed methods. The plastic surgeon (CTO) has a large reconstructive practice, including breast cancer patients. Having performed a breast reconstruction early career on an undeclared gender-diverse patient, who later wanted the breast reconstruction removed, awoke this practitioner to the importance of recognizing gender diversity in her cancer reconstruction patients.

Themes

The analyses generated 4 interrelated themes agreed upon by the researchers and subsequently reviewed and agreed upon by the participant. The participant illustrated the themes in a style that aligned with their comics (Figure 1). Table 1 includes the themes with representative quotes and is described below.

Figure 1.

Representative illustration for the 4 themes a) leading, b) negotiating, c) being in-between, and d) confining.

Table 1.

Themes and Representative Quotes.

Theme	Representative quote
Leading	“I tried to look up information about how testosterone interacts with estrogen positive breast cancer or other cancers too just to see if there's anything. […] There was a few [papers] which I'm like, “oh, maybe this will have something”. But a lot of it's still pretty inconclusive.” – Interview “Maybe it's because [specialists] see patients on a more personal level, they see less of them. You know, it's not all volume, but that was really nice” - Interview “I’ve heard many stories of breast cancer patients being pushed for reconstruction or a lumpectomy to avoid ‘destroying’ their boobs, and some not even being offered the option of an aesthetic flat closure. [The surgeon] not only accepted my decision, he’d noted that I was trans and researched top surgery so he could bring it into our discussion.” – Blog
Negotiating	“I was going into the medical spaces where I've always prepared to be misgendered. I have like, a ‘women's’ cancer. So, I have to go into this with that mindset as well.” – Interview “Being misgendered isn’t new to me in medical spaces so I carried on” – Blog “Sometimes gender doesn't even come up. Like in chemo, what are they going to ask about being nonbinary or even like pronouns? I don't even hear them use pronouns […] So, becoming a patient can kind of strip your identity. And I think that's dehumanizing. But it means I'm not being misgendered.” – Interview
Being in-between	“Being a cancer patient was more central to my identity than being nonbinary. Like it was erased in [queer] spaces […] Then like in medical spaces, a lot of the time the non-binary part was being erased. So, I couldn't quite find the space.” – Interview “It's funny because when you see [body hair loss] in breast cancer spaces reading about that and they're like, ‘ohh, that's one of the perks. You have no body hair. We love it.’ And I'm like, ‘I hate this. I want my body hair back.’ […] Some of these effects, I can't relate to because of the gendered nature of this cancer as well.” – Interview
Confining	“I find that chemo can ‘other’ you, or being a cancer patient too, if you look like [the typical cancer patient] you kind of become this like genderless ‘other’ thing in a way. So doing chemo and going into the chemo space, it's like a big open space with multiple people, but there's no like discussion about gender or anything. The nurses don't ask you anything.” – Interview “There's like a lack of control in how you get to present […] I think about how I’m perceived with a flat chest and bald. I'm like, do people see me as a cancer patient? Do they think I'm like a nonbinary person or like a weird tranny freak? Like what do they see?” – Interview “You never really have control about how people perceive you, but you can control your body in a way that makes you feel better. I think when you're perceived as sick at the level I am in treatment, people also kind of ignore you as well. It's not like a quirky thing anymore where you're like quirky cooky queer person. You're a sick person and people don't want to interact with you.“– Interview

Leading

The theme “Leading” encompasses the ways in which Taylor had to pave the way for other gender-diverse breast cancer patients. They cited multiple experiences in which they found gaps in care and had to either advocate or create their own spaces. Some gaps included the lack of information on testosterone's impact on breast cancer treatment and lack of diverse support groups.

Taylor created blogposts with hand-drawn comics as a resource for others and to share their story. The act of sharing gave a sense of purpose; however, the creation of the blog was also partially in response to the fatigue of having to explain their unique situation to others. They expressed carrying a heavy burden, feeling pressured to be the only representation, and having to share their trauma repeatedly.

I definitely get bitter about [sharing my story] sometimes. It's like Jesus died for your sins, I'm like the Jesus. I have to do this. I have to share this. And I sometimes do feel a bit bitter about it because I'm sharing trauma. (Interview)

This theme also captures instances when healthcare workers acted as leaders to create safe spaces which was reflected in the interview, blogposts, and comics. Some actions that were appreciated including sharing and asking for pronouns, and physicians listening to and respecting their choices especially surrounding discussions of fertility and chest reconstruction.

[The anesthesiologist] specifically [was] like, ‘I noticed on your file you're nonbinary. What pronouns do you use?’ Which is great. That was amazing. My expectations are so low. Just like when someone does that, it just gives me so much morale. (Interview)

Notably, Taylor shared how they felt the specialists were more inclusive and welcoming because the volume of patients was less, giving the specialists more time to spend with each patient.

Negotiating

Taylor shared how they faced constant reminders of not fitting into the standard of breast cancer patients. This was discussed in one blogpost featuring a comic about pink-washing, a marketing strategy that employs breast cancer symbol and coloring to superficially promote products or services, shown Figure 2. Ironically, before diagnosis Taylor shared that they loved pink and went on to explain why they chose their color palette for their comics: “Breast cancer is the most branded cancer out there, and it's probably the most gendered one. So, I chose pink [for my comics]. It's like a reclamation.”

Figure 2.

Representative comic for the theme “Negotiating”, figure reproduced with permission from Copyright Holder.

Screening and their initial workup were completed through a Women's health center where they were often presumed to be female. These reminders would often stain the rest of the encounter, leading to discouragement. Taylor experienced ongoing internal negotiation on when to bring attention to their nonbinary gender. One blogpost shared: “I did notice that [the nurse] refer to me incorrectly to others a few times, but I was never going to see her again, so I didn’t care to insert myself into her conversations” with a comic shown in Figure 3. Some barriers were systemic, such as the mammogram machine requiring their gender marker to be female before starting the scan.

Figure 3.

Representative comic for the theme “Negotiating”, reproduced with permission from the Copyright Holder.

Negotiating also encompassed expectation setting (eg, mentally preparing to be misgendered at the women's clinic) as a protective mechanism. They self-identified as a “casual nonbinary” person, meaning they could handle being misgendered, and although it did not cause them to quit attending their appointments, they acknowledged how detrimental this could be for others.

They described the experience of chemotherapy treatment room as “genderless,” with majority of patients looking uniform by being ill and bald, and staff referring to everyone as patients without reference to gender. Grappling with the experience was difficult, where on the one hand they were no longer being actively misgendered, but it was at the cost of feeling dehumanized as a cancer patient. This concept was reflected back on the interviewer—“Would you rather be misgendered or just like be medicalized to the point that you're just the patient?”.

Being in-Between

Taylor shared the difficulties of finding community in which they felt represented and understood. Identities that were integral to their experience included being queer and nonbinary, having breast cancer, and being part of the adolescent and young adult (AYA) age group, which is how they framed their experience in their introductory blogpost. They felt discordance with the breast cancer support groups due to the gendered nature. For example, receiving a double mastectomy was gender-affirming, whereas body hair loss felt dysphoric, which contrasted with the sentiments shared in the breast cancer support groups. They had also tried attending gender-affirming top-surgery support groups. Although their gender identity felt affirmed, the celebratory tone felt discordant with their cancer diagnosis, sharing that “because everyone in [the top-surgery support] group was doing it for gender-affirming reasons. And I think there was like a sense of excitement and affirmation there that I didn't really get to access in the same way.” (Interview)

This isolation was compounded by having shifting priorities, whereby at times they felt their gender identity was more important than their identity as a cancer patient and vice versa. Overall, no group seemed to meet their needs fully, stating in the interview “that [the] intersection of being a cancer patient, a gendered cancer patient. Being nonbinary, I felt like an island.”

Confining

Acts of reclamation and self-expression were vital to affirming their gender identity, and even shared in their blogposts getting a tattoo on their head after shaving their hair. Choices (eg, shaving head, getting top-surgery) that might have felt gender-affirming and liberating created dissonance because the choice was taken away, represented in comics (Figures 4 and 5).

Figure 4.

Representative comic for the theme “Confining”, reproduced with permission from Copyright Holder.

Figure 5.

Representative comic for the theme “Confining”, reproduced with permission from Copyright Holder.

This was especially salient in the discussion around top-surgery, and subsequently a hysterectomy, given these had been long-desired operations with large financial barriers that were only obtainable through a cancer diagnosis.

During chemotherapy, Taylor felt perceived as a “genderless blob,” which may be seen as stereotypically nonbinary and therefore affirming. However, in the context of cancer, the experience felt dehumanizing. Since these choices of gender expression were stripped away, Taylor felt acutely aware of and unsettled by the way they may be perceived by others. This created a feeling of self-consciousness, feeling hyper aware of the things they did not have control over (eg, bald head, flat chest) and often grappling over whether people saw them primarily as a cancer patient or as a nonbinary person.

I don't know how people see me, if they see the baldness and the flatness as a choice, or if they see it as a sickness, that really messes with my head because I don't have control over that anymore. (Interview)

Discussion

We attempted to gain an in-depth understanding of the experiences of a nonbinary person diagnosed with breast cancer through a qualitative case study, by analyzing multiple sources of data. Findings from the study highlight the ways in which a nonbinary person navigated their breast cancer experience and made sense of their diagnosis. This included conflicting feelings around receiving a double mastectomy, isolation due to multiple competing identities, and feeling burdened with the responsibility of representing their communities.

Insights from the study highlight some of the gaps in care pathways for gender-diverse people receiving breast cancer treatment. Notably, many findings from the current study are echoed in Cancer's Margins patient interviews with trans- and gender-nonconforming cancer patients. ⁷ Shared insights include the branding of breast cancer as a “women's cancer” and receiving healthcare with gendered branding (eg, women's clinics), lack of information on the intersection of gender-affirming care (eg, hormone therapy) and cancer treatment, and disconnect with gendered cancer peer support groups.

Several unique insights were found in the current study. First, there were feelings associated with being genderless imposed upon them by their cancer diagnosis, and not due to choice. This finding highlights the importance of creating a gender inclusive environment without being dehumanizing or impersonal. Secondly, Taylor shared their experience of attempting to find community through top-surgery peer support groups, which lacked intersectionality with their new identity as a cancer patient. Support groups should ensure members have meaningful shared experiences. Finally, Taylor shared how they felt the more specialized doctors provided the most inclusive care, speculating that this was due to lower patient turnover. Training on providing inclusive care for gender-diverse people should be available for all healthcare professionals and at each stage of cancer treatment, understanding that even small interactions can make a significant difference in perceived quality of care. Although there may be a general dissatisfaction among patients with our currently constrained healthcare system, specific issues for nonbinary individuals exist in addition to these concerns. This case study highlights the systemic barriers these patients face, causing them undue harm through marginalization and invalidation.

Given the trauma Taylor experienced in their care, we were interested in exploring theory behind trauma-informed care. A trauma-informed approach brings awareness to the ubiquity and impact of trauma, assuming anyone we interact with may be holding trauma. Multiple negative experiences throughout cancer treatment can culminate and add to the minority stress (ie, identity-specific stress due to discrimination, stigma, and prejudice) that nonbinary people experience. ¹⁸ Nonbinary people may experience unique stressors based on essentialist beliefs that gender is strictly binary. ¹⁹ These chronic stressors are intimately related to traumatic invalidation and the subsequent mental health sequelae among nonbinary people. ²⁰ As such, adopting a trauma-informed care framework is imperative to better serve gender-diverse populations. Principles of a trauma-informed approach have been defined by the Substance Abuse and Mental Health Services Administration (SAMHSA) and include 6 key principles: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and cultural, historical, and gender issues. ²¹

Using the lens of trauma-informed care and the findings from the current study, we can identify areas for improvement throughout breast cancer treatment. Therefore, we propose an approach with specific suggestions on how to improve the care for nonbinary people with breast cancer and which can also apply more widely in healthcare as shown in Table 2. Suggestions for tangible actions to strive for trauma-informed care for gender-diverse people were based on the findings from the themes and informed by other resources and research.^22–25 Given trauma can be created around one's gender identity, assuming one has experienced trauma related to their gender identity, even if they have not, will prevent inflicting trauma, and build a stronger therapeutic relationship between the patient and healthcare providers.

Table 2.

Principles of Trauma-Informed Care with Examples on Caring for Nonbinary Patients.

Principles	Approach	Examples
Safety	To recognize and build an awareness of how common trauma (including medical trauma) is especially among gender-diverse people, and to build care that makes patients feel physically and psychologically safe. To continue to educate all healthcare workers at all stages of cancer care how to create an inclusive environment and build a sense of allyship with patients.	Use inclusive, nonbinary language in forms, signage, and verbal communication. Eliminate language that makes assumptions about gender identity or sexual orientation (eg, spouse/partner instead of husband/wife). Provide intake forms that ask for pronouns, preferred names, and sex assigned at birth, and gender identity. Ensure this information is clearly documented in the patient's chart. Visible representation of LGBTQIA+ symbols (eg, pride flags, LGBTQIA+ breast cancer posters). Offering gender-neutral centers for screening of breast cancer opposed to women's health centers. Educate all healthcare workers and staff (eg, nurses, doctors, administrators, technicians) at all stages of cancer care how to create an inclusive environment for LGBTQIA+ individuals (eg, asking for pronouns, wearing pronouns in badges). Ensure healthcare workers are aware of a patient's pronouns before interacting with them.
Trustworthiness and transparency	To be transparent in actions and decisions surrounding the patient. To listen openly and acknowledge and rectify mistakes.	Correcting misgendering by briefly apologizing then using the correct pronoun and moving on. Centering the mistake in the conversation may prolong discomfort with being misgendered. Familiarize and practice using less commonly used pronouns (eg, they/them, ze/zir) and gender-neutral terms. If multiple pronouns are noted for a patient, typically, these pronouns can be used interchangeably and are listed in the order of preference. However, if there is any uncertainty, ask the patient their pronoun preferences. Familiarize with some of the commonly used terminology used in the LGBTQIA+ community, especially terms that may be relevant in the clinical context (eg, AFAB = assigned female at birth). Be specific in language for the clinical context when referring to reproductive and gendered body parts (eg, “people with breasts” instead of “women”).
Peer support	To encourage and provide opportunities for peer support, understanding the power of shared experiences	Connect patients (with permission) to each other for peer support. Become familiar with LGBTQIA+ local and national organizations that can provide resources and peer support to patients (eg, Queering Cancer in Canada).
Collaboration and mutuality	To allow patients to be actively involved in their care and encourage open communication for feedback to shape their treatment.	Staying up to date on research on gender-diverse people and cancer treatment to be informed when explaining treatment options to patients. Allow patients to share their story and express their desires and concerns around treatment, understanding negative past experiences in the medical setting can influence interactions.
Empowerment, voice, and choice	To allow nonbinary patients to take the lead and set the precedence for their care and treatment-related needs, understanding everyone has their own unique experiences.	Ask patients what their preferences are, without assumptions, for treatment, especially treatment that could impact their gender expression and identity (eg, hysterectomy, mastectomy). Do not assume that these procedures would provide gender euphoria or dysphoria. Ask patients how they would prefer to be draped during physical examinations (ie, whether they want their chest to be covered or not) and whether they have preferred terminology (eg, chest vs breast, genitals vs vagina/penis). Recognize that some patients may or may not experience gender dysphoria (or euphoria post mastectomy) with their chest. Depending on the patient's relationship with their own breast/chest, this can guide the tone of the conversation. For example, if a double mastectomy provides gender euphoria, providers can recognize that this is gender affirming while acknowledging the unfortunate circumstances that warranted surgery.
Cultural, historical, and gender issues	To offer culturally responsive services and resources. Understanding that people hold multiple identities that intersect with their experiences.	Not assuming all nonbinary people have the same experience or preferences. Recognize that gender identity (one's internal sense of gender) is separate from gender expression (how someone outwardly expresses their gender), and sexual orientation (who someone is attracted to), and these components can vastly differ between nonbinary people. Recognize gender roles and norms are socially and culturally influenced and thus can change overtime. Not assuming people are out about their gender identity to friends and family. Ask the patients how much information they would like to be shared with their friends and family that are involved in their care. Recognize gender diversity in different cultural contexts (eg, two-spirit people in indigenous communities).

Conclusion

A nonbinary individual with breast cancer experienced significant psychosocial stress from isolation, misgendering, and gender dysphoria magnified by the pink-washing of their breast cancer journey. The current study hopes to serve as a starting point and a call for increased attention to, and further research on, the care path for nonbinary individuals diagnosed with gendered cancers. Healthcare workers could start by using a trauma-informed care approach to better care for gender-diverse individuals.

Supplemental Material