Understanding the subjective experiences of South African women with recurrent breast cancer: A qualitative study

Abstract

This study explored the subjective experiences of 12 South African women diagnosed with recurrent breast cancer. Women were invited to take part in unstructured narrative interviews, and to complete a diary in which they could reflect on their breast cancer experiences. Most responded to their recurrence with an optimistic stance. Religious beliefs and support structures were important coping strategies. Women’s perceptions of their changed bodies varied from being of least concern, to becoming the most distressing aspect. The findings highlight the complexity of illness experience and the different ways in which women make sense of a second episode of cancer.

Keywords

breast cancer chronic illness health psychology narratives qualitative methods

Introduction

Breast cancer is the most common cancer affecting women worldwide and represents 1 in 4 cancers diagnosed among women globally (Union for International Cancer Control, 2020). According to the most recent global estimates, breast cancer accounted for 2.2 million new cases in 2020 and approximately 700,000 global cancer-related deaths (The International Agency for Research on Cancer (IARC), 2020). In South Africa, the age-standardized risk for developing breast cancer is 35.35 per 100,000 women, and approximately 1 in 25 South African women will experience the disease in their lifetime (National Health Laboratory Service, 2017). Despite the lower incidence rates of breast cancer in South Africa compared to high-income countries (HICs) such as Northern Europe, the mortality rates are similar (Cubasch et al., 2018). As these authors suggest, this is likely a result of the absence of a population-wide screening program in South Africa, leading to more advanced stages at presentation. Despite being a limited-resource setting, South Africa has multiple tertiary referral hospitals for specialized cancer care, and treatment is available in both the private and public oncology facilities (Cubasch et al., 2018). With continued advances in cancer care leading to improved survival rates both in South Africa and globally, it is expected that survivors will live longer, but that a considerable proportion of women will experience disease recurrence (Walstra et al., 2019).

Compared to an initial diagnosis, the return of breast cancer is considered to be a far more devastating and distressing event (Elmore et al., 2019; Sarenmalm et al., 2009). Recurrent breast cancer refers to breast cancer that has returned after initial treatment has ended. While the initial treatment is aimed at eliminating all cancer cells, some cells may have survived, remained undetected and subsequently multiplied, becoming recurrent breast cancer (Havas et al., 2017; Mayo Clinic, 2018). While there are no published details on the incidence of breast cancer recurrence in South Africa, and limited evidence is available on the patterns of recurrence, recent international randomized control trials reported that as much as 20% of women treated for primary breast cancer, who presented with no evidence of disease during follow-up, later experienced recurrences (Colleoni et al., 2016; Geurts et al., 2017).

Although women’s stories of living with breast cancer have been well documented in the literature (Smit et al., 2019), the qualitative exploratory literature documenting experiences of breast cancer recurrence remains scant (but see Sarenmalm et al., 2009), with most studies focusing on health-related quality of life (HRQOL) amongst those such affected (Elmore et al., 2019). Studies focusing on HRQOL have shown that the return of breast cancer profoundly affects various life domains, with those diagnosed generally reporting lower coping capacities, higher levels of emotional distress and worse perceived health (Lidgren et al., 2007; Sarenmalm et al., 2007, 2009; Thornton et al., 2005). As such, understanding the subjective experiences of women with recurrent breast cancer, particularly in developing countries, is an important gap in the literature which we sought to address. In this study, we sought to explore and understand the subjective experiences of South African women with recurrent breast cancer. We used a narrative approach to capture women’s stories, the details of which are provided in the section below.

Method

Design

This study used a qualitative, exploratory design and an interpretivist epistemology whereby priority was given to the subjective accounts of informants (Blanche et al., 2006).

Participants and recruitment

We recruited South African women over the age of 18, proficient in either English or Afrikaans (the latter being one of South Africa’s 11 official languages¹) and with a recent (in the previous 6 to 12 months) confirmed diagnosis of recurrent breast cancer. Using purposive sampling, participants were recruited from a government-funded breast clinic located in a tertiary-referral hospital in the Gauteng Province of South Africa. The first author recruited participants through weekly visits to the breast clinic, during which women were approached in the waiting area and invited to participate in the study. An additional recruitment strategy involved requesting the help of patient navigators (consisting mostly of a team of lay, volunteer counsellors, all breast cancer survivors) and nursing staff at the breast clinic in order to identify patients that met our inclusion criteria. If women met the inclusion criteria and were willing to take part in the study, they were asked to complete a contact permission form, thereby giving the first author permission to contact them via their preferred communication method (i.e. cell-phone, telephone or email) in order to arrange a convenient date, time and location for data collection. Prior to the commencement of data collection, participants gave written consent, indicating their willingness to participate in the study. Participants’ identities were anonymized, and pseudonyms have been used throughout this article. This study was approved by the Health Research Ethics Committee at Stellenbosch University (clearance number: S17/07/113) and the Gauteng Department of Health. Participants were recruited between May and November 2018, and data collection commenced after each successful recruitment.

Data collection

The first method of data collection involved face-to-face, unstructured narrative interviews, which took place at participants’ preferred location: either at their homes or places of employment (in private settings). Prior to commencing with each interview, participants were asked to complete a short biographical questionnaire, containing information such as date of birth, marital status, number of dependents, home language and ethnicity. Also included were the participant’s breast cancer history, the date of initial diagnosis, stage at diagnosis, diagnostic instruments used, treatment plan (both for the initial diagnosis and the recurrence), and the time lapse before the recurrence was confirmed. Completion of each questionnaire took no longer than 10 minutes, after which the narrative interviews commenced.

To begin each interview, the first author asked the following question: ‘Can you tell me about your breast cancer story – start at the beginning and tell me what happened’. A topic guide with seven broad questions and supplementary probe questions was used to facilitate the emergence of participants’ stories (Riessman, 1993). Interviews ranged from 25 to 122 minutes and lasted an average of 43 minutes. On completion of the interview, participants were compensated with R60 (approximately US$5) per hour for their time, input and inconvenience, and all travel costs were reimbursed.

The second method of data collection involved giving participants diaries² as a means to document their experiences, perceptions and feelings about their breast cancer experiences. Diaries were considered a useful strategy in allowing participants to respond to researcher-related topics, while being able to reflect on their experiences in a manner that is less influenced by memory recall (Alaszewski, 2006; Jacelon and Imperio, 2005) and in a setting that is presumably less influenced by the intrusive presence of the researcher (Mannay, 2016). Inside the cover of each diary, a brief instruction was given (adapted from Emilsson et al., 2012) stating that participants could write or depict anything to do with their breast cancer journeys and that they may use drawings, photographs, magazine gut-outs, of anything of their choosing to tell their story. Some women included drawings and magazine cut-outs in their diaries, but findings related to visual data have been reported elsewhere (Smit et al., 2021; Smit, 2021). To ensure that participants had enough time to document their written stories, they were asked to keep their diary for a period of approximately 3 to 4 weeks. After completing the diary component of the research, participants were compensated with R100 (approximately US$7).

Once participants indicated that they had written enough, their diaries were retrieved. The first author conducted an unstructured follow-up interview with the aim of clarifying or eliciting further information about the events/stories chronicled in the diaries. An example of a follow-up interview question is: ‘On this day you wrote that you were feeling sad, can you tell me more about that?’. Each follow-up interview ranged between 10 and 41 minutes. Participants were, once again, compensated for their time and input with R60 (approximately US$5) per hour.

Data analysis

All data were audio-recorded with participants’ permission and transcribed directly into English. The transcripts were subsequently uploaded onto ATLAS.ti (version 8) for data analysis. In line with the principles of thematic analysis (Braun and Clarke, 2006) the data were analysed using line-by-line coding to create semantic (descriptive) codes to meaningfully describe each relevant quotation. The first author coded the transcripts, and the coding was subsequently checked for accuracy by a master’s student as well as by one of the co-authors of this article. Both found the coding to be accurate and thorough. The final number of first-order codes amounted to 725.

Axial coding was then systematically applied to each code, generating 23 broad categories of constructs that were grouped together based on shared semantic attributes (Smit et al., 2019). Examples of categories include ‘treatment’ and ‘family’, describing codes related to treatment and participants’ families respectively. Once each code had been grouped into a category, the codes were then exported into an Excel spreadsheet where they were further analysed inductively (Charmaz, 2006). In this step, the individual codes were sorted into first-, second- and third-order themes. First-order themes are the direct quotations given by participants, second-order themes are the researcher’s interpretations of the participants’ quotations, and third-order themes represent higher-level analytic themes derived from the synthesis of first- and second-order constructs (Smit et al., 2019).

In the final part of the analysis, the frequencies with which the codes appeared in the data were identified by arranging the first-order codes according to the highest to lowest number of supporting quotations. Generating code frequencies can help to highlight patterns in the data that may be difficult to determine otherwise (Guest et al., 2011). This approach was, given the large number of codes, rather useful. In addition, this technique helped to identify the themes that were present in nearly all of the participants’ stories, and, by contrast those that were hardly ever present (Guest et al., 2011). We turn now to an overview of the results.

Data sharing statement

All of the individual participant data collected during the study, after de-identification, have been provided alongside this article. In addition, the following are available: a spreadsheet containing the full code list and frequencies, output containing quotations with corresponding codes and analytic procedures. All of the abovementioned documents are available in Figshare as supplementary material on the SAGE Journals platform.

Results

Participant characteristics

Twelve women participated in this study, with ages ranging between 44 and 62 years (Mage = 53). Four participants indicated that they were married, four were single, three were widowed and one was separated. Most of the women indicated that they were employed on a full-time basis (n = 5), four were currently unemployed (n = 4), one had part-time employment, one had her own business and one was retired. With regard to first language, three participants spoke English, three spoke Afrikaans, two spoke isiZulu, two spoke Sepedi, one spoke isiXhosa and one spoke Setswana (the latter four are all indigenous South African languages). As per our inclusion criteria, all women had been diagnosed with a recurrence within the previous 6 to 12 months, but the time since diagnosis of their recurrence varied: 10 women were diagnosed in the same year (2018), and two were diagnosed towards the end of the previous year (2017). Eight women were diagnosed with stage IV recurrent disease, one with stage III and three did not know the stage of their disease progression. Three women had been diagnosed with two separate recurrences and had therefore experienced breast cancer three times, while the rest of the participants had experienced cancer twice. At the time of data collection, most women were being treated for their recurrent disease (n = 10), one had completed treatment and another was told that there her condition was untreatable. Treatment for women’s recurrences included various combinations of chemotherapy (n = 9), surgery (n = 6), radiation (n = 5) and two women used complementary and alternative therapies in addition to their conventional treatment protocols.

Themes

Three overarching (third-order) themes were developed from the integration of first- and second-order themes. These include: (1) illness appraisal, (2) coping and (3) body image. Illness appraisal describes how participants evaluated their illness in light of it returning. Coping describes the coping strategies used by participants in the appraisal and management of the disease. Body image describes how participants perceived their bodies in light of existing, or impending physical changes based on treatment plans they had been prescribed. All quotations from the data are italicised to indicate the participants’ direct words and pseudonyms have been used throughout. Capitalized words represent an increase in volume (i.e. participants giving emphasis to selected words).

Illness appraisal

The first theme describes women’s responses to being diagnosed with recurrent breast cancer, including their evaluations of the disease in light of it returning. Women’s perceptions of recurrent breast cancer and their ability to overcome the disease for a second (or third) time varied and could be categorized along four sub-themes. These are: determined to survive, finding the value in experience, lack of will to fight and waiting to see what happens.

Determined to survive

Reflecting on the experience of being diagnosed with a recurrence, most participants expressed a determination to fight the disease for a second time and survive. Such accounts were the most prominent, occurring in 9 out of the 12 narratives. For example, in Meredith’s diary, she wrote the following: ‘. . .[I] realized there is just one option. Must fight and stay positive’. Bonnie drew on her strength from overcoming cancer once before and regarded the second time to be no different: ‘. . .I’ve counselled myself that I’ve, I’ve undergone through that situation before. Even now I will just go through it, that, that’s what make me strong”’. (Narrative interview).

Another account where the determination to survive was apparent, was that of Heather, who wrote the following:

I don’t have to be cancer-free or in remission to be a survivor, even if cancer has spread everywhere, as long as I am fighting and living to see another day I am a survivor. NOTE TO SELF: There will be very bad days along the way but I will get through this, I will fight as long as there is breath in me. (Diary).

Finding the value in the experience

A similar kind of illness appraisal was the perception that a diagnosis of recurrence happened for a reason or that there was a greater purpose behind it. Some participants attributed their recurrence to the will of God, while others regarded it as an opportunity to help other women diagnosed with breast cancer. An example of the former is Meredith’s appraisal of her condition: ‘There’s a purpose, there is a very big purpose that he [God] is busy with, I believe. I should actually feel special that he has chosen me’ (Narrative interview).

Patricia, despite having had two recurrences, chose to find the value in her experiences by wanting to help others navigate their breast cancer experiences: ‘I hope that my story will help others. I was in the dark about cancer [. . .]. Now I have information and knowledge about the disease I can teach people about it’. (Diary). Similarly, Ursula described what she would say to other women battling breast cancer if given the opportunity: ‘I want to motivate someone tomorrow to say “man, it’s not the end of the world, I have just come from there, do this and do that, then you will see”. . .’ (Narrative interview).

Lack of will to fight

This sub-theme ran contrary to the accounts of the other participants and is therefore presented as a negative case. The exemplar of this sub-theme, Cathy, expressed uncertainty about her ability to fight the disease for a second time. Cathy had been diagnosed with advanced liver metastases, for which doctors were trying to find treatment. Eventually, Cathy was told that her recurrence was untreatable. That made her question the need to fight the disease:

. . .once you have been told ‘no treatment available’ – there is a battle between your very mind, your heart & your soul. A part of me thinks – I can probably survive this & another part of me – thinks life has been so hard – I don’t know if I have the strength to do this (again!)

Waiting to see what happens

The fourth and final sub-theme describing women’s appraisals of their recurrence, was uncertainty regarding what the future would bring. For example, Emma’s third breast cancer diagnosis had her questioning her future: ‘Now I’m thinking now if this thing is back again, now I don’t know now’s its gonna leave me alive or I’m gonna go, I don’t know’. (Narrative interview).

Similarly, for Heather, completing treatment for her recurrence brought about uncertainty as to how long she would remain in remission if it is once again achieved: ‘. . .then you gonna start the countdown to like how many years of remission are you gonna have (laughs). It’s just so uncertain’. (Narrative interview). Cathy, whose poor prognosis seemed to make her question her chances of survival, also conveyed uncertainty about her future: ‘. . .I actually thought, uh I don’t know, I’m gonna wait and see what the doctors say and all of that before I make any life changing decisions, you know?’ (Narrative interview).

Coping

The second theme describes the coping strategies women drew on in dealing with their recurrence. Two sub-themes emerged related to coping: religious coping and support structures.

Religious coping

The most prominent method of coping amongst participants was drawing on religious practices such as prayer and practicing their faith. For instance, at the thought of undergoing chemotherapy again, Margaret was comforted when she reminded herself of her source of strength: ‘I got a fright when I started thinking of the chemo. [. . .] I thought of how I was when I had chemo but I continued praying to Jesus for strength because I cannot do this on my own’. (Diary). Similarly, Sandra’s response to her diagnosis of recurrent breast cancer reveals her source of strength and comfort: ‘And then I’ve got the result they say the cancer is coming back, it’s back, but I think I’ll be fine God is there’. (Narrative interview).

Support structures

The second and final sub-theme related to coping, is a reliance on support structures. For most participants, sources of both emotional and instrumental support (i.e. helping with practical matters in daily life and in managing the disease; Malecki and Demaray, 2003) were necessary in order to be able to cope with their condition. For example, Brenda described a variety of sources of support: ‘I am so happy to get support from my neighbours, my husband, children and everyone who loves me. They tell me to not lose hope’. (Diary). She also pursued an additional avenue of support, namely an annual cancer fun walk hosted by a local non-profit organization. It seemed that Brenda found her involvement in the support structures offered by this organization to be a source of emotional relief and comfort: ‘I always go to the support group and fun walk and it makes me to forget that I am sick and it release stress and when I am at the support group I am always feel comfortable’. (Diary). Other participants, such as Gwen, relied primarily on support from close family members. Gwen described her husband as her greatest source of strength throughout her breast cancer journey: ‘And he was EVERY minute with me’. (Narrative interview).

Body image

The third overarching theme describes women’s perceptions of their bodies and the way in which these perceptions affected their self-images. To contextualize the findings related to this theme, a brief description of the specialized breast cancer treatment services available in South Africa will be provided: depending on the type and stage of breast cancer, treatment options in South Africa include surgery, chemotherapy regimens, hormone therapy, immunotherapy, radiation therapy and targeted therapy (Lince-Deroche et al., 2017). In terms of surgical services, for women in need of a mastectomy, both immediate and delayed breast reconstructive services are available in private medical facilities, as well as in a limited number of specialist breast clinics in public tertiary referral hospitals (Lince-Deroche et al., 2017). However, displaying equivalent outcomes to mastectomy on 25 years of follow-up, breast-conserving surgery followed by radiation has become the gold standard where available in South Africa (Lince-Deroche et al., 2017). Complementary and alternative medicines (CAMs) such as herbal remedies, dietary changes and spiritual healing are used amongst breast cancer patients for a variety of reasons (Salamonsen et al., 2012). In South Africa, studies have identified religion and spirituality to be a particularly important source of coping amongst South African breast cancer patients (Coetzee et al., 2019; Schoeman, 2017; Smit et al., 2020). However, such complementary methods are not formally included as part of the conventional treatment protocol in South Africa.

From the overarching theme, body image, four sub-themes emerged: health is most important, changed body is a symbol to others, body needs to be restored and appearance no longer a priority.

Health is most important

For some participants, having their health restored was paramount, compared to any changes in their physical appearance as a result of treatment. As such, their body images were not negatively affected by their existing or impending changes. For example, in Brenda’s diary, she seemed to want to draw her readers’ attention to how pleased she was about her mastectomy, owing to the confidence it gave her in seeing her health restored: ‘After doing my operation I was happy!!!!’ (Diary).

Changed body as a symbol to others

The second sub-theme describes the view held by some participants that their post-treatment bodies could be used as symbols to other women of what they have had to overcome. Notably, some women wanted to show other women that they are still beautiful despite the scars. Ursula offered a case in point: ‘I told myself I am still beautiful even if my breast has [been] removed. I will [not] let anyone or anything steal my sparkle’. (Diary).

Body needs to be restored

In contrast to the above sub-themes, where appearance was either secondary to health or the changed appearance used productively, the third sub-theme related to body image is presented as a negative case. Lucy is the exemplar of this theme. Having undergone 11 breast surgeries over a period of 6 years, Lucy spoke mostly about her inability to accept her post-operative body: ‘Even if there’s not a man in my life (sighs), there are, I mean there are women walking around with mastectomies who have accepted it. I can’t, I will NEVER be able to. Never ever’. (Diary interview). Lucy seemed to feel compelled to conform to her perception of the ideal female body (which to her, meant having two proper breasts). Her diary revealed her struggle to accept her body, as she contemplated more surgeries: ‘I said that I don’t want further operations, but I cannot accept the way I look. Disfigured breasts. Ugly!!!’ (Diary).

Appearance no longer a priority

The final sub-theme describes a reprioritization of previously held values: what they valued about their bodies before, was no longer important. What could also be described as a sense of alienation from women’s bodies, this theme was identified in four women’s narratives. Reflecting on her experiences of having a mastectomy as part of her treatment for her initial breast cancer, Patricia recalls: ‘. . .it was important – THEN it was important because I told my doctor [. . .] I can’t live without breast’. (Narrative interview). At the time she opted for silicone implants to restore her physical appearance. However, after learning about her recurrence, she no longer expressed this desire: ‘. . .this time I don’t care if I don’t have breasts or not’. (Narrative interview). Her previously held values had changed.

Similarly, reflecting on her first breast cancer experience, Cathy described her hair as something she took pride in: ‘ (laughs) I’ve had my hair cut three times in three days, because I didn’t like it’. (Narrative interview). Describing her reaction to losing her hair after receiving chemotherapy, Cathy recalls: ‘so losing my hair was like WHAT? Ok’.” (Narrative interview). However, as time passed, her hair became less of a priority, to her a clear indication that her values had shifted: ‘Then the next time I cut it off willingly, because I actually didn’t care about it. [. . .] So maybe that’s why I said you know, if I was vain about my hair, I’ve learnt not to be now’. (Narrative interview).

Discussion

In our study, the most common appraisal of recurrent breast cancer seemed to be positively oriented. In spite of women’s breast cancer returning for a second, and sometimes a third time, this reality was frequently met with a determination to survive. One possible explanation is that, in the wake of their breast cancer returning, women might have felt better equipped to face the disease again, which could have instilled a greater sense of confidence in them. Other responses were positive in that women chose to view their recurrences as an opportunity to help others with breast cancer, rather than focusing on the negative aspects of what they will have to endure.

Similar positive appraisals are found in the literature on women’s initial breast cancer experiences, including those studies undertaken in developing countries (Al-Azri et al., 2014). However, these positive appraisals do not correspond to the limited findings on recurrent breast cancer (Sarenmalm et al., 2009; for quantitative and HRQOL findings, see Bull et al., 1999; Northouse et al., 1995). At the time of writing, Sarenmalm et al. (2009) were the only researchers with published qualitative findings exploring recurrent breast cancer, providing us with limited comparative findings. Amongst their Swedish participants, these authors found negative emotions (e.g. anger, shock/disbelief, sadness, disappointment, fear and devastation) to be the most common responses to the breast cancer returning. Sarenmalm et al. (2009) described the experience of having recurrent breast cancer as ‘living under the shadow of death’ (p. 1119), with most of their participants reporting it to be devastating and life-altering event. Contrary to the general trend in our findings, one of our participants (Cathy) responded in a manner that was more likened to those of Sarenmalm et al. (2009). Displaying what seemed to be a lack of will to fight the disease, such responses are in the minority in the broader literature, as ample studies reported women framing their breast cancer diagnosis in a positive light (Bellizzi et al., 2010; Lelorain et al., 2012; Wen et al., 2017).

Despite women’s positive appraisals, elements of uncertainty about their health statuses and futures surfaced during some of their narratives. In light of their recurrence, it seemed as if some participants could no longer forecast their futures and were simply waiting to see what happens. Uncertainty about women’s futures featured prominently in the broader literature, with studies reporting women’s fears about recurrence and doubts about being in remission (Almeida et al., 2019; Powers et al., 2016). Uncertainty about the future amongst women with recurrence as seen in Sarenmalm et al. (2009) also included uncertainty of the illness trajectory and fears of future recurrences, but these authors reported an additional finding: that of women describing their certainty about future negative outcomes. Whereas the unpredictable nature of the breast cancer illness trajectory, especially after recurrence, was acknowledged by some of our participants, this uncertainty seemed to be an accepted part of these participants’ realities; they did not convey certainty of negative outcomes. Our findings are therefore suggestive of a more optimistic stance than that held by the participants in Sarenmalm et al.’s (2009) study, highlighting the complexity of illness experience and the different ways in which women make sense of a cancer recurrence. It is also worth noting that the experiences of women documented in our study seemed to reflect the nature of the individual’s illness at the time: some women were terminally ill, while others were in good health and perhaps destined to survive their recurrence (Smit, 2020). Therefore, when interpreting the findings, the reader should take cognisance that different states of health and well-being may influence the stories told.

In terms of coping, our findings revealed several coping strategies used by women. Foremost among the strategies used, was religious coping. Most women gained emotional strength and courage in their situation from their beliefs in a higher authority. We used the following definition of religion: ‘religious practice, religious coping, perception of God and religious support’ (Schreiber and Brockopp, 2012), which can be distinguished from spirituality, defined as ‘meaning in life, spiritual wellbeing and spiritual integration’ (p. 83). There is a large body of literature on religion and spirituality in breast cancer, confirming such belief systems to occupy a central theme in the narratives of those affected by the disease (Al-Azri et al., 2014; Holt et al., 2003). For example, studies have documented the use of prayer (Al-Azri et al., 2014), religious gatherings (Froude et al., 2017) and worship (Cebeci et al., 2012) amongst women as means of coping with their condition.

While responding to, and coping with, recurrent breast cancer were notable themes amongst most participants, body image varied: views of existing or impending physical alterations ranged from being of least concern, to becoming the most distressing aspect. With regard to the former, as observed in this study and others (Fallbjörk et al., 2012; Grimes and Hou, 2013), some women did not become hesitant to undergo body-altering treatment (e.g. having a mastectomy or losing their hair) because they regarded their health as being of primary importance. These participants’ body images did not seem to be disrupted by changes in their appearance. By contrast, one participant’s (Lucy) body image seemed to be negatively affected as a result of the physical alterations to her breasts. In the literature, several studies have reported women experiencing negative self-images following breast cancer treatment (Favez et al., 2016; Jørgensen et al., 2015; Tighe et al., 2011). Of importance, Sarenmalm et al. (2009) reported that some of their study participants experienced body image impairment and appraised themselves as having lost their femininity. It can therefore be suggested that women’s identities are often closely associated with their perceptions of themselves and their bodies after breast cancer treatment.

From a slightly different perspective, aware of the extent of their scars and other body changes, other women in our study chose to convey the message that a changed body after breast cancer treatment need not form part of a stigmatized identity. It could be argued that, despite significant and lasting changes in appearance, these women experienced positive growth in their identities. This finding is also supported in the literature (Brunet et al., 2013; Thibeault and Sabo, 2012). A final variation was the sense that women had become alienated from their bodies and that their previously held values regarding their appearance changed. While we do not suggest that these perceptions are necessarily characteristic of negative self-images, perhaps it could be argued that such responses are indicative of a loss of a part of these women’s identities. Indeed, Sarenmalm et al. (2009) reported similar findings, with some of their participants describing multiple losses, such as the loss of their personality, the loss of important values and the loss of health and quality of life. As such, our findings are in line with these authors’ findings in that having breast cancer return, may trigger a re-evaluation of important life values.

Implications

In oncology settings, there could be an assumption that women respond to recurrent illness in the same manner as they do to their first episode. Although most of the women in our study responded with an optimistic stance to facing breast cancer again, the limited available literature on recurrent breast cancer suggests that women generally struggle more with recurrence than their initial cancer episode (Sarenmalm et al., 2007, 2009). Healthcare professionals who encounter women with recurrent disease are encouraged to provide person-centred and sensitive care to those such affected. Additionally, since religious beliefs and practices formed an important coping strategy among the participants in our study, those providing care to women with recurrence should take cognisance of women’s belief systems and the various coping strategies they may draw on. Finally, the importance of having adequate support structures was clearly seen in our findings, as women relied on a variety of sources in this regard. As such, the role of support (i.e. from family members, friends, support groups) for those who are faced with cancer again should by no means be overlooked (see also Bosire et al., 2020). An important limitation of our study is the possibility that at times when participants provided data in a language other than English, some elements of meaning encoded in participants’ original language may have been lost in the process of translation. While our study contributed to the scant literature on recurrent breast cancer and the available literature on women’s experiences of living with breast cancer in South Africa, additional qualitative research is needed from a variety of different contexts (including other developing countries) to understand the experiences of individuals who develop recurrent disease.

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Research Data, sj-docx-10-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-11-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-12-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-2-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-3-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-4-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-5-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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Research Data, sj-docx-6-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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sj-docx-7-hpq-10.1177_13591053211002236 – Research Data for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study

Research Data, sj-docx-7-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

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sj-docx-8-hpq-10.1177_13591053211002236 – Research Data for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study

Research Data, sj-docx-8-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

Research Data

sj-docx-9-hpq-10.1177_13591053211002236 – Research Data for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study

Research Data, sj-docx-9-hpq-10.1177_13591053211002236 for Understanding the subjective experiences of south African women with recurrent breast cancer: A qualitative study by Anri Smit, Bronwyne Coetzee, Rizwana Roomaney and Leslie Swartz in Journal of Health Psychology

Footnotes

Acknowledgements

We would like to extend our gratitude to all the women who participated in this study for their time and contributions.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research authorship and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Harry Crossley Foundation and Stellenbosch University.

ORCID iDs

Anri Smit

Rizwana Roomaney

Supplemental material

Supplemental material for this article is available online.

Notes

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