Scoping review of experiences of sexual minority women treated for breast cancer

Abstract

Purpose

To summarize and critique research on the experiences and outcomes of sexual minority women (SMW) treated with surgery for breast cancer through systematic literature review.

Methods

A comprehensive literature search identified studies from the last 20 years addressing surgical experiences and outcomes of SMW breast cancer survivors. Authors performed a quality assessment and thematic content analysis to identify emergent themes.

Results

The search yielded 121 records; eight qualitative studies were included in the final critical appraisal. Quality scores for included studies ranged 6-8 out of 10. Experiences and outcomes of SMW breast cancer survivors were organized by major themes: 1) Individual, 2) Interpersonal, 3) Healthcare System, and 4) Sociocultural and Discursive.

Conclusions

SMW breast cancer survivors have unique experiences of treatment access, decision-making, and quality of life in survivorship. SMW breast cancer survivors’ personal values, preferences, and support network are critical considerations for researchers and clinicians.

Keywords:

• Breast neoplasms
• cancer survivorship
• decision making
• delivery of health care
• sexual and gender minorities

Problem identification

In 2023, approximately 297,790 US women will be diagnosed with invasive breast cancer.¹ Approximately 6.4% of U.S. women identify as sexual or gender minority (SGM; including gay, lesbian, bisexual, transgender, and other sexual and gender minority identities and experiences).² Though cancer incidence and prevalence is unknown for SGM people, extrapolation from the general population equates to over 15,000 SGM individuals diagnosed with invasive breast cancer in the U.S. in 2023.³ However, despite calls from national organizations for systematic sexual orientation and gender identity data collection,^4,5 this information is not routinely collected in health research or clinical health records, perpetuating invisibility of SGM people in research and clinical care.^5–7

Evidence is emerging that sexual minority women (SMW) face unique challenges throughout the cancer care continuum and do not receive care that adequately meets their needs.^8,9 Starting before diagnosis, disparities for SMW have been identified in breast cancer risk and screening. Lesbian and bisexual women have a higher prevalence of breast cancer risk factors including nulliparity, obesity, alcohol use, and smoking. SMW are also less likely to have health insurance coverage, a recent pelvic examination, or mammogram.^10–12 Studies show Black SMW have even higher delays in breast care than white SMW, reporting intersectional stigma (i.e. stigma for Black and sexual minority identities) and lower social support.^13,14 SGM people with breast cancer may have worse cancer-specific outcomes, including delayed diagnosis, faster cancer recurrence, increased likelihood of declining oncologist-recommended treatment modality, and age-adjusted risk for fatal breast cancer.^15,16 While quality of life and psychological adjustment appear similar in SGM breast cancer survivors and cisgender, heterosexual survivors,^17–20 there remain unmet support needs for SGM breast cancer survivors.^21,22

Treatment phase is another point for oncology clinicians to consider patients’ values, preferences, and lifestyle when discussing care. Treatment recommendations should follow national guidelines,²³ but many women have options requiring decision points, such as mastectomy vs. breast conserving surgery with radiation, or whether they wish to have reconstructive surgery.²⁴ There is evidence that in the general population of breast cancer patients, there is incongruence between patients and surgeons with regards to priorities and goals of breast reconstruction.²⁵ In SGM women specifically, there is evidence that assumptions and heteronormative, cisgender biases permeate the treatment discussion and recommendation process by clinicians, and by cancer surgeons specifically.^26,27 The potential disconnect between patients and oncology clinicians related to values, preferences, and lifestyle can lead to dissatisfaction with care (such as exclusion of social support and lack of provision of relevant health information) and poor clinical outcomes including treatment side effects (i.e. arm morbidity, systemic side effects) and sexual health.^28–30

SMW report systemic barriers to obtaining safe and affirming healthcare, including lack of culturally competent care, fear of discrimination, experiences of homophobia, and lack of health and support information specific to the needs of SMW.^8,31 These experiences lead many SMW to feel isolated and invisible during one of the most vulnerable times in their lives.⁸ The purpose of this review was to summarize and critically appraise contemporary studies reporting breast cancer surgery outcomes and experiences of SMW patients. While quantitative studies speak to the prevalence of different surgery options (breast-conserving surgery vs. mastectomy),³⁰ our focus was gaining a better understanding of SMW survivors’ clinical and quality of life outcomes in order to identify important targets for tailored intervention. We utilize the Sexual & Gender Minority Health Disparities Framework, an adaptation of the National Institute on Minority Health and Health Disparities (NIMHD) Minority Health and Health Disparities Research Framework,³² to examine the multi-level factors impacting the breast cancer surgical experiences and outcomes of SMW. The SGM Health Disparities Framework is an ecological model that highlights how individual, interpersonal, and community and societal factors can create SGM-specific health disparities.³²

Literature search

Inclusion criteria

Studies were included if: (1) participants had been diagnosed with breast cancer; (2) participants identified as members of the SGM community; (3) one or more of the following were reported: experiences, preferences, or needs related to breast cancer care or surgical treatment decision-making, as well as interactions with healthcare clinicians and support persons; (4) they used qualitative methodology; (5) were published in English; and (6) published in 2000 or later. The time frame was chosen to capture a wider breadth of studies, including those with more contemporary sociocultural contexts.

Search strategy

Selected databases included PubMed, Embase, CINAHL, PsycINFO, and LGBT Life with Full Text (EBSCO). Key search subjects included the following: (1) sexual and gender minority women or transgender men; (2) breast or chest cancer; (3) treatment, mastectomy, or reconstruction; (4) treatment experience or navigation or satisfaction (for specific search terms, see Supplemental Online Resource 1). Literature searches were initially conducted on July 14, 2021 and repeated/updated on February 22, 2023; all searches were limited to English and January 2000 to February 2023.

Study selection

Search results from each database were imported into Covidence® and duplicates were removed. The remaining articles were screened by title and abstract, then full-text articles were retrieved and reviewed against inclusion/exclusion criteria, all conducted by three reviewers (EA, ER, and JKS). Details of the systematic review plan were submitted to PROSPERO (CRD42021224205) on December 2, 2020.

Quality appraisal

All included studies were assessed for quality using Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research (Table 1).³³ Full quality assessment tools with authors’ scores can be found in Supplemental Online Resource 2. Using this tool, three reviewers (EA, ER, and JKS) independently appraised each study and then discussed and reconciled any discrepancies.

Table 1. Summary table describing studies included in the review.

Authors & Year	Sexual Minority Population	Gender Minority Population	Other Population	Aim	Findings	Limitations	Average JBI Score
Boehmer, Linde, & Freund, 2007	15 SMW (12 lesbian, 1 bisexual, 2 women who partner with women)	Not assessed	12 support persons (8 lesbian, 1 bisexual, 3 heterosexual)	To explore which issues SMW considered when making decisions on reconstructive surgery and to understand the influence and perspectives of these women’s most important support persons	1. Decisions for or against reconstruction are rooted in a value system and body image shaped by their sexual minority identity. 2. Women who chose reconstruction experienced difficulties and regrets, whereas women without reconstruction adjusted well after time. 3. Partners of SMW matched the level of satisfaction with reconstructive choice achieved by the women themselves.	Small convenience sample Cannot make inferences regarding prevalence of themes identified Recall bias due to retrospective design	8
Brown & McElroy, 2018	54 lesbian, bisexual or same-gender loving; 8 queer, questioning, or not listed	10 genderqueer or transgender	N/A	To better understand factors that affect sexual and gender minority (SGM) breast cancer patients embracing the choice to "go flat" or opt out of reconstruction after bilateral mastectomy	1. Flattoppers® were significantly more likely to have been diagnosed in the past five years, to identify as genderqueer, to have disclosed their sexual orientation or gender identity (SOGI) to providers, and to report participating in lesbian, gay, bisexual, or transgender cancer support groups, compared to other participants. 2. More flattoppers® believed that SOGI mattered in terms of getting the support they needed regarding their cancer; this difference was not statistically significant.	Limited generalizability Survivors self-selection bias Inadequate statistical power (small sample size) Limited sociodemographic variables collected	6
Bryson et al., 2018	6 lesbian, 46 queer, 9 bisexual; breast or gynecologic cancer patients	7 transgender, 3 gender non-conforming, 38 genderqueer	N/A	To examine how sexuality and gender are intersectionally constitutive of complex biopolitical mappings of cancer health knowledge that shape knowledge access and its mobilization in health and treatment decision-making	1. Transgender folks encounter and navigate a system of breast and gynecological cancer care practices and knowledge utterly unprepared to include them. 2. Trans cancer patients’ awareness of overlaps in cancer surgeries and gender affirming surgeries and of the lack of coordination of cancer and gender affirming care appears to be a problem of which care providers are woefully unaware.	Limitations not discussed	8
Greene et al., 2021	15 cisgender, SMW who had a breast cancer diagnosis or recent abnormal mammogram	N/A	N/A	To use constructs from self-determination theory (SDT) to explore the nature of health care provider interactions in breast cancer screening and care among Black SMW.	1. Themes aligned with the SDT constructs of relatedness and autonomy. 2. Some participants discussed feeling most understood by Black and/or female providers who shared at least 1 of their identities. Feeling understood through shared identity contributed to participants feeling seen and heard by their providers. 3. Participants who discussed negative experiences with providers believed that the provider made negative assumptions about them based on their race and/or sexual orientation.	Small sample size Well educated sample Limited range of socioeconomic status	8
Matthews et al., 2002	13 lesbian women	Not assessed	28 heterosexual women	To explore similarities and differences between lesbian and heterosexual survivors of breast cancer regarding cancer experiences, medical interactions related to cancer treatment, and quality of life (QOL)	1. Lesbians reported higher stress associated with diagnosis, lower satisfaction with care received from physicians, and a trend toward lower satisfaction with the availability of emotional support. 2. Lesbians and heterosexual women reported similar levels of overall QOL.	Small sample size Sample from a large urban setting Most of sample received care in large metro areas	7
Rubin & Tanenbaum, 2011	11 lesbian and 2 bisexual women	Not assessed	N/A	To examine the processes through which SMW negotiate concerns regarding appearance, sexuality, and identities (e.g. sexual, professional, and illness identities, among other intersecting identities and roles) in the context of breast reconstruction decisions	1. Although participants described sexual, gender, and political identities and orientations as influences on their decision making, for most participants, experiences with physicians who encouraged reconstruction and concerns about stigmatization of illness in romantic, professional, and social contexts were also central. 2. Reasons for/against reconstruction reflected themes identified in prior studies among heterosexual women.	Majority of participants had reconstruction Participants were younger than average BC patient Surgeons are more likely to discuss reconstruction with younger women Self-selection bias Recruited from support groups Not culturally diverse	8
Taylor & Bryson, 2016	Not assessed	10 transgender and gender nonconforming participants with breast or gynecologic cancer	N/A	To investigate experiences of cancer health and care, and access to knowledge for trans* and gender nonconforming people diagnosed with and treated for breast and/or gynecologic cancer	1. One’s knowledge of a felt sense of gender is closely interwoven with knowledge concerning cancer treatment practices. 2. Cisgender models concerning changes to the body that occur as a result of biomedical treatment for breast and/or gynecologic cancer are wholly inadequate in order to account for trans* and gender nonconforming peoples’ experiences of cancer treatments, and access to and mobilization of related knowledge.	Small sample size	8
Wandrey, Qualls, & Mosack, 2016	168 posts submitted by 53 users of Lesbians with Breast Cancer online discussion board	Not assessed	N/A	To explore lesbian breast cancer survivors’ attitudes toward breast reconstruction	1. Attitudes related to rejection of breast reconstruction were pervasive online support forum posts. 2. Five important themes related to breast reconstruction attitudes were revealed: (a) rejecting being defined by their body image, (b) privileging sensation over appearance, (c) believing that being breastless is protective, (d) perceiving their social context as supportive of nonreconstruction, and (e) feeling pressured by social norms to undergo reconstructive surgery	Discussions self-initiated No way of verifying if forum participants were lesbians with breast cancer Could not clarify meaning of posts Likely a more highly educated and computer literate group than general population	7

*All samples are breast cancer survivors unless otherwise noted; Samples are divided into sexual or gender minority to illustrate disproportionately larger number of sexual minority participants. The authors acknowledge that participant identities may fall anywhere along gender and sexual orientation spectrums.

Thematic analysis

A paired review group (EA, ER, CL; two authors per manuscript) independently identified themes and sub-themes from included manuscripts. Subsequent themes were inductively developed, reviewed by the group, and refined. Authors reviewed the refined themes, discussed thematic relevance and organization, and reached consensus on primary themes, sub-themes and cross-cutting concepts. Previously published methodology for qualitative data analysis guided this approach.³⁴

Data evaluation/synthesis

The literature search yielded 121 records, and an additional 24 were identified through manuscript reference list review (Figure 1). After removal of duplicates, 133 records were screened for eligibility. Eight studies (6%) reporting breast cancer surgery outcomes and experiences of SMW patients met our eligibility criteria and were included in the systematic review (Table 1). Quality assessment scores for included studies ranged 6-8 (possible range 0-10).

Figure 1. PRISMA diagram of literature search and study selection.

All eight manuscripts reported results of qualitative studies performed in the U.S. and Canada, with data collected through focus groups, interviews, and online support group posts. Study samples included lesbians, transgender, gender non-conforming, bisexual women, women who partner with women, and sexual and gender diverse individuals who may have used multiple terms to describe their sexual orientation and gender identity (Table 1). Though our literature search included both sexual and gender minority identifiers, five studies had exclusively lesbian or cisgender sexual minority participants, two had a mix of sexual and gender minority participants and one dealt exclusively with gender minority participants. When referring to included studies throughout the systematic review, specific study samples are described in a manner consistent with the original cited source. Additional demographic information for the samples is presented in Table 2.

Table 2. SGM survivor characteristics of reviewed papers within the scoping review.

Authors & Year	Location	Race n (%)	Ethnicity n (%)	Age	Educational Status n (%)	Employment Status n (%)	Health Insurance n (%)
Boehmer, Linde, & Freund, 2007	Bosten and Bedford, Massachusetts, US	African American 1 (0.7) White 14 (93.3)	Hispanic 0 (0)	50.7 years (no reconstruction) 47.3 years (reconstruction) (mean)	High School 0 (0) College 9 (60) Graduate School 6 (40)	12 (80)	14 (93.3)
Brown & McElroy, 2018	Social media/online recruitment	White 62 (91)	NR	35 and younger: 8 (11.7) 35 to 44: 10 (14.7) 45 to 54: 30 (44.1) 55 to 64: 7 (10.3) 65 and older: 5 (7.4)	NR	NR	NR
Bryson et al., 2018	San Francisco Bay Area and the Canadian provinces of British Columbia, Manitoba, Ontario, Quebec, and Nova Scotia	Asian 6 (7.4) Black 3 (3.7) Indigenous 6 (7.4) Mixed race 5 (6.2) Caucasian 58 (71.6)	Hispanic 3 (3.7)	33 to 46: 19 (23.5) 47 to 56: 34 (42) 57 to 66: 21 (25.9) 67 to 75: 7 (8.6)	NR	NR	NR
Greene et al., 2021	Social media, grassroots organizations, Black churches, and referrals from participants/national recruitment	Black or African American 15 (100)	NR	50.2 years (mean)	High School 3 (20) Some College 4 (26.7) College/Advanced Degree 8 (53.3)	13 (86.7)	NR
Matthews et al., 2002	Chicago, Illinois, US	African American 1 (8) European American 11 (84) Other 1 (8)	NR	51 years (mean)	High school 0 (0) Some college or college degree 8 (61) Advanced degree 5 (39)	9 (69)	11 (85)
Rubin & Tanenbaum, 2011	New York City, New York, US	White 12 (92.3)	NR	44.5 years (median)	Some College 5 (38.5) Graduate or Professional Degree 8 (61.5)	NR	13 (100)
Taylor & Bryson, 2016	San Francisco Bay Area and the Canadian provinces of British Columbia, Manitoba, Ontario, Quebec, and Nova Scotia	Caucasian 7 (70) Asian 1 (10) Native American/Filipino 1 (10) Jewish 1 (10)* French Canadian 1 (10)*	Latina 1 (10)	53.4 years	NR	NR	NR
Wandrey, Qualls, & Mosack, 2016	Online “Lesbians with Cancer” discussion board of breastcancer.org website	NR	NR	NR	NR	NR	NR

NR Not Reported; *While not standard race or ethnicity terms, these terms are how the authors (and presumably participants) described themselves.

Experiences and outcomes of SMW breast cancer survivors were organized by major themes based on the Sexual & Gender Minority Health Disparities Framework³² to illustrate the complex and layered experience of SMW breast survivors. These were 1) Individual, 2) Interpersonal, 3) Healthcare System (Community), and 4) Sociocultural and Discursive (Societal). Subthemes were explored for each major theme (Table 3).

Table 3. Major themes and subthemes for SMW breast cancer survivors’ experiences.

Individual: Effects of treatment on the body and identity, and vice versa Appearance and function Self-image, identity, and gender
Interpersonal: Partnerships and support networks, support for decisions, and coping Partners and dating Social support
Healthcare System: Healthcare access, quality, culturally responsive care, and patient education Clinician level Institutional level
Sociocultural and Discursive: Influence of narratives and cultural lenses Politics of gender Culture of breast cancer survivors

Individual

Though study participants describe a range of experiences, values, and opinions, there were common considerations for how cancer diagnosis and treatment affect their body appearance and function as well as self-image, identity, and gender.

Appearance and function

SMW (lesbian, bisexual, and women who partner with women) who chose reconstruction after surgery reported that they considered symmetry, avoiding uncomfortable prostheses, feeling ‘whole’, and looking ‘normal’.³⁵ They suggested their choice to appear to have a ‘normal’ looking feminine chest would help with avoiding depression after cancer surgery. Similarly, SMW survivors explained how a reconstructed feminine chest appearance can be ‘passing’ as normal and healthy, helping them to ‘pass’ as not ill, not a cancer patient, and cover up physical effects of cancer.

SMW considered how others would view their body form after cancer treatment to varying extents. Participants described pressures from cisgender societal norms to have reconstructed breasts.^35–37 These pressures also came specifically from their surgeons, who often failed to present any options other than reconstruction after mastectomy, framing reconstruction as the natural next step after mastectomy.³⁷ Some sexual minority patients said they were concerned about being mistaken for transgender or transitioning, which was not how they identified and also increased their risk of experiencing transphobia.^35,36,38

Sexual minority breast cancer patients often had a strong focus on body health and physical functioning of the chest, for both strength and intimacy. Many SMW believed that body strength and physical function were more important than having breasts,³⁵ and they did not want breast reconstruction to get in the way of their activities,³⁶ or to worry about implants, or additional surgeries or complications.³⁷

In a study of SMW’s breast surgery decision-making, those who did not have reconstruction generally had no regrets and still felt desirable, attractive, and “freed”.³⁵ Those who chose reconstruction more often talked about discomfort or pain, numbness, limited range of motion, and scar tissue. Women who chose reconstruction had mixed opinions with regards to their satisfaction with the outcome, such that some expressed doubts and regrets about their decision, while others were happy with the cosmetic outcome.³⁵

One common experience of those with reconstruction was the perception that they were not well-prepared regarding potential for complications, limited esthetic results, and physical limitations after reconstruction.^35,39 Many SMW prioritized sensation over appearance and considered loss of breast and nipple sensitivity when deciding on treatment options.^35,36 For some survivors, loss of breast/nipple sensation from mastectomy along with other cancer treatment effects, such as hair loss, diminished libido, and vulvovaginal dryness, combined to negatively impact their sexual response and satisfaction.⁴⁰ This extended to concerns about their partners’ sexual arousability in response to their lack of breasts.

Self-image, identity, and gender

Many SMW patients in the studies reviewed suggested that they felt more prepared to reject the desirable feminine form construct, as they had already refused to accept prevailing hegemonic views of heteronormative and cisgender womanhood.³⁷ Lesbian patients suggested that not being defined by their breasts was aligned with identifying as a lesbian.^35,36,39 Others agreed that being part of a queer community may have facilitated their ability to challenge mainstream beauty ideals, ‘‘play’’ with gender (e.g. deciding to wear prostheses or not), and separate having or not having breasts from one’s personal gender identity.³⁷

Narratives from studies included in this systematic review suggest gender influenced treatment choices, including the choice to reconstruct after breast surgery. Patients reported some intersection of personal feelings about breast surgery with or without reconstruction and gender-affirming surgery (top surgery).⁴¹ Many SMW patients who chose to forgo reconstruction, particularly those who identified as genderqueer, felt their new flat chest was affirming to their gender fluidity and flexibility to ‘wear boobs’ or not.^40,41

Interpersonal

Relationships with partners, family (including chosen family), and larger social networks influence personal experiences of the body, gender identity, and how SMW individuals navigate treatment decision making and adjust to treatment outcomes.

Partners and dating

Studies included in this systematic review suggested partners have an influence on treatment decision-making. In a study of SMW and their support people, Boehmer et al. found differences in congruence of values and shared decision-making for those who chose reconstruction compared to those who chose esthetic flat closure.³⁵ For SMW who chose reconstruction, partners were often more passive in the decision-making process and appeared to have more doubts after reconstruction than partners of SMW who opted to forgo reconstruction. Partners of SMW who had reconstruction recognized when the survivor had regrets due to breast mound changes in appearance, feel (contour, weight, density), and sensation. SMW who chose esthetic flat closure more often had partners who echoed their satisfaction and affirmed their attractiveness regardless of breast status. For SMW without a partner, some opted for reconstruction with the thought of how future partners might view them in mind. Alternatively, other SMW without partners reported that going flat felt protective from ‘the objectifying male gaze’, and served to screen out potential partners who value breasts and feminine appearance too highly.³⁵

Social support

When reporting social support related to breast cancer experiences, some studies report social isolation and fragile care networks related to stigma and biases faced by those in the SMW community.^38,41 Many individuals reported experiencing barriers to accessing affirming support, including acquiring cancer-related knowledge and coping resources. SMW patients often turned to the SMW community to find support that is affirming to their sexual orientation. Some participants felt the SMW social context was more supportive of breastlessness and of all body types (i.e. size, shapes, and gender expressions).³⁶ At the same time, some reported interacting with SMW individuals who were less understanding of a desire to reconstruct, assuming that because they were a member of the SMW community that they would not want breast mounds/reconstruction.³⁷

SMW breast cancer patients report challenges with finding relevant breast cancer specific knowledge and support through community and healthcare connections. Breast cancer support groups of cisgender and heterosexual women were not a good fit for several SMW patients.⁴⁰ Many said their needs went unmet and they often reported being uncomfortable ‘coming out’.^37,39 Many study participants suggested their diagnosis and treatment experiences were very different and perceived it as irrelevant to hear about others’ experiences with husbands and children, and an emphasis on being attractive to (cisgender and heterosexual) men. They felt there was a strong emphasis on appearance, and much less on physical limitations and functioning, which were more distressing to them.⁴⁰ Patients also reported a lack of culturally relevant cancer information and resources online, especially for transgender and gender non-conforming patients.⁴¹

Healthcare system

SMW in the included studies reported biased experiences within the healthcare system at the surgeon and institutional level. These experiences ranged from microaggressions to overt bias, to blatant discrimination.

Surgeon level

Study participants generally wanted to play an active role in their own care and decision-making, but some felt discouraged by their surgeon’s cisgender and heteronormative presentation of surgical options.^14,37 SMW breast cancer patients reported feeling disempowered after experiences with surgeons who presented breast reconstruction as the natural progression in treatment.^36–38 Study participants felt they needed to justify why they were opting out of surgery, but reasons for opting in were viewed as self-evident.³⁷ Some reported having to fight to have their surgeon accept their esthetic flat closure decision, with some surgeons enlisting help of family members/partners and mental health professionals to convince the patient to have reconstruction.³⁸ Several SMW patients were so overwhelmed by the process, they chose to go along with the surgeon’s recommendations, regardless of a hesitancy to reconstruct.^35,39 Both outright discrimination and surgeon discomfort with providing culturally competent care to SGM survivors led many to experience emotional distress and question their safety and the trust they placed in their surgeons to provide quality cancer care.^14,38,41

Conversely, some SMW patients were satisfied with their care because the cancer surgery was successful in removing their cancer, and they had positive healthcare clinician interactions. This was exemplified in a focus group study of lesbian and heterosexual women’s experiences by Matthews et al.³⁹ Like their heterosexual counterparts, SMW patients valued shared decision-making, respect, attention, and time provided by the oncology physicians, and were dissatisfied with those who were rushed or condescending. In a study of Black SMW, participants described positive interactions with a variety of oncology and primary care clinicians with whom they shared at least one characteristic (e.g. race, ethnicity, sexual orientation).¹⁴ They felt like their clinicians had an understanding of their needs and were accepting of their intersectional identities.

A common theme across studies was the experience of cisgender and heteronormative assumptions built into cancer treatment plans and anticipated treatment outcomes. Participants felt that surgeons and other oncology clinicians needed training on meeting the needs of SMW patients and that their care was disorienting and uncoordinated .⁴⁰ Gender-affirming care was rarely considered by oncology clinicians, despite potential conflict of these treatments (e.g. hormone therapy, mastectomy scar location, or chest reconstruction options). Lastly, the two specialties, oncology and gender-affirming care, were ‘in silos’ with no coordination or sharing of knowledge, which made decision-making difficult for transgender patients.⁴¹

Institutional level

Institutional-level subthemes included accessing care that feels safe and inclusive, treatment goals standardized for cisgender and heterosexual women, and poor coordination of care and services. One key aspect of access to affirming care and the safety of SMW breast cancer patients is whether or not they disclose their sexual orientation to healthcare workers. SMW breast cancer patients reported continually assessing whether it was safe to ‘come out,’ and how being ‘out’ might affect their care.³⁸ Participants reported needing to come ‘out’ repeatedly to many members of the healthcare team as they progressed through their care. Participants who were not ‘out’ reported feeling like they were betraying themselves and their partner and reported feeling invisible or erased from the community of survivors.

Participants described a process of discernment regarding whether they felt safe, respected, and affirmed with individual clinicians and within healthcare environments. In some cases, participants reported obvious displays of homophobia and transphobia that were compounded by racism in SGM people of color.^14,38 Some altered their appearance or behavior, or chose not to bring their partner to appointments to avoid discrimination.⁴¹ Others simply felt like a number more than a person in a crowded waiting room or overbooked clinic schedule.¹⁴ If clinicians and care environments were not able to support participants’ autonomy, self-care competence, and human relatedness, survivors often felt alienation for themselves and their partners during a very vulnerable time.¹⁴

Sociocultural and Discursive

Sociocultural and discursive subthemes included politics of gender and breast cancer subculture.

Politics of gender

Participants report experiencing ‘gender policing’, with others in general society imposing their opinions of what SMW patients’ gender expression should be. Several SMW patients felt deciding to forgo reconstructed breasts was an empowering decision. Some felt comfortable expressing this as a socio-political decision, while others felt marked as oppositional or trying to make a political statement, when they were making a very personal decision.³⁷ Participants described feeling caught in a Catch-22: if they opted for no reconstruction they were seen by general society as a desexualized woman, but if they chose reconstruction they were seen as buying into women’s objectification.³⁷ Patients said that living up to the image of ‘breastless warrior’, like survivors seen posing topless proudly without breasts in media, is not as easy as pictures look and can make some feel inadequate.³⁷

Culture of breast cancer survivors

Sociopolitical influences exist within the breast cancer community, and may be felt by both SMW and cisgender, heterosexual women. SMW patients commented on the ‘pinkwashing’ of breast cancer culture, covering clinical, commercial, and media products with the color symbolizing femininity, and often sponsored by fashion and cosmetic industries.^37,40 Some participants perceived that breast cancer is portrayed as a cosmetic crisis, rather than a health crisis, which one patient found “a convenient way to displace sheer terror”.³⁷ A focus on cosmetics and fashion can be distracting from important underlying problems, like social and employment discrimination based on a cancer diagnosis. For example, one participant related that it was more difficult to ‘come out’ to a prospective employer about a cancer status than to ‘come out’ about their sexual orientation.³⁷ Many SMW patients felt they needed to hide their cancer diagnosis from employers for fear of discrimination, including lost career opportunities.

Feelings of exclusion created by pink-washing the breast cancer experience was especially poignant for transgender and gender non-conforming patients.⁴¹ SMW with breast cancer often still identify under the umbrella of ‘women’s cancers’, however, transgender and gender non-conforming patients may not identify as women and are again rendered invisible in cancer programs intended for ‘women’s health’.

Conclusions

This systematic review summarized and critically appraised contemporary studies of breast cancer surgery outcomes and experiences of SMW survivors. While the general needs and outcomes of SMW are similar to heterosexual women, SMW experience them through a cultural lens informed by their lived experiences.³¹ Our findings largely reflect what is seen in contemporary literature describing oncology healthcare experiences of SGM individuals.^27,42 This study has several key themes and subthemes reflecting multi-level impacts of patients’ outcomes and perceptions, and can inform clinical, research, and policy approaches to improving health equity.

At each ecological level, themes presented are drivers of decision-making and may be considered by oncology clinicians in a culturally responsive, shared medical decision-making model.^38,41,43 On the individual level, clinical decisions were based on a wide variety of factors, often balancing external pressures with being true to oneself. Important clinical outcomes affect both heterosexual and SMW, including breast and nipple function, vaginal health and sexual function, body image changes, psychological health (e.g. coping and resilience), and overall self-rated health.^11,28,44 The impact of these outcomes post-treatment may be different for many SMW, and therefore a more culturally sensitive and tailored approach is warranted.²⁸ Clinicians may reassess their approach with some periodicity as individual’s sexuality and gender identification may be fluid over time and their needs may change.^45,46 Most study participants included in this systematic review are described as cisgender SMW (Table 1), and thus it is imperative to further research gender diverse breast cancer survivor clinical needs, values, and preferences.

On an interpersonal level, clinicians would do well to understand the makeup and involvement of SMW breast cancer survivors’ support networks.^21,47 Social support networks often provide unpaid practical, emotional, and decision-making support to survivors.^48,49 There is clear evidence that social support leads to improved outcomes in cancer survivors,⁵⁰ and this is especially relevant for SGM people who are at higher risk for social vulnerability factors.⁵¹ SMW breast cancer survivors may experience distress in clinical settings through discrimination, discomfort disclosing sexual orientation or relationship with their support person, and lack of culturally appropriate support services.^14,21,52 Additional research is needed to explore the social support needs of SGM breast cancer survivors, and how addressing those needs improves clinical outcomes.

In the clinical setting, open communication with oncology clinicians, including breast cancer and reconstructive surgeons, and informed decision-making were challenges for many SMW breast cancer survivors. Many clinicians, particularly breast surgeons, think of breast reconstruction as a biomedical inevitability and patient norm and have not considered gender and sexual identity as integral to the decision-making process.^{36–38,40,41} Current breast cancer treatment decision support tools were developed based on (presumably) cisgender and heterosexual patients’ opinions and preferences.^25,53 Future studies should confirm whether these tools are valid and reliable in SMW patients and adapt them appropriately.

Healthcare systems could make meaningful changes to the care delivery environment to make clinical spaces more welcoming and affirming to SGM folks.^54,55 Distrust in the healthcare system has been linked to poor breast cancer outcomes, including use of breast cancer screening, genetic testing and counseling, and adjuvant treatment.^56–59 This has been shown to be critical for SMW and particularly for Black SMW.⁶⁰ It is vital that clinicians ask about sexual orientation and gender identity and document it appropriately, and then be mindful of how individual’s identity may impact their decision-making, support system, and cancer care. While others have pointed to lack of clinician knowledge or relevant support resources when describing SMW unmet survivorship needs,^61–63 this review shows that many surgeons lack cultural sensitivity to SGM patients preferences and values in the context of reconstruction decision making.

Limitations

The literature reviewed has several limitations that should be considered when drawing conclusions and informing future research and practice. Most study participants were white, well-educated, and self-identified as lesbian, thus limiting generalizability. A major deficit in the current knowledge of SGM breast/chest cancer experiences and outcomes is the lack of diversity in gender, race, ethnicity, socioeconomic status, and other intersectional social determinants of health that amplify the cancer disparities of SMW like many of those included in these studies. Diverse SGM survivors are less likely to participate in research due to medical and research mistrust very much based in historical atrocities, and it is the responsibility of clinicians and researchers to work diligently to earn the trust of vulnerable communities.^64–67

Included studies had small sample sizes with minimal geographic/rural distribution, with participants from Boston, New York City, Chicago, the San Francisco Bay Area, Canada (specifically urban, suburban, and rural locations in the Canadian provinces of British Columbia, Manitoba, Ontario, Quebec, and Nova Scotia), and those recruited though social media/national recruitment. Only one study included support people to describe experiences and outcomes of SMW breast cancer patients,³⁵ and none included the clinician or surgeon perspective.

Implications for psychosocial oncology

There are several implications for research and practice based on results of this systematic review. At each level of the SGM Health Disparities Framework, clinicians and researchers have an opportunity to intervene to improve the quality, safety, and relevance of breast cancer care for SMW.

• Results indicated that SMW breast cancer patients feel largely invisible and misunderstood as they navigate a cisgender and heteronormative clinical, social support, and survivorship system.

• The studies suggest oncology clinicians could improve shared treatment decision-making by reviewing individual preferences, values, and family/social support networks.

• More research is warranted to describe the breast cancer experiences of SGM people with particular attention to diversity of gender, relationship status, race, ethnicity, socioeconomic status, and other factors of social vulnerability.

This systematic review found that SMW breast cancer patients have unique experiences of healthcare access, decision-making, and quality of life in survivorship. Thus, researchers and clinicians must consider SMW breast cancer patients’ personal values and preferences for treatment, as well as their support network. Culturally responsive healthcare clinician interactions are critical for reducing health disparities in cancer care access and quality of life outcomes for this underserved and understudied population.

Author contributions

All authors contributed to the review conception and design. Literature search and Covidence® management were performed by Emily Ridgway. Title, abstract, and full text screening and manuscript quality assessments were performed by Elizabeth Arthur, Emily Ridgway, and Jessica Krok Schoen. Thematic analysis was performed by Elizabeth Arthur, Emily Ridgway, and Clara Lee. The first draft of the manuscript was written by Elizabeth Arthur and Emily Ridgway, and all authors made substantive comments and revisions to subsequent versions of the manuscript. All authors read and approved the final manuscript.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.