Women’s perceptions of body image post-mastectomy: a literature review
Intended for healthcare professionals
Evidence and practice    

Women’s perceptions of body image post-mastectomy: a literature review

Alice Walsh Graduate BSc Adult Nursing, University of East Anglia, Norwich, England
Neil James Associate pro vice chancellor education and curriculum, University of East Anglia, Norwich, England

Why you should read this article:
  • To understand that women who undergo mastectomy following breast cancer can experience significant physical changes

  • To familiarise yourself with the negative effects of mastectomy on some women’s well-being and quality of life

  • To enhance your knowledge of the potential psychological interventions that can be used to support women following mastectomy

Women who undergo mastectomy following breast cancer can experience a variety of significant changes to their bodies, which can affect their mental well-being and quality of life. This article reports the findings of a literature review of women’s perceptions of their body image, post-mastectomy without reconstruction. The findings were categorised by four main themes: negative perceptions; positive perceptions; difference in age; and change over time.

The article also discusses the need to support women to prepare for potential negative body image perceptions following surgery, as well as the need for healthcare professionals to provide individualised care because women’s perceptions of their bodies can vary. An understanding of these perceptions will enable nurses to deliver optimal care and provide individualised post-mastectomy support, which in turn will improve women’s quality of life and well-being.

Cancer Nursing Practice. doi: 10.7748/cnp.2021.e1801

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

alice.walsh1@googlemail.com

Conflict of interest

None declared

Walsh A, James N (2021) Women’s perceptions of body image post-mastectomy: a literature review. doi: 10.7748/cnp.2021.e1801

Published online: 29 November 2021

Introduction

Breast cancer is the most common cancer among women worldwide, comprising 25.4% of new cancer diagnoses in 2018 (World Cancer Research Fund International 2018). In the UK, breast cancer is the second most common cause of death from cancer in women, accounting for around 11,500 deaths each year (Cancer Research UK (CRUK) 2018). Mastectomy is one of the surgical and adjunctive treatments for women with breast cancer and involves the entire removal of one or two breasts (National Cancer Institute 2021). Research has suggested that stress related to bodily changes is associated significantly with mastectomy without reconstruction (Raggio et al 2014, Koçan and Gürsoy 2016, Prates et al 2017) and that consideration of body image is essential in women’s adjustment to life following breast cancer treatment (Moreira et al 2011).

It is important for nurses to understand women’s perceptions of body image so that they can provide the most beneficial post-mastectomy care and support, which in turn will enhance women’s quality of life and well-being. This article reports the findings of a literature review into perceptions of body image among women who have undergone mastectomy without reconstruction.

Key points

  • Women experience a range of perceptions of their body image at various stages of recovery from mastectomy, which can affect their well-being and quality of life

  • Some women may experience positive body image following mastectomy and perceive their scars as evidence of survival; this is a reminder that healthcare professionals must avoid making assumptions about women’s bodies that are not based on evidence

  • Healthcare professionals such as clinical nurse specialists should feel comfortable discussing issues related to body image and sexuality with women and their partners, and refer them for specialist support when appropriate

  • Support should be age-specific, individualised and provided in the short and long-term if required

Literature review

Aim

The aim of this review was to explore women’s perceptions of their body image following mastectomy without reconstruction. The ‘population, factors, outcome’ (PFO) framework (City University of London 2021) was used to clarify the concept and to generate the review question: ‘What are women’s perceptions in respect of their body image post-mastectomy?’

Method

Data search

A systematic approach to the review was taken by developing inclusion and exclusion criteria to define the parameters and direct the search towards relevant literature. The inclusion and exclusion criteria are shown in Box 1. Literature was sourced through the databases CINAHL Complete, Allied and Complementary Medicine Database (AMED), MEDLINE Complete and PsycINFO using keywords to ensure a comprehensive search and to support the aim and review question. The keywords used to identify relevant literature are listed in Box 2.

Box 1.

Inclusion and exclusion criteria

Inclusion criteria

  • Peer reviewed

  • Published research

  • English language

  • Published between 2008 and 2018

  • Female

  • Women with breast cancer underdoing mastectomy

  • Research of participants’ experience post-mastectomy

Exclusion criteria

  • Not peer reviewed

  • Unpublished research

  • Languages other than English

  • Published before 2008

  • Male and transgender

  • Women with other cancers or who had not undergone mastectomy

  • Research focused on an intervention, surgical procedure or breast reconstruction

Box 2.

Keywords used to identify relevant literature

  • Breast removal or Breast surgery or Mastectomy

  • Body dissatisfaction or Body image or Self-esteem or Self-image

  • Health-related quality of life or Wellbeing or Well-being or Quality of life

The search generated 95 papers, which were reviewed and eventually reduced to five. Figure 1 shows the review process using a PRISMA flow diagram (Moher et al 2009). The five studies selected for review were appraised using the Critical Appraisal Skills Programme (2021) tool, which was chosen for its accessibility and simplicity.

Figure 1.

Review process using a PRISMA flow diagram

cnp.2021.e1801_0001.jpg

Data analysis

A manual thematic analysis was undertaken to identify and report themes across the selected papers (Braun and Clarke 2012).

Findings

The five studies included in the review were qualitative, which is an appropriate methodology for investigating people’s experiences. Grogan and Mechan (2017) and Sheppard and Ely (2008) used thematic analysis to examine their study findings, while Aikaterini et al (2017), Härtl et al (2010) and Moreira and Canavarro (2010) used statistical analysis.

Analysis of the five studies revealed four major and eight minor themes which were used to answer the review question. The themes are show in Table 1.

Table 1.

Major and minor themes

Major theme Minor themes
Negative perceptions
  • Effect on ‘femininity’ and sexual relationships

  • Mental detachment

Positive perceptions
  • Survival

  • New identity

Difference with age
  • Perceptions of body image

  • Anxiety levels

Change over time
  • Initial perceptions

  • Developing perceptions

Negative perceptions

Effect on ‘femininity’ and sexual relationships

Women experienced difficulties with their ‘femininity’ and feeling unattractive and had negative perceptions of their body image following mastectomy. For example, in a UK study Grogan and Mechan (2017) analysed the written accounts of body image after mastectomy of 49 younger women aged between 29 and 53 years. The researchers reported that participants wore clothes that emphasised their legs to compensate for a ‘perceived reduction in femininity’. Meanwhile, an Australian study of spousal perceptions of body image and sexuality in relation to partners’ breast cancer reported that one participant had ‘never fully come to terms with the dramatic assault on her body’ and that it affected ‘her conception of herself as a sexual being’ (Sheppard and Ely 2008). Furthermore, the researchers found that it was common for women to assume their partners were ‘repulsed and disturbed’ by the changes to their bodies, leading to a lack of sexual satisfaction and in some cases relationship breakdown. These findings were supported by Grogan and Mechan (2017), who found that mastectomy affected sexual relationships due to women’s loss of self-confidence.

In addition, Moreira and Canavarro (2010), who conducted a longitudinal study of body image and psychosocial adjustment in 56 breast cancer patients in Portugal, found that women felt ashamed of their body after mastectomy and became more dissatisfied with their appearance over time. Grogan and Mechan (2017) noted that some women became paranoid about their appearance and often believed others were staring at them.

Mental detachment

Grogan and Mechan (2017) reported that women ‘mentally detached themselves from their breasts’ to cope with the major changes in body shape following surgery. The researchers noted that it was challenging for women to become comfortable in their new bodies as they felt ‘lost and out of touch with their bodies’, but detachment enabled them to ‘negotiate new body identities’.

Moreira and Canavarro (2010) observed that women’s self-consciousness about their bodies was associated significantly with depression. This is supported by Aikaterini et al (2017), who examined the general health condition of 125 women aged under 45 years following various types of surgery and adjuvant breast cancer treatment in Greece. The researchers found that those who had undergone a mastectomy had statistically higher scores for ‘depressed mood’ compared to those who had undergone a lumpectomy, in which only the area of cancer is surgically removed and as much normal breast tissue as possible is retained.

Positive perceptions

Survival

Contrary to the negative reports concerning body image of many of their participants, Grogan and Mechan (2017) found that some viewed their body image positively. This was related to their desire to survive rather than be concerned about the aesthetics of their body, their priority being ‘to remove all traces of the cancer’ and ‘know it had all gone’. Moreira and Canavarro (2010) also found that body image was often not women’s primary concern in the initial post-mastectomy phase. Some women in Grogan and Mechan’s (2017) study developed a pragmatic perception of their body image post-surgery, which enabled them to rationalise their scars as a necessary show of a ‘successful battle with cancer’.

New identity

Moreira and Canavarro (2010) found that women who made an effort to maintain an ‘attractive appearance’ post-mastectomy felt more positive about their body image. Similarly, Grogan and Mechan (2017) reported that following surgery some women found strength in their altered bodies by ‘rejecting mainstream body-shape ideals’ and developing new body identities that were different from their pre-mastectomy bodies. Women established positive perceptions of their bodies by accepting and embracing their scars as evidence of ‘who they were’ and as a result achieved new identities by being unconcerned with what others thought; as one participant stated, ‘I am who I am, and I don’t go out to impress people’ (Grogan and Mechan 2017).

In general, Grogan and Mechan’s (2017) and Moreira and Canavarro’s (2010) findings indicated that not all women’s perceptions of post-mastectomy body image were negative and that body image was not always the foremost concern for women following mastectomy. Rather many women were able to develop their self-confidence and negotiate new body images that they were proud of. These findings demonstrated that women who have undergone mastectomies have a range of individual post-surgery experiences.

Difference with age

Perceptions of body image

Härtl et al (2010) examined longitudinal changes in quality of life and anxiety in 236 German women with breast cancer shortly after surgical treatment, and at six and 12-month follow-up. Participants were asked to complete the quality-of-life questionnaire QLQ-C30, Version 3.0 (Aaronson et al 1993) five times over two years. The researchers reported enhanced body image functioning in older women (aged 60 years or above) compared with younger women (aged under 60 years) shortly after surgery and at 12 months post-mastectomy.

The researchers suggested that the older women may have developed improved coping strategies resulting in more positive perceptions of their bodies than their younger or less experienced counterparts. Similarly, Aikaterini et al (2017) found that women aged younger than 45 years experienced more negative effects related to their body image compared to older women, while Grogan and Mechan (2017) identified a considerable number of negative perceptions, such as reduced self-confidence and femininity, in younger participants aged 19-45 years. However, Härtl et al (2010) found that although younger women who had undergone a mastectomy had poorer body image compared to older women, this improved over time, while Moreira and Canavarro (2010) emphasised that concerns about survival rather than body image were the main priority for young women during the initial post-mastectomy period.

Anxiety levels

The literature suggested that younger women had more short and long-term challenges with their body image post-mastectomy than older women. Heightened anxiety was one possible reason for this. For example, Härtl et al (2010) found that based on a Hospital Anxiety and Depression Scale, younger women reported higher anxiety levels than older women one year after surgery. Also, the researchers found that anxiety levels in women aged 60 years or above reduced by 9.6% over 12 months, while scores for women aged under 60 years reduced by only 1.3%. This suggested that not only did older women experience lower anxiety levels than younger women post-mastectomy, but that the levels diminished over time; conversely, while younger women had higher anxiety levels post-mastectomy, these did not improve significantly over time.

Changing perceptions

Initial perceptions

Body image was not always an immediate concern for women following mastectomy. For example, some participants in Grogan and Mechan’s (2017) study said that survival was more important initially than physical aesthetics, although it appeared that negative perceptions did begin to affect them later as they began to adjust to their new bodies. This outlines how women’s perceptions of body image changed over time.

Moreira and Canavarro (2010) aimed to ‘examine the changes across the disease’s trajectory in body image dimensions’ – these dimensions included satisfaction, body shame and self-consciousness. The researchers hypothesised that women’s body image would have deteriorated six months after mastectomy compared to immediately post-surgery, but this was only partially confirmed since the ‘body shame’ dimension was the only dimension that increased in this time. This suggested that perceptions of body image may not be a woman’s main concern in the first six months after surgery.

Developing perceptions

Härtl et al (2010) determined that for women who underwent mastectomy, body image became increasingly impaired over time. Analysis of responses to the QLQ-C30 (Aaronson et al 1993) showed that shortly after mastectomy to 12 months post-mastectomy, there was a 6.3% decrease in body-image functioning, which suggested that negative perceptions increased over time. Further analysis by Härtl et al (2010) identified an 8.77% increase in anxiety levels in women who had undergone a mastectomy at 12 months post-surgery. These figures suggested that anxiety is another parameter that changed over time.

In terms of the longitudinal relationship between body-image functioning and age, Härtl et al (2010) found that over a 12-month period following a mastectomy women aged 60 years or over had a 2% decrease in body-image functioning while women aged under 60 years experienced a 4.8% increase. It should be noted, however, that although younger women showed improvement in this parameter over the 12-month period following mastectomy, their overall scores for body-image functioning were lower than those of older women (Härtl et al 2010). These findings supported those of Grogan and Mechan (2017) and Aikaterini et al (2017), which suggested that negative perceptions of body image over a 12-month period may have an age-related component.

Discussion

The literature review has emphasised how women can experience negative body image following mastectomy in various areas including mental state, emotional adjustment and sexual activity. The findings also revealed that many women experienced shame and self-consciousness alongside low mood. Moreira et al (2009) stated that ‘women who measure their self-worth through their appearance can feel more threatened by appearance changes, contributing to higher depressive symptomatology’, which infers a link between negative body image and depression.

Emotional well-being was also found to predict psychosexual issues as women’s experiences of shame and anxiety developed into negative perceptions of their bodies, which in turn affected their sexual relationships (Moreira et al 2009). This was supported by Grogan and Mechan (2017) and Aikaterini (2017), who found that women experienced impaired sexual relationships following mastectomy. Similarly, Alicikus et al (2009), who compared psychosexual quality of life in 112 Turkish women who had either breast-conserving treatment or mastectomy, reported that those who had undergone mastectomy without reconstruction had a ‘greater risk of sexual morbidity due to perceived unattractiveness’ than those who had undergone breast-conserving therapy.

Ussher et al (2012), who conducted an online survey of 1,965 Australians with breast cancer (98% of whom were women) to examine changes in sexuality and intimate relationships, claimed that ‘sexual well-being is central to psychological well-being and quality of life’. This aspect, therefore, requires greater exploration in the context of women’s body image to address the potential negative effects that can develop post-mastectomy.

Healthcare professionals such as clinical nurse specialists (CNSs) should feel comfortable discussing these issues with women and their partners, as well as in suggesting interventions such as sexual counselling or services that support discussions about body image and sexuality (Macmillan Cancer Support 2021a). CNSs and other healthcare professionals should also develop their awareness and knowledge of the negative body perceptions experienced by women post-mastectomy by encouraging women to talk about their experiences. This would also help to ensure that healthcare professionals understand individual patients’ concerns. This idea is supported by Mącik et al (2012), who suggested that identifying emotions and thoughts can increase ‘acceptance of personal limitations [which] may help the affected women to adjust psychologically faster and easier’.

Positive body image

One significant finding of this review was that women may experience positive perceptions of body image following mastectomy (Moreira and Canavarro 2010, Grogan and Mechan 2017). Some participants in these studies, expressed how body image was not their primary concern and that they were proud of the scars which showed they had survived breast cancer. This emphasised the importance for healthcare professionals of avoiding assumptions that are not based on evidence. Mastectomy is a challenging procedure and requires women to adapt to and accept post-surgical outcomes. Empowering them to embrace their ‘new’ body and be proud of their scars could increase the positive perception that the research shows is experienced by some women.

While women can experience ‘shock, isolation and a loss of control’ following mastectomy (Fallowfield and Jenkins 2015), having control over their appearance can improve perceptions of body image (Moreira and Canavarro 2010), safeguard against negative feelings, support adjustment and improve anxiety later in the cancer journey (Moreira et al 2009).

Despite evidence of positive perceptions of body image post-mastectomy, this review emphasises a greater frequency of negative perceptions, which suggests it is essential for nurses to discuss the two aspects with women who have had a mastectomy. In an exploration of women’s self-perception following mastectomy, Mącik et al (2012) described self-evaluation as ‘one of the personal structures which is affected by the change the most’. To support women to navigate their feelings and experiences post-mastectomy, it may be beneficial to offer information about and/or refer them for psychological support or interventions from nurse specialists, psychotherapists, or online and local support groups. A Cochrane review of decision aids for patients facing health treatment or screening decisions suggested women who accessed supportive tools felt ‘more knowledgeable, better informed and clearer about their values’ and subsequently participated more in decision-making (Stacey et al 2017).

Age-related perception

This literature review indicated that younger women had poorer perceptions of body image than older women, and subsequently had increased anxiety and worse body image in the short and long-term following mastectomy. A systematic review of the information needs of young women with breast cancer found they have a greater need for information as ‘body changes have greater negative impact on self-image’ in this population (Recio-Saucedo et al 2016). This may be because older women have better coping mechanisms than younger women, which equip them to manage changes to their body image more efficiently (Härtl et al 2010).

In practice, support should be tailored to specific age groups; for example, support aimed at younger women may be more beneficial because they are at higher risk of negative self-perception. Further research into coping strategies could also be valuable because younger women could be supported to manage the effects of mastectomy more effectively and consequently improve their functioning with regards to body image. Some younger women may also require information about and/or support with breastfeeding. Gorman et al (2009), who investigated breast cancer survivors’ experiences of breastfeeding in the US, found that 10 out of 11 participants were successful in initiating breastfeeding following unilateral mastectomy. The researchers concluded that postpartum support, including ‘lactation consultants trained to meet the unique challenges of breast cancer survivors, encouragement of spousal/partner support and peer support from other breast cancer survivors who have breastfed’, was essential.

Finally, this review identified that perceptions of body image change over time, so it is important for healthcare professionals to recognise this and to tailor support or referrals to the needs of individuals. Some women who do not have negative perceptions initially may develop them later, therefore interventions such as education and counselling might be more useful six or 12-months post-mastectomy rather than immediately after surgery. Overall, it is vital that support continues beyond the initial recovery stage (Härtl et al 2010).

Healthcare professionals such as CNSs must understand the different aspects of women’s perceptions of body image post-mastectomy and how these affect their well-being and quality of life. Support is available before and after mastectomy from organisations such as Macmillan Cancer Support (2021b), CRUK (2021) and Breast Cancer Now (2021), and nurses and other healthcare professionals can use this information to support their patients and/or refer them to these organisations for further support.

Limitations

One limitation in this literature review was that while the sample sizes in the identified studies ranged from four to 236 participants, most had small samples, which indicated reduced generalisability. Therefore, the findings should be considered with caution. However, the target population of the review was specific, which supports an in-depth understanding of the topic that can inform practice. Also, the findings from the study with the smallest sample size (Sheppard and Ely 2008) was supported by those of a later study with a larger sample size and rigorous data analysis (Härtl et al 2010).

Another limitation was the diverse sociodemographic of participants, with studies based in the UK, Portugal, Greece, Australia and Germany. Again, this suggests that applying the findings to a wider population should be considered with caution due to differences in population, culture, politics and gender roles, which may have influenced the external validity of the literature review. Conversely, using evidence from various geographical locations provides a comparison of similarities and differences in participants’ experiences.

Two of the studies – Grogan and Mechan (2017) and Moreira and Canavarro (2010) – used questionnaires. One strength of this method is that it encourages honest responses, thus increasing the reliability of the findings. However, there is also a risk of ‘social desirability’, whereby respondents provide socially acceptable rather than accurate answers, which occurs particularly with sensitive topics (Choy 2014). Respondents might also have interpreted the questions differently. In face-to-face interviews, greater attention can be paid to people’s points of view, which are sometimes simplified in questionnaire responses.

Finally, researcher bias can influence the validity of qualitative studies because researchers can project their own views onto data collection, analysis and findings (Mays and Pope 1995). This affects generalisability because any findings are not then representative of the population.

Conclusion

This literature review aimed to explore women’s perceptions of body image post-mastectomy without reconstruction. The findings demonstrated that women can experience a range of perceptions at various stages of their recovery. Undergoing a mastectomy can be detrimental to some women’s perceptions of their bodies and can negatively affect their well-being. However, healthcare professionals such as CNSs should avoid making general assumptions about how women might feel about their bodies. Interventions that can be provided by CNSs and other healthcare professionals include education about the potential negative perceptions women might experience and referral to counselling to discuss the potential effects on sexual relationships. Women can also be referred to psychotherapeutic services for support in navigating the feelings they may experience. Providing access to individualised care and long-term support may assist in improving women’s perceptions about their bodies and subsequently increase their well-being following mastectomy.

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