The marked body: Exploring experiences of post-mastectomy scarring, body image and change through artistic tattooing

Abstract

Breast cancer has become the most prevalent cancer globally, predominantly affecting women, with mastectomy surgery a frequent treatment. Women often experience a discrepancy between their post-mastectomy body, and their former sense of self, affecting negatively on wellbeing. The narratives of eight women who chose to artistically tattoo over their mastectomy scars were explored in this study, through semi-structured interviews and Interpretative Phenomenological Analysis (IPA). Seven master themes are presented. These themes follow the women from a state of disruption (of body image and gender identity) and surgical scarring as the first marking of the body, to the second marking of the body through artistic tattooing, bringing with it transformation, acceptance, feeling heard and connection with the artist, closure and control and the creation of significance and meaning. Viewed through Self-Discrepancy Theory, the findings of this study has implications for psycho-oncology and wellbeing support for women following mastectomy surgery.

The most prevalent cancer globally in 2020 was breast cancer, with 2.3 million women diagnosed in 2020 and 7.8 million women living with a breast cancer diagnosis (World Health Organization, 2021). Treatment approaches for breast cancer include surgical mastectomy, the removal of one or both breasts, with 45% of women diagnosed with breast cancer in Australia in 2019 undergoing mastectomy surgery (Royal Australasian College of Surgeons, 2021). Clinical best practice recommendations include discussion between clinicians and breast cancer patients of breast reconstruction options prior to breast cancer surgery (Cancer Australia, 2023). Breast reconstructive surgery rebuilds the breast shape with prosthetic implants or own (autologous) tissue transfer (Flitcroft et al., 2020). There are various factors that influence women’s choices to undergo reconstructive surgery, including co-existing medical conditions, financial constraints and concerns around cancer recurrence and not all women choose reconstruction (Ng et al., 2016). The alternatives to breast reconstructive surgery are wearing breast prostheses or living with the flat post-surgical chest (Cancer Council NSW, 2021).

For many women, post-mastectomy scarring, with or without reconstructive surgery, negatively influences identity, sense of self and how a woman interacts with and experiences her body (Everaars et al., 2021: 227; Piot-Ziegler et al., 2010: 491; Slatman et al., 2016). Whilst there is evidence that breast reconstructive surgery may assuage these negative experiences of the post-mastectomy body for some women (Dempsey et al., 2022; Matthews et al., 2018), the physical scarring and post-surgical changes to the body can become the focus of the embodied self and identity, leaving some women feeling ‘mutilated’, unfeminine and disembodied (Everaars et al., 2021: 227; Piot-Ziegler et al., 2010). Positive renegotiation of the experiences of scarring may include reframing it as a visual reminder of the removal of cancer and preservation of life (Brunet et al., 2013; Matthews et al., 2018; Sun et al., 2018), however research consistently indicates that acceptance of the altered, scarred body disturbs corporality, embodiment and body image (Brunet et al., 2013; Everaars et al., 2021; Gass et al., 2019; Piot-Ziegler et al., 2010; Slatman et al., 2016; Sun et al., 2018). Moreover, it has been demonstrated that ongoing psychological distress associated with cancer is associated with ongoing health problems. It is critical therefore that options that may potentially alleviate post-mastectomy psychological distress are identified and considered, beyond breast reconstruction and/or cosmetic nipple replacement.

Distorted body image has been reported as a common feature of women’s experience of breast cancer, particularly as they encounter differences between their pre- and post-cancer bodies, and become aware that some aspects of their body may never recover to a pre-cancer state (Morales-Sánchez et al., 2021; White, 2000). The ‘embodied body image’ (Hopwood and Hopwood, 2019: 211) encompasses the aesthetic and physical changes, and changes in body function. These changes must be considered within a physical and social context, including the multiplicities of experiencing the body privately and the societal norms of a female body and function. Ongoing side-effects from cancer treatments and preventative interventions may continue to affect a woman’s embodied body image for many years, affecting a woman’s self-perception (Morales-Sánchez et al., 2021).

Self-discrepancy theory (SDT) highlights the role of belief compatibility and the relationship between body image and self-perception. Higgins (1987) suggested we hold an internal self-concept, beliefs about our actual characteristics and attributes, including those internalised from others; how we think others perceive us. We also hold self-guides as to our ideal characteristics and attributes. This is a ‘desired self’, but with the added pressure that we think we should be that self now; rather than an aspirational self to grow and develop into. Psychological discomfort arises when there is incongruence between how we perceive our ‘actual’ self, and our ‘ought’ self, and the greater the sense of incongruence, the greater the level of discomfort or distress (Higgins, 1987). The psychological and emotional impact of breast cancer and surgical mastectomy may be understood through this framework. The highly visual reminder of the post-mastectomy body may create or add to the sense of incongruence women feel between their current, lived reality and their internalised perception of their pre-cancer self, including the female form, femininity, identity and sexuality (Sun et al., 2018).

Breast cancer surgery and treatment is associated with a loss of agency and disconnection from one’s own body. Previous research has demonstrated that the disturbed, discrepant experiences of the post-cancer body can create a sense of shame, frustration and fear, representing challenges to one’s femininity, identity and sense of self (Everaars et al., 2021; Gass et al., 2019; Slatman et al., 2016). Archer et al. (2018: 1599) described mastectomy as disrupting ‘the norm of being a two breasted woman’. These experiences and emotional vulnerability can motivate concealment of the discrepant body. These concealment seeking strategies are described by Slatman et al. (2016: 1620) as ‘image management’, attempting to control how scars and the changed body is shared.

Artistic tattooing is one approach women may use to manage their image. Nipple areola treatment, medical cosmetic tattooing of the areola, is offered to women as a final step in the breast reconstructive process and it remains in the domain of bio-medical treatment. Artistic tattooing may provide a means of concealment of the changed post-cancer chest and surgical scarring (Reid-de Jong, 2022). Marking of the physical body with an artistic tattoo may also be a means of rebuilding agency outside of the medical treatment of cancer (Kang and Jones, 2007; Reid-de Jong, 2022; Strübel and Jones, 2017). The designing and placement of a tattoo can return a sense of control over one’s body. Whilst tattooing of mastectomy scarring is an emerging area of research, findings indicate it can be experienced as transformative and restorative (Reid-de Jong, 2022; Strübel and Jones, 2017). Dann and Callaghan (2019) emphasise the importance of the agentic space and personal meaning in tattoos, whereby women can explore and redefine their sense of self, communicated through the body and tattoo. Eschler et al. (2018) describe the potential for tattooing to support post-traumatic growth following a cancer diagnosis and treatment, highlighting the potential significance of post-mastectomy artistic tattooing in helping women reframe their post-cancer body.

Research clearly demonstrates that women living with a post-mastectomy scarred body may suffer emotional and psychological vulnerabilities that challenge their sense of self and how they experience their post-cancer body (Gass et al., 2019; Piot-Ziegler et al., 2010; Slatman et al., 2016; Sun et al., 2018). This current study aims to engage with women’s experiences of artistically tattooing and covering post-mastectomy surgical scarring. Specifically, seeking to understand what factors influenced their decision; how the participants experience their tattooed body and the process of tattooing; exploration of changes in perspective of their post-surgery body, pre and post tattoo. Two research questions are addressed: ‘how artistically tattooing mastectomy scars change how women perceive their post-cancer body?’ and ‘how women experienced their evolving self from these experiences of the body?’

Methods

Ethics approval was obtained from the Human Research Ethics Committee of Charles Sturt University protocol number H22072.

Participant recruitment material invited interested women who met the following criteria to participate: aged 18 and over; diagnosed with non-metastatic breast cancer, who had undergone a mastectomy and have tattooed, or were in the process of tattooing their mastectomy scars. The decision to only recruit women was partly due to time constraints and partly because women are over-represented in the diagnosis of breast cancer. Nonetheless, the authors acknowledge that breast cancer is experienced beyond people who identify as women.

Recruitment was conducted initially in Australia, via social media and the Breast Cancer Network of Australia (BCNA). Due to a lack of interest in participating in the Australian context, recruitment was broadened to the USA through the Personal Ink (P.ink) organisation (USA).

The study was positioned within a constructivist theoretical framework, with an interpretative phenomenological analysis (IPA) approach. This methodological positioning allows the researcher to consider the construction of knowledge, perspective and how individuals experience their realities (Sommers-Flanagan and Sommers-Flanagan, 2012). The idiographic and hermeneutic approach to analysis allows a deep understanding of both the individual and their context (Smith, 1996).

Semi-structured interviews were conducted with eight women, July and August 2022. This sample size, in line with IPA, enabled rich, immersive engagement with data and interpretations across individual narratives and convergent experiences (Smith and Fieldsend, 2021). The interview outline was developed to seek each participant’s version meaning-making and interpretations of their lived experience (Pietkiewicz and Smith, 2014). In keeping with the idiographic principles of IPA, interviews of the eight participants were analysed independently of each other, before moving to exploration and integration of master themes across all interviews (Peat et al., 2019). Each participant was given their transcript, with an invitation to review, change, clarify, remove or add to their data. After each participant had the opportunity to engage with their data in this way, an initial analysis of their transcript (and any additional data) was conducted, and a thematic map created. Each thematic map represented the first author’s shift from interviewer to analyst; to ‘walk along side’ each participant, as recorded in their interview, responding to the transcript through observation and interpretation, carried out with an attitude of questioning (Huff et al., 2014). The thematic map was presented as list of key words and key themes. Each theme was elucidated in the map with a series of bullet points which formed the theme, made up of short excerpts, main interpretations and ‘gems’ interpreted as being of psychological value and relevant to the research questions (Huff et al., 2014). Maps were used in this research as a means of communicating with participants about how the analyst captured, interpreted and understood each individual participant. Each participant was asked to review their thematic map, and comment on interpretations made, and meaning created if they wished to do so. By including participants in multiple stages, they were part of the iterative approach to creating insights in this study (Peat et al., 2019). Following feedback from participants on their thematic map, additional individual analysis was conducted before looking at how the narratives of all the participants converged and diverged to create further insights into the phenomena of post-mastectomy tattooing.

The research was conducted by the authors in a student-supervisor relationship as part of the first author’s Research by Higher Degree (RHD) studies. Therefore, in this instance, the analysis was primarily conducted by the lead author, following the process set out by Smith and Osborn (2008). The second author audited the IPA (Spiers and Riley, 2019). Both authors engaged in reflexivity, and reflexive statements are provided as supplemental material.

Findings

The women in this study are identified by pseudonyms: Lily, Daph, Taku, Buddleia, Hannah, Henshin, Alice and Anjana. Lily and Henshin were aged 35–44 at the time of interview, and both had undergone two unilateral mastectomies in separate surgeries. Daph, Taku and Buddleia were all aged 45–54 and had undergone bilateral mastectomies, as had Anjana who was over 55 years old at the time of interview. Hannah, aged 60–65, and Alice, age undisclosed, had both undergone unilateral mastectomies. All of the women, other than Daph and Taku, had also undergone breast reconstructive surgery. At the time of interview, all women had completed their artistic tattoo, other than Taku and Alice, who had scheduled, but not completed the tattooing process.

The findings presented here are confined to the master themes. The researchers acknowledge this does not diminish the importance of every word and experience the participants have shared with the researchers. The researchers acknowledge this before discussing the themes generated during this study.

Seven master themes were generated. The first three master themes represent the physical and psychological experiences of the women flowing out of having breast cancer and mastectomy (either bilateral or unilateral). The remainder of the themes focus on the psychological experiences of the self related to the artistic tattooing process, and to having the tattoo moving forward.

Disrupted body image

Sub theme: Abnormal body experience

The post-cancer, pre-tattooed body was experienced by most of the women as an abnormal body, disturbed and disconnected. Seven of the participants explicitly referred to their sense of disconnection with, and dislike of, their post-cancer body. These experiences ranged across several dimensions of self-loathing, discomfort with the visually changed body, vulnerability and fear of exposing the changed body. Lily described how she ‘hated’ her ‘lopsided’, post-cancer pre-reconstructed body, whilst Daph felt ‘very self-conscious’ and feared judgement of others around being ‘flat’, describing the physical ‘aftermath’ of treatment as ‘just making me feel bad’. Such experiences manifested as being unable to look upon a physical body from which they felt alienated.

. . . I couldn’t look at myself. I found it really hard to even look down for a long time . . . it got harder and harder to look . . . I found it really hard to look in the mirror for a long time [Daph].

. . . I didn’t see me. I didn’t see me anymore . . . I just feel like if I was standing in front of the mirror, it was more that’s all I saw of what had changed, what was missing, and what had changed . . . [Buddleia].

However, whilst Taku’s primary narrative reflected a discomfort with her post-cancer body, concurrent feelings were expressed around being okay to look at her body herself. The more emotionally disruptive experience for her was around physical intimacy with her partner post-mastectomy.

I must say I don’t have problems to just look in the mirror . . . That for me is okay. But when I am being intimate with my husband, I just [pause] I can’t do it. It just doesn’t feel right [Taku].

Anjana did not overtly speak of a disrupted experience of her post-surgery body, yet the disruptive nature of the surgery on her embodied self was evident in her description of the mastectomy.

. . . the actual mastectomy itself. How absolutely degrading it is . . . I felt so humiliated . . . it was so degrading [Anjana]

Daph characterised the erosive nature on the women’s embodied self when she describes how uncomfortable looking at the changed body was as it ‘ate away’ at her.

Sub-theme: Breast as functional

For some participants, the disruption of the function of the physical body was influenced by their internal representation of the breast and nipple. Losing the breast and nipple were viewed in the context of motherhood and breast feeding: ‘I’ve been breastfeeding . . . they’ve served their purpose’ (Taku), ‘ . . . nipples. . . .all about feeding the baby’ (Alice), whilst for others, it centred around the function of intimacy ‘. . . I don’t have any nipples . . . men are just sometimes fixed on . . .’ (Buddleia). Several of the women emphasised this loss of a functional part of themselves through their reflections on medically tattooing a cosmetic nipple on reconstructed breasts. Lily saw this as ‘literally for show that doesn’t have any feeling, no sensitivity, no nothing, so what was the point’ and Henshin explained ‘I also didn’t understand why you would have this non-functioning nipple . . . that never spoke to me’. Alice had completed cosmetic medical tattooing of the nipple but suggested it did not serve the primary purpose of a nipple:

. . . the nipple I have now is not gonna feed a baby . . . no amount of artwork . . . is gonna make it feed a baby. . . to me that’s the like the part of being a woman of why you have a nipple.

The breast and nipple are a functional part of many women’s sense of self. It has a role to play in motherhood, and in sexual intimacy. All of these women expressed that the loss of the breast was the loss of a functional part of themselves that cannot be replaced with a non-functional look-alike. Buddleia added to this largely convergent narrative when she explained that the process of surgical nipple tattooing was still in the realm of medical treatment, as contrasted with artistic tattooing which was distinct from medical treatment, and more about creating and expressing the self.

Disruption to gender identity

Three participants specifically referred to the mastectomy embodying a loss of femininity. This was not an explicit theme for all participants, but for Taku, Lily and Daph, losing the breast and nipple challenged their sense of being and feeling feminine. The discrepancy between their actual post-cancer body and their own ideals of the feminine form disrupted their gendered sense of self, creating emotional vulnerability. Taku’s discourse around mastectomy and intimacy highlighted her perception of the importance of breasts for her in being intimate and attractive as a female

. . . if we split and like I would never be able to find a new partner because it’s [pause] it’s not like something like as soon as your intimate, you can’t hide it anymore . . . it’s exposed . . . and you’re just not a normal woman anymore . . . start to think it will be harder to [pause] to find new love if [pause] if you don’t have breasts

For Daph, her post-cancer body no longer felt female, ‘. . . I had nothing feminine left . . . I’d lost that aspect of being female’, and Lily felt ‘really, really unfeminine’ having just one breast.

The context of relationships influenced this theme in different women’s narratives. Influencing a woman’s experience of her sense of post-mastectomy femininity, highlighted by the different experiences of Taku and Hannah. Hannah spoke of her long-time husband’s acceptance of her changed feminine form, ‘. . . I love you no matter what. You can have no breasts, you can have one breast, it doesn’t matter’ and Taku described the strained intimate relationship with her husband and her fear of rejection as ‘not a normal’ woman in any new relationship.

Experience of scars: The first marking of the body

All participants had largely negative narratives around physical scarring of the body following mastectomy surgery. Some participants communicated shock and distress with the visual appearance of the scarring. Taku described being ‘ . . . literally scarred for life’ and unprepared for ‘how big the scar was ’, and for Buddleia ‘all I saw was the scars. . . I didn’t see me anymore’, whilst Henshin repeated that she felt ‘. . . carved up. I felt like I looked carved up’. There was some ambiguity within the narrative of two of the participants around scarring and contradictory experiences, highlighted through contrasting statements. Lily described how ‘ . . . your scars tell your story’, suggesting the scarring ‘never bothered me that much’, however an inner contradiction around scarring was illustrated through the insightful later statement of ‘ . . . now that they’re covered, uh, maybe they bothered me more than I realised but, um, I didn’t think they bothered me that much before’. Anjana described ‘ . . . the scarring was difficult at first. But they do fade some. And after a couple more surgeries I just didn’t care’, yet one of the first things Anjana mentioned she did post-tattooing was checking if scarring was still visible.

Unsurprisingly, scarring was a motivating reason to seek out artistic tattooing. Alice was motivated to ‘help mask the scar’, emphasising scarring ‘really, really, really bothers me’. Henshin explained ‘. . . I definitely wanted the scars covered up’, and Buddleia stated ‘I wanted the scars covered but I also wanted to be happy with what I saw’. Hannah particularly described her post-surgery body as ‘. . . a sort of blank canvas with scars’, suggesting the post-surgery altered body offered an opportunity to rewrite her story on the now ‘blank’ physical space. Indeed, for Hannah this blank canvas feeling provided her the context to reframe prior childhood introjects around her body image, opening herself up to acceptance of her tattooed post-cancer body.

Narratives around scar coverage communicated the hope of concealing the physical marks of cancer surgery.

. . . something that fits my body and my scar [Taku]

That was a major part of it, um, just to cover up the scarring . . . [Lily]

I spent a lot of time looking at tattoos in preparation. That sort of got me through a bit. It was that looking forward to what I could look like afterwards [Daph]

The dialogues around concealment and masking of post-surgical scarring highlighted the impacts on body image and sense of self, communicating the complex experiences of post-mastectomy scarring.

Tattoo as transformative and acceptance: The second marking of the body

At the time of interviews, six participants had completed tattooing and all six narratives conveyed how transformative tattooing was for each woman. The tattoo designing and process, including being tattooed, offered a shift in their embodied experience and sense of self.

. . . given me more confidence . . . I think more just that you can reclaim you, not reclaim ‘cause it’s not even, ‘cause I’m not the same me that I was then, so it’s like incorporating the new me and what, what is the new normal (chuckles), I s’pose you could say that’s my new . . . my new me [Lily]

my whole self-image changed [Buddleia]

combining the new me and the old me and making it a better me [Anjana]

The tattoo served as a unique agent of change for Hannah, from choosing a design symbol that represented ‘courage’, to her admiring the aesthetics which facilitated a reframing of previous negative self-image, and promoting a deeper connection with her body.

. . . it definitely has helped me feel better about myself physically . . . I’m really cool . . . I am more open with my body now too [Hannah]

Further, Hannah’s own experience with tattooing shifted a pre-existing mindset regarding tattoos, with Hannah highlighting the significance of the tattoo as an avenue to share her cancer narrative:

I was always kind of opposed to tattoos . . . so I’ve slowly evolved and I now see that tattoos are a way for people to express themselves

I wanna have a conversation I think . . . sometimes I’d like someone to say, ‘Oh what’s that about’, and you know, ‘Like oh well, I’m a two-time cancer survivor . . . to start a conversation

For one participant, Henshin, the actual tattooing itself provided a cathartic release of emotions, reflecting the complexity of her cancer and embodied experience, including being diagnosed with breast cancer whilst pregnant.

. . . like this different release, and I also started heaving, sobbing, crying . . . ‘til that point I’d just been running . . . taking care of everything else and not taking care of me . . . finally taking care of me . . . I didn’t stop crying for like [pause] days

While the narratives above are suggestive of women gaining closer alignment between their desired and actual selves through their artistic tattoo, Daph expressed a more complex array of experiences. For Daph, the tattoo offered elements of transformative change, helping her to ‘ . . . get femininity back . . . the tattoo was a way, when I had no breasts . . . it helped with acceptance’, yet concurrent feelings of self-consciousness remained around how others might perceive her ‘flat chest’. Despite the discrepancies around Daph’s ideals of self and others, she ultimately declared she did not ‘care what other people think anymore’. Daph was the only participant who had completed tattooing at the time of interview, and not had breast reconstructive surgery, and this may have been an influencing factor in her ideal internal representations of the body. Without prompting, Taku and Alice had tattooing completed post interview and contacted the researcher, keen to share their positive experiences with being tattooed. Taku described herself as feeling like a ‘warrior’ and ‘happy’ with the tattoo, whilst Alice described feeling ‘ . . . so happy. It is more beautiful than I could have hoped for’. Given Alice’s dissatisfaction and unhappiness with the previously medical cosmetic tattooed nipple, which Alice had described as being ‘sad’ and ‘mopey looking’, this experience represented a dramatic contrast. For both women, there was joy in their embodied sense of self following artistic mastectomy tattooing.

Feeling heard and connection with artist

Each of the narratives of the eight participants reflected their experience of breast cancer treatment as invasive and disempowering.

. . . at the end I was just like why do I have to keep going through this. Like I just want it to be over with, you know and I was feeling sorry for myself [Hannah]

I felt very, like, I was just wasn’t really being heard or listened to much. It was sort of like, ‘Okay, we’re going to put you on this hamster wheel of this, you’re going over here onto this’, and I didn’t feel, um, I just . . . I don’t know [Henshin]

. . . the actual mastectomy itself. How absolutely degrading it is. Not only are you losing your breasts, and a lot of times part of your lymph nodes so your arms will swell after that, but they don’t tell you that you can’t move your arms after the surgery. . . . I remember the first time I got up to go to the bathroom and I had to call the nurse to wipe me, I cried and I cried because I felt so humiliated [Anjana]

To varying degrees, these experiences, impacted individual’s sense of agency, and for some, led to feeling emotionally vulnerable and exposed. For Lily that vulnerability was reflected through feeling exposed on the tattooist table, illustrated in Lily’s comment of the experience as ‘ . . . confronting,. . . your chopped up boobs in someone’s face for hours on end’. The use of the words ‘chopped up’ epitomising a sense of exposure of her visceral dehumanised embodiment.

The narrative of feeling disempowered was juxtaposed with the sense of agency offered through the tattooing process and feeling heard by the artists. This was highlighted in the dialogues around the collaborative nature of the artist/participant interaction.

I felt comfortable with her [Lily]

You know she wasn’t just like ‘Oh here, this is what I’m going to do to [you] . . . for you’. It was like, ‘Do you like it? Do you want me to change it? Is there anything you want different?’ . . . So I felt that she took care and time and trying to make it the best that it could be. I’d chosen well [Hannah]

She knew I was anxious and shared the design ahead of time which they never do [Buddleia]

The significance of feeling heard and validated was expressed through Anjana’s description of how the artist worked to ensure a sense of integration of a pre-existing tattoo and the new mastectomy tattoo design. The language and description conveyed how very different the experiences of breast cancer surgery and tattooing were for Anjana:

And then the tattoo artist actually worked with the old tattoo to kind of go over it in certain spots and make it all look like it was just all done at the same time. I thought it was kind of cool and kind of very me because even though I’m always changing and always new . . . there’s part of me that’s always coming along with me and I think that’s representative of that. But the tattoo artist actually worked with me . . . it was kind of like combining the new me and the old me and making it a better me. Yes, it did make me feel comfortable. He was. . . he just wanted to make sure that I understood every part of what he was going to do. And he said, you know, ‘We can stop whenever you want to, we can reschedule another session, all of this is controlled by you’.

Participant narratives around feeling heard and understood by the tattoo artists indicated that this played a role in facilitating the transformative experiences of mastectomy tattooing.

Tattoo offering closure and control

Five of the six participants who had completed tattooing at the time of interviewing described how the tattooing process and/or tattoo represented regaining a sense of control of the self, body and closure of the cancer experience. Lily powerfully described the tattoo as signifying her reclaiming control ‘. . . final F you to cancer. This was my closure, my end game . . . take that last bit of power back’, whilst Anjana’s use of ‘finale’ in her comment ‘ it was over at that point . . . a finale’ is also a powerful descriptor, interpreted as she was ending this experience of cancer and body changes on her terms. For Henshin, Buddleia and Daph, tattooing was an action-oriented means of helping them feel that they were in control of putting the cancer experience behind them.

. . . all sorts of closure [Henshin]

I’m done, It’s beyond me, It’s behind me [Buddleia]

. . .one of the biggest, um, the biggest things that had an impact on getting past cancer [Daph]

However, for Hannah whilst the tattoo helped reframe her experience of the post-surgery self and body, it did not change how she felt about the cancer experience itself.

Relatedly, a salient part of Anjana’s interview narrative was the idea of tattoo as protection. Anjana described her tattoo as providing a ‘barrier’, interpreted by the researchers as a protective layer between her surgically marked body and the world; a metaphoric breastplate. This barrier changed how she was experiencing her body, improving her overall wellbeing. This was considered through the lens of critical past life events that Anjana had experienced and the influence of those events on her meaning-making around being tattooed. This theme around a ‘barrier’ was not explicitly identified in the other participant’s narratives.

Significance of tattoo design and meaning

The tattoo design was significant for all participants, symbolising personal meaning, scar coverage, reclaiming the body, closure and victory over cancer. This symbolism was influenced by participants’ individual inner experiences, life events and the impact of breast cancer.

I looked at it as the rebirthing . . . was all about coming out of the fire of [pause] of cancer. Out of the pain and destruction and all that sort of thing [Daph]

Well, if I start a branch here and then this is where the cancer was, and then it’s sort of growing and exiting over here [Henshin]

find something that, yeah, fits my body and my scar [Taku]

. . . I wanted something . . . I wanted something really colourful, I wanted something that I enjoyed looking at, and it . . . and it covered the scars. I wanted the scars covered, but I also wanted to be happy with what I saw, and I looked at this as kind of closing the door on this [Buddleia]

The discourse of each participant, other than Alice, conveyed a deeply personal motivation that the tattoo design captured their story and reflect a reclaimed sense of self. Alice described ‘floundering’ around design choices, indicating she felt overwhelmed and confused by design options. Importantly, some of those feelings were influenced by Alice wanting to ensure her design was not culturally misappropriated and had design integrity. Alice spoke of a need to connect the design specifically to breast cancer and the music of her recovery period. This was interpreted by the researchers as suggesting that Alice was, at the time of interview, still on her journey from her cancer experience. The contact with Alice after her tattoo was complete, described above, affirmed this interpretation.

The importance of autonomy over their tattoo design for some participants was contrasted with some participants relinquishing design control over to artists:

Whatever is coming out of his hands I want to go with it. Whatever he thinks was what my body was doing [Henshin]

Pretty much let her have free reign [Daph]

For the women in this study, they came to the tattooing experience with different needs, and different experiences of their embodiment. Gaining something positive from the design process, including meaning-making, developed as artists demonstrated the ability to hold the emotional space for participants and trust evolved.

Discussion

There is a corpus of research describing the negative emotional and psychological impacts of breast cancer mastectomy surgery and scarring and how that influences women’s body image and sense of self (Brunet et al., 2022; Hopwood and Hopwood, 2019; Piot-Ziegler et al., 2010). An emerging research area has shown that artistically tattooing the post-mastectomy body has potential to positively influence or change that post-cancer embodied experience (Reid-de Jong, 2022; Reid-de Jong and Bruce, 2020; Strübel and Jones, 2017). In an effort to contribute to that emerging area of interest, the current study aimed to explore how artistically tattooing mastectomy scars change how women perceive their post-cancer body and how women experienced their evolving self from these often confronting and highly medicalised experiences.

Through the use of IPA, the main themes generated contribute to an over-riding narrative of moving from deeply negative to increasingly positive states of mind, and embodiment. All eight women experienced negative emotional and psychological responses to their post-mastectomy, pre-tattooed body. Breast cancer surgery and scarring challenged how they interacted with and experienced their post-cancer body, leading to self-discrepancies, impacting their sense of self and for some, disrupting gendered identity. These experiences were expressed across a number of dimensions, reflecting themes associated with experiencing the body as an abnormal body, function of breasts and the visual, psychological and emotional effects of scarring. The visual changes of the post-cancer body led to self-discrepancies between an ideal and actual self (Higgins, 1987), with a range of feelings such as self-loathing, vulnerability to the perceptions of others and a discomfort with looking upon the changed, post-mastectomy body. These findings are consistent with those of Brunet et al. (2013), Everaars et al. (2021) and Piot-Ziegler et al. (2010). This disruption of body image led to some participants describing a disconnection from self and feeling alienated from the body. This feeling of disconnection from self is in keeping with findings of Grogan and Mechan (2017) and Piot-Ziegler et al. (2010).

The women in this study did not necessarily have unrealistic ‘ideal selves’; they had a specific experience of their own body and sense of self. The changes created by the breast cancer and mastectomy experience created the discrepancy between their ‘ideal’ and ‘actual’ selves. All participants shared similar feelings of the body as not being normal, however only three participants explicitly referred to a loss of femininity. The loss of the breast and nipple created an internal discrepancy between their pre-cancer experience of their own female and their post-surgery form. This manifested, for Taku, as feeling self-conscious, vulnerable and exposed around physical intimacy, which aligns with findings from Sun et al. (2018). Whilst not overtly referred to as a loss of femininity, some participant narratives around function and loss of the nipple were influenced by their internal representation of the breast and nipple. This was framed within the context of motherhood and breast feeding, reflected in Alice’s comment ‘that’s like the part of being a woman; of why you have a nipple’. Piot-Ziegler et al. (2010: 492) also found that the nipple was considered a symbol of femininity, ‘a breast without an areola is not a breast anymore’. Whether explicitly expressed or implied through meaning attached to the symbolism of the breast and nipple, losing the breast and nipple contributed to feelings of inhabiting a body that was no longer a normal functioning female form.

A clear narrative around the disturbing nature of mastectomy scarring was evident amongst all but two participants, Lily and Anjana. Lily initially spoke of how scarring did not bother her but as the interview progressed, she suggested it may have bothered her more than she realised; whilst Anjana expressed scarring as feeling less intrusive as it faded. The women’s dialogue around the visual aesthetics and emotional experiencing of scarring highlighted the complexity of living with a body scarred by cancer. Physical scarring contributed to the disruption of the embodied experience and a disturbance of self-discrepancies between participants ideal and actual self, exemplified by Henshin, ‘I felt like I looked carved up’. These findings are in line with other studies whereby women expressed feeling mutilated or butchered (Gass et al., 2019; Piot-Ziegler et al., 2010; Slatman et al., 2016). These experiences of physical scarring motivated all participants, including the two with more complex scarring narratives, to conceal the physical scars through artistic tattooing. Motivation of concealment of scarring is consistent with the findings of Slatman et al. (2016: 1620) in what is described as ‘image management’. Scar concealment provides the opportunity to have agency over how much of the scar is concealed, how the scarring is shared and with whom. The shift in agency offered by scar concealment was communicated by Hannah who described her body as a scarred ‘blank canvas’. Artistic tattooing was an avenue for Hannah to not only conceal scarring, but rewrite her narrative on her terms.

The power of artistic tattooing to facilitate a cognitive and emotional shift is demonstrated by the narratives of all six participants who had completed tattooing at the time of interviews. The women communicated the empowering experience of collaborating with artists during the design process, the balance between vulnerability on the tattoo table and surrendering to the process. This facilitated a shift in moving beyond the loss of agency during cancer treatment. There is an implied sense that tattooing provided an action-oriented space for participants that contrasted with the agency-void medical model of breast cancer treatment. Artistic tattooing provided the emotional and cognitive space to reclaim control of their own body and reframe their embodied sense of self. This was particularly highlighted in Lily’s statement of it being a ‘final F you to cancer’, allowing her to ‘take that last bit of power back’. The metaphor of the mastectomy tattoo as a protective barrier of the chest area emerged only throughout Anjana’s narrative. Whilst this was not a major theme across all narratives, the divergent nature of this theme warrants comment. The mention of the tattoo serving as a ‘barrier’ was interpreted as being significant contextual with complex previous life events and the distress of feeling vulnerable post-surgery. There was a powerful narrative in Anjana’s description of the degrading nature of breast cancer surgery and how transformative the artistic tattooing of the chest had been in providing a metaphoric guard against the pain of the past. These findings, illuminating the transformative outcomes of artistic tattooing, align with those of Eschler et al. (2018), Reid-de Jong (2022) and Strübel and Jones (2017).

The researchers acknowledge that tattooing may not be a positive experience for all women who undergo a mastectomy. Not everyone will want to get a tattoo in the first place, and even for those who do, the ability of the tattoo artist to work with each woman affects the experience. This study points to the need of some women to have a non-medical path for reclaiming or rebuilding their sense of self, and we propose that artistic tattooing is an option. Mastectomy and the resulting scar is a highly visible change to the body, and for some women, having a self-driven, visible way to regain agency within their body may be an important part of recovery.

A limitation of this study was the one interview format with participants, limited by the time constraints of the project. Participants were far more likely to be women who had a positive experience with post-mastectomy tattooing. Future research may benefit from more interviews, perhaps following women from considering a tattoo, through the process of tattooing, and beyond. This would allow for a deeper engagement with participants and exploration of their feedback on researcher’s interpretations of their experiences, while also including the narratives of women who opt not to proceed with tattooing, or whose tattooing experience is not positive. One of the authors’ personal experiences of breast cancer might have influenced the probing and direction of questioning, although this may arguably offer a unique insight into the phenomena, rather than being positioned as a complete outsider. The researcher engaged in reflexive practice throughout the study, conforming to a key principle of IPA.

Recruitment and interactions with some participants point to areas for further exploration. Participants’ eagerness to show the researcher their completed mastectomy tattooing and tattoo design (either during or following their interview) suggest that future research may benefit from incorporation of visual images of tattoos as part of the data. The personal significance of the designs and how it looked on their post-tattooed body was something participants wished to share, and was part of their narrative. Further, there were marked differences in recruitment responses, with few responses from Australia and a much greater response from USA. This may reflect differences between the two countries in how women experience breast cancer and related treatment and recovery. The role of social, commercial and medical pressures on women’s experiences of their post-operative body were only briefly explored in this study. Future research investigating influencing factors and potential cultural differences, including any differences between accepted post-cancer medical guidance, and influences on normative femininity, might provide insight into these contrasting recruitment responses.

Whilst some individual dimensional differences were observed in how women experienced their post-cancer embodied self, and associated scarring, the transformative nature of artistic tattooing was consistent across the narratives. This importantly informs the potential for artistic tattooing of mastectomy scarring to help women move beyond the psychological, emotional, mental and physical scarring of breast cancer surgery and treatment to a space of potential growth and healing.

Conclusion

The findings of this study indicated that breast cancer diagnosis, surgery and treatment can foreground the body and subsequent physical changes and scarring. For many women this can lead to emotional and psychological vulnerability in adjusting to living in a body that they may feel alienated from and which may manifest as challenging gendered identity and sense of self. The cycle of heightened awareness of the altered body and the physical aftermath of cancer treatment may contribute to a sense of being held hostage by breast cancer and the medical model of illness. For the women in this study, their narratives indicated that artistically tattooing mastectomy scarring appears to offer a restorative and transformative experience that moves them beyond that space. Their experiences indicated that the tattooing process offered autonomy and control, which they perceived as contributing to a sense of agency and closure of the cancer experience. The benefits of such a shift in post-cancer experiences may inform future psycho-oncological and social wellbeing support for breast cancer survivors impacted by mastectomy surgery and scarring.