Seven women who self-identify as lesbians participated in the research, four of whom were diagnosed with breast cancer and three were intimate partners, regardless of the time of union. Participants were located based on contacts in social networks and support groups for breast cancer. Two potential participants declined the invitation: Nina’s wife and another woman who stopped responding to the researcher’s messages.

The participants were selected based on the following criteria: self-identify as lesbian; age of 18 or older; having been diagnosed with breast cancer (in the case of patients) or being their intimate partner; being in clinical conditions to grant the interview. The exclusion criterion was women who presented marked difficulties in understanding and communicating.

The number of participants was determined by the criterion of theoretical saturation (Fontanella et al., 2011). According to Rego et al. (2019), the number of participants to be included is influenced by the specificity of the sample. If the samples are very specific, it is likely that the informants have quite homogeneous characteristics, which may lead to smaller samples. Therefore, very high levels of specificity may favor the use of small samples, as occurred in this research.

Sociodemographic Data Form: This instrument addressed general sociodemographic and clinical data.

Critério de Classificação Econômica Brasil (Brazilian Economic Classification Criterion): This instrument aims to characterize the participants in terms of purchasing power and their position in the social hierarchy (Associação Brasileira de Empresas de Pesquisa, 2016).

Semi-structured Interview Script: For data construction, episodic narrative interviews were conducted, which focus on understanding the research participants’ accounts of facts, episodes and events, which proved to be relevant to the understanding of the phenomenon studied (Flick, 2009). The interview script was developed from a review of scientific articles on the theme (C. Souza & Santos, 2021).

To constitute the research corpus, participants were located based on contacts in social networks and support groups for breast cancer; then, recruitment was based on indications from other women who were supposedly eligible, obtained from the participants (“snowball” method). Other search strategies and access to potential participants (contact with LGBTQIA+ groups, as well as with hospitals) were also used so that the sample could cover a diversity of people and not remain restricted to the researcher’s social group.

Interviews were conducted with each woman, separately, except for a couple, Débora and Helena, who attended together in both interviews. All interviews were conducted in Portuguese, from November 2017 to May 2018 in a face-to-face situation and recorded with the participants’ consent. Data collection was carried out in a preserved environment. Preliminarily, the researcher came into personal contact with the eligible women, explaining the research objectives and requesting their collaboration. If the patient agreed, the researcher got in contact and scheduled a meeting at the participant’s preferred location. On that occasion, the interview with the partner was scheduled.

The interviews lasted between 77 and 331 minutes, later transcribed, and analyzed in the perspective of the inductive thematic analysis (Braun & Clarke, 2006). This technique proves particularly useful for organizing dense descriptions of a topic of interest through the creation of themes. The themes constructed were emergent in nature (“bottom-up”); that is, they were not defined by the researchers as a priori theoretical categories; rather, they emerged inductively according to the research objective. The interviews were read thoroughly and coded by two experienced members of the research team, taking general aspects relevant to answering the research objective as a guide. The six recommended methodological steps were followed: 1) Familiarization with the data; 2) Generating initial codes; 3) Searching for themes; 4) Revising the themes; 5) Defining and naming the themes; 6) Producing the report.

The theoretical framework for analysis comprised recent research on breast cancer and lesbian experience, extracted from systematic review (C. Souza & Santos, 2021), involving issues of female sexuality and gender relations (Rich, 1980; Scott, 1986).

The study was approved by the Research Ethics Committee of the Faculty of Philosophy, Sciences and Letters at Ribeirão Preto from the University of São Paulo (FFCLRP-USP), CAAE: 65391517.4.0000.5407, following the ethical procedures regarding the volunteers and the institution, according to Resolution No. 466/12 (Conselho Nacional de Saúde, 2012). Participation in the research was voluntary, and the participants formalized it by signing the informed consent form. All names used in this work are fictitious and were chosen by the participants themselves.

The thematic analysis allowed the construction of the following thematic axes: hair loss, living with pain, breast removal, breast reconstruction and support from intimate partners.

Regarding the consequences of treatment, the first significant loss was hair loss due to antineoplastic chemotherapy. Débora explained that hair loss was not a problem for her: “(…) I felt very beautiful bald. I took several photos, yeah... I went out, even with my bald head (…). I thought I became more feminine (…)”. On the contrary, Frida reported that she suffered with hair loss but realized that it was not everything after the initial impact.

Coping with hair loss by lesbian and heterosexual women who have had breast cancer varies according to each person’s situation and personality. Many women claim that hair loss did not affect their femininity. The most important for them is that they were alive. On the other hand, hair is meant as one of the greatest symbols of femininity in Western culture, and its loss can be felt as a very traumatic experience, which impacts the self-image of women with breast cancer (Dua et al., 2017; Trusson & Pilnick, 2017; Wheldon et al., 2019).

The two participants gave different directions for hair loss. Débora was perhaps not so focused on expectations regarding the female appearance. Therefore, she could see beauty in a look that deviates from the standards imposed on women, stating that she did not think she was less feminine or less beautiful because she lost her hair. Frida, perhaps having internalized more of these arbitrary standards of beauty and femininity, initially resorted to the prosthesis to try to keep the hair.

Nina and Yele commented more on the reaction that other people had when they saw them without hair. The first reported that she got married when she was bald, receiving much support at that moment: “And I was in a turban [in her wedding], because I was completely, completely bald (…). And then, the people, everyone... a lot, cheering a lot for us (…)”. The second explained that hair loss was not a hindrance so that she could relate to someone else: “(…) I met my ex-girlfriend (…) and she fell in love with me. I was bald, feeling sick (…) and she wanted to be with me (…)”.

It was seen in the literature that social support, whether from friends, family members, or even from health services, helps women who have had breast cancer to deal with hair loss (Dua et al., 2017; Trusson & Pilnick, 2017). Such support seems to have been perceived by Nina and Yele. No similar studies were found involving women of sexual minorities.

To undergo cancer treatment is to learn to “live with pain”. The four participants affected by cancer reported having experienced diffuse pain throughout the body during the long treatment period. Débora mentioned intense pain and Yele said that she felt little pain. Nina and Frida commented that pain was one of the side effects of hormone therapy.

A study conducted in the United States indicated that women who had breast cancer feel pain above the national average for an American adult (Schreier et al., 2019). All participants who had breast cancer reported that they experienced pain at different levels and locations, during treatment and after. Again, no similar studies were found involving women of sexual minorities.

Although women are often told that the side effects of medication tend to decrease over time, the literature shows that the intensity of side effects self-reported by patients increases significantly over time (Moon et al., 2019). Boehmer et al. (2013) found in their research with lesbian and heterosexual women who had breast cancer that the former had greater physical disabilities after surgery, radiation treatment, and hormone therapy. Nina and Frida commented on the recurrence of side effects of hormone therapy, especially regarding the pain, and expressed the desire to discontinue the medication.

Regarding “removing the breasts”, Débora, Nina, and Yele reported feelings of sadness when they learned that they would be without their breasts. Frida, on the other hand, chose not to have a mastectomy, even though it was a medical recommendation:

Throughout her life and during her socialization process, women are oriented to realize that the female body is different from the male. The breasts are one of the markers that most show this difference in the eyes of the other. Thus, when a chronic-degenerative disease such as cancer reaches this organ-emblem of femininity, the sick woman, regardless of sexual orientation, can mean mastectomy as an aggressive and mutilating process, in addition to representing a direct attack on her self-esteem and sense of body aesthetics (Inocenti et al., 2016; Rodrigues et al., 2022; C. Souza & Santos, 2021; Wheldon et al., 2019).

It can be said that Débora, Nina, Yele, and Frida perceived mastectomy, whose objective is the removal of the tumor mass, as an aggressive and mutilating process, which impacted their self-esteem and body identity (Inocenti et al., 2016; Rodrigues et al., 2022), so much so that Frida chose to have a more conservative surgery, even knowing that this means a resection of the tumor with a lower safety margin, which increases the risk of recurrence. Besides, Frida and Nina were also categorical in maintaining control over their bodies, even though society sees women’s bodies as submissive (Cavaler & Beiras, 2022). The first decided not to remove the breasts and the second chose for non-breast reconstruction instead of letting the professional decide what would happen to their bodies (Inocenti et al., 2016).

Study with sexual minority women who chose not to undergo breast reconstruction found that most of those who refused gender labels before treatment felt more comfortable in their bodies after mastectomy. Other participants found that this choice of treatment gave them a new sense of clarity or comfort in relation to their gender identity (Brown & McElroy, 2018; Wheldon et al., 2019). Yele reported that when she was younger, she had the desire to remove her breasts, but when breast cancer brought the possibility of fulfilling that desire, Yele, to her own surprise, did not want to stay without the breasts.

Regarding “breast reconstruction”, Débora reported that she is not satisfied with her reconstruction: “(…) In the future, I intend to look for a surgeon to make it, I don’t know, a little more... pleasant. I don’t think it looks very natural (…)”. Yele, on the other hand, appeared to be satisfied with breast reconstruction nowadays: “So, in the sequence, when he [doctor] put [the prosthesis] there is that situation of indignation ‘why me?’. But today I deal with it very well (…)”.

Reconstruction surgery can restore a woman’s self-esteem and the feeling of being whole again, helping to rebuild her self-image after mastectomy, in addition to helping to overcome the consequences of the disease (Cammarota et al., 2019; Inocenti et al., 2016; Volkmer et al., 2019). However, the way a woman sees her body before and after the changes caused by cancer can influence how she sees herself after reconstruction. Thus, this surgery can also be seen as another mutilation that leaves marks on women and maintains the stigma they previously felt (Inocenti et al., 2016; Volkmer et al., 2019). Currently, breast reconstruction seems to be viewed positively by Yele, while Débora seems to see it as a surgery that has left new scars.

Furthermore, as many women feel pressured by arbitrary beauty ideals, it would not be uncommon for women who removed their breasts and put on prostheses to experience difficulties in liking their new breasts if they did not correspond to the ideal female body (Hirschle et al., 2018; C. Souza & Santos, 2021). These ideals may have pressured Débora and Yele to put on prostheses and at the same time influenced in the non-satisfaction that Débora felt with the reconstruction, since the reconstructed breast often does not correspond to the beauty ideal of the society (Hirschle et al., 2018; Inocenti et al., 2016).

Nina, on the other hand, chose not to do the reconstruction because she would not like to undergo another painful surgery:

Nina’s speech reveals the belief that people have in a “female domesticity”, where the heteronormative society and focused on the man acts on the body of the women, making them submissive, disciplined, and docile (Cavaler & Beiras, 2022). It is as if men and institutions (in this case, health) could decide whether reconstructive surgery would take place or not, regardless of the woman’s will. This results in mechanisms for controlling and self-control of female sexuality, including those in which men have no participation (Rich, 1980; C. Souza & Santos, 2021).

It seems that Nina found heteronormative biases not only in health services but also in her social group, which fails to see non-reconstruction as a possibility for treatment. Nina’s friends believed that not being married to a man was what made the participant decide for the non-reconstruction, disregarding the fact that Nina could make this decision on her own. However, these statements did not prevent the participant from making the decision she thought was most appropriate.

Studies have shown that lesbian women perform mastectomy without having reconstructive surgery (Brown & McElroy, 2018; Wheldon et al., 2019). Five themes were identified related to breast reconstruction attitudes of lesbian women: rejecting being defined by their body image, privileging the feeling over their appearance, believing that being without the breast attracts the attention of others less, perceiving their social context as support to non-reconstruction and feeling pressured by social norms to undergo reconstructive surgery (Wheldon et al., 2019).

For Nina maintaining the sensitivity of the breast region is more important than the question of appearance (Volkmer et al., 2019). The participant mentioned that her wife would support her in any decision she made regarding the reconstruction, but her friends rejected the idea of not having reconstructive surgery. In Débora and Yele’s cases, mentioned above, there is a possibility that they feel more pressured by social norms and end up undergoing surgery.

All four participants commented on how their “partners offered them support” during and after cancer treatment. Débora said that Helena often praised her: “(…) I have scars, you know, like any surgery leaves us, you know, and she [Helena] says that this is a sign of a winning person”. Nina explained that her wife’s support was physical and emotional: “(…) She was very present in everything, in everything. In strength, to help me... everything, physically, help me in the bath, help me emotionally, right? And staying by my side (…)”. Frida said that Marília worried about her mood: “She [Marília] was very much a partner. Yeah... she did not let me be in a bad mood at all (…). She wow... she was everything. She helped me a lot”. Yele mentioned that Fernanda helps her with the side effects of cancer treatment:

Lesbian women who had breast cancer rarely reported having noticed a lack of support from their partners. Notably absent were reports about partners who did not participate in discussions related to cancer, an issue that received much focus in the context of heterosexual women. In general, the perception of support and harmony of the intimate relationship with the partner had a critical impact on the psychological well-being of the women affected (C. Souza, Britowe et al., 2024; C. Souza & Santos, 2021; White & Boehmer, 2012). All participants reported that their partners supported them a lot during and after the treatment, both concerning the emotional as well as with practical care.

In addition, partners help to redefine and cope with their girlfriends’ breast cancer by responding to their needs both at the time of diagnosis as well as several years later when survivors continue to face memories of their disease and recurrence fears (C. Souza & Santos, 2021; White & Boehmer, 2012). Débora and Yele mentioned moments when they received support from their girlfriends after having cancer. Nina and Frida brought support that occurred during their cancer treatment.

The thematic analysis allowed the construction of the following thematic axes: shock, strength, fear of recurrence, own changes, sexuality and companionship. Two participants described their partner’s cancer diagnosis as a “shock”. Helena explained that she did not know what to do when she found out that Débora was with metastasis: “(...) Now the new [cancer], at first for me it was that ‘My God what am I going to do?’ and now it continues with this ‘My God what am I going to do?’”. Marília said that, despite the shock, she thought that everything would be alright: “Well, when I found out, I really took a shock, right? But since it was breast cancer, we always have the idea that everything is going to be alright”.

Breast cancer is a disease that deeply affects not only the woman, whether they are lesbian or heterosexual, but all the people who are part of her social relationships (White & Boehmer, 2012). Spouses reported that the feelings they experienced after their wives’ diagnosis were: uncertainty, shock, anger, denial, anxiety, depression, fear, isolation, among others (Catania et al., 2019). Helena and Marilia’s speeches show how the two were affected by her girlfriends’ diagnosis and the shock of discovering the disease.

Helena brought up the “strength” she noticed in her girlfriend when Débora had to face the treatment and explained that, if it were with her, she would not be able to go through this situation: “Ah, I look at her [Débora] and wonder where she gets her strength from. Because if it were me, I would have quit treatment (...). I don’t have half the strength she has for this kind of thing”. It is important to remind sexual minority women of their great psychological resilience and ability to face and negotiate sexual stigma, which possibly helped in more effective breast cancer management (Boehmer et al., 2013, Boehmer, Glickman et al., 2014). It seems that Helena can see this resilience in her girlfriend.

Marília commented that she is “afraid of” Frida’s “cancer recurrence”: “I believe she is afraid of the disease coming back, and so am I, okay? We talk about this from time to time, right? (...) I also, from time to time, think – I try not to think, right?”. Fear of cancer recurrence is common among the partners of lesbian and heterosexual women who have had breast cancer, and the survivor’s fear is affected by the caregivers’ fear of recurrence, which shows that interventions with caregivers are likely to benefit patients (White & Boehmer, 2012; Catania et al., 2019).

Two participants talked about the “changes” they had noticed “in themselves” when accompanying their partners who had cancer. Fernanda said that she believes that cancer changes the meaning of life of the person affected and that Yele brought this new look also to her life: “(...) And I think that cancer changes the meaning of life for the person. And I think she [Yele] brought a lot of this to me too (...)”. Marília said she learned to be more tolerant during her partner’s treatment: “I worked a lot on the issue of tolerance. (...). I think I had to work very hard on this issue of tolerance. Because Frida already has a very difficult personality, right?”.

Finding positive meaning after facing breast cancer, such as a greater appreciation of life, can be an important resource for coping with the disease and its difficulties, and can lead to an increase in positive coping strategies (Hamama-Raz et al., 2019). It seems that Fernanda sees this positive coping in Yele and in herself. Moreover, study found that spouses of women with breast cancer had to change their behavior to avoid conflicts with their wives (Neris et al., 2018), which seemed to be the case with Marília.

Marília also brought up that the “sexuality” is affected after the treatment of breast cancer: “(...) Because after Frida started doing the treatment, these hormonal issues (...). And there was a libido that was [sound of something decaying], do you understand? Down there”. Fernanda, on the other hand, said that she did not perceive difficulties regarding this issue: “(...) I didn’t see any difference [regarding sexuality]. She [Yele] even commented that normally after cancer, women tend not to get lubricated, it doesn’t excite, you know (...). But in Yele’s case it is quite different”.

In the studies on sexual functioning and breast cancer in lesbian and bisexual women, researchers found that having a history of cancer did not explain the risk of sexual dysfunction or sexual satisfaction. However, cancer status did explain sexual frequency, desire, lubrication, arousal, and pain (Boehmer et al., 2013; Boehmer, Ozonoff et al., 2014). These difficulties were indeed perceived by Marilia in her relationship with Frida, but Fernanda did not perceive any difference regarding sexuality.

Furthermore, two participants talked about “accompanying their partners” in several moments. Marília said she stayed with Frida during quiet times: “(...) So, what you can do is to stay there, to be with her. (...) Even being together, quiet, without saying anything, the silence, right? Communicating only through silence (...)”. Fernanda stated that she accompanies Yele during physical exercises and when she must take medicine.

The literature has shown that the partners of lesbian and heterosexual women with breast cancer are able to offer support and comfort to their wives, as well as help with practical and instrumental tasks, such as dressing asepsis (Inocenti et al., 2016; C. Souza & Santos, 2021). It is extremely important for the physical and psychological improvement of patients that spouses care for their wives in the moments after surgery and are sources of support and understanding during moments of vulnerability (Inocenti et al., 2016).

Marília and Fernanda showed that they act as a source of support and as someone who provides care for their partners, either by being more tolerant with the girlfriend who had breast cancer, being there for her in times of suffering and silence, accompanying her in physical exercises, or remembering her to take the medications.