More than 47 500 men in the UK are diagnosed with prostate cancer every year (Prostate Cancer UK, 2019). Prostate cancer is formed by uncontrolled division of cells within the prostate gland that produces swelling, which is known as adenocarcinoma (Persad et al. 2010). Risk factors for prostate cancer include age, ethnicity, hereditary/genes and lifestyle (Persad et al, 2010).
Treatment for prostate cancer may vary depending on personal preferences and clinical factors. Clinical factors include size of tumour, grading of the tumour on both the magnetic resonance imaging (MRI) scan and biopsies, and risk of spread (National Institute for Health and Care Excellence (NICE), 2019). Men with prostate cancer that is still contained within the prostate capsule are offered three treatment options: radical prostatectomy, active surveillance, and radiotherapy. The research presented here focuses on prostatectomy as sole treatment option. The aim was to explore whether known side-effects of prostatectomy impact on body image, and their role in men's treatment decision and post-treatment regret.
Radical prostatectomy
Prostatectomy involves removing the whole prostate capsule using a surgical procedure (laparoscopy (keyhole), robotic-assisted or open surgery). Irrespective of the surgical approach used, post-treatment side-effects for surgery are similar, and these include urinary incontinence and erectile dysfunction (NICE, 2019). It has been documented in the literature how incontinence and erectile dysfunction after surgery affect quality of life (Levinson et al, 2011; Christie et al, 2015), however, one specific element with limited research is the impact that prostatectomy has on men's body image.
What is body image?
Fobair et al (2006) defined body image as a mental picture of one's body, and an attitude towards physical self, state of health, wholeness, normal function and sexuality. White (2000) argued that in oncology populations, alteration to particularly symbolic parts of the body may lead to a greater disturbance in body image. This is directly related to the penis, which can be identified as a bodily signifier and as providing a distinction from femininity (Oliffe, 2005). An alteration in the form and function of this organ may have a significant impact on one's body image and concept of self (Hopwood, 2001; Cash, 2004; Fobair et al, 2006).
Body image and prostatectomy
Prostate cancer treatments can have side-effects such sexual dysfunction, erectile dysfunction, bowel and urinary incontinence (Manne et al, 2010). These side-effects have been found to affect men's confidence, sexuality and their self-esteem (Manne et al. 2010), thereby affecting their body image (Hopwood, 2001). Regardless of the surgical approach used to remove the prostate gland, 5% to 48% of men develop urinary incontinence caused by damage to the urinary sphincter during the removal of the prostate gland (Adamakis et al, 2013). Only 27% of men return to their baseline erectile function (Levinson et al, 2011) and the majority fail to have sufficient erection for penetrative sex due to intraoperative trauma on the sexual nerves, venous leakage and arterial insufficiency (Tal et al, 2009; Salonia et al. 2012).
More visibly, penile shortening and penile deformity due to prostatectomy surgery can result in body image issues (Benson et al, 2009). Studies using self-administered questionnaires have found that men who have had a prostatectomy reported perceived penile shortening (Carlsson et al, 2012; Parekh et al, 2013; Frey et al, 2014). However, it was not reported in these studies whether the perceived penile shortening affected their body image.
Nelson et al. (2010) used self-reported questionnaires with 183 men, before surgery and up to 24 months after surgery, to determine whether ‘sexual bother’ increases following prostatectomy. Diminished erection following surgery was associated with shame and embarrassment, and reduction of happiness. Using self-report questionnaires in this study failed to capture the lived experiences of men who experience sexual problems following surgery.
In a qualitative study by Wellam et al (2010) loss of penile length was reported as unimportant, but men reported fear of failing to perform sexually, which affected their masculinity. Although this was a qualitative study, it had a focused outcome on penile shortening, which is only one of the problems that may be experienced by men after prostatectomy. Dismissing penile shortening as an insignificant problem inhibits exploration of the wider effects that stems from perceived penile reduction and its impact on body image.
Hedestig et al (2005) reported body image issues that affected men after surgery for prostate cancer, but how prior knowledge of body image changes might have affected the patient's treatment choices, and whether the changes experienced resulted in post treatment regret, have yet to be investigated.
Body image, decision-making and post-treatment regret
Treatment decision-making for prostate cancer, with the curative element and convenience of treatment, has been reported to influence men's choice of surgery (Anandadas et al, 2011). However, the possible role of body image-related issues in men's decision-making about treatment has not yet been examined. The present study sought to explore whether known side-effects impact on body image and influenced men's treatment decision before choosing surgery as treatment for prostate cancer.
Post-treatment regret associated with treatment choices has been linked to uncertainty of disease progression (O'Connor et al, 2001; Gwede et al, 2005). Unfavourable outcomes may lead one to believe that another decision might have been preferable (Christie et al, 2015). Regret following prostatectomy has been associated with poor quality of life due to incontinence and erectile dysfunction (Lin, 2011; Lee et al, 2015).
At the time of writing, it is not known whether treatment decision is influenced by possible body image-related issues following surgical removal of the prostate for prostate cancer.
Methodology and aims
A qualitative descriptive method was used to answer the research question and meet the aims and objectives of the study. The research question set was: What is the role of body image in treatment decision-making and post-treatment regret in men following prostatectomy for localised prostate cancer?
Aims and objective
Ethics
Ethical approval was sought from the South West-Central Bristol Research Ethics Committee (REC: ethics ID 246944). Written consent was obtained before interviews. Provided in the patient information sheet were the contact details of support services that participants could contact if they were distressed after their interview.
Research team and reflectivity
The first author (CS) undertook the semi-structured interviews. CS is a urology research nurse with more than 5 years of working with men with prostate cancer who were the population of interest in this project. The research was undertaken as partial fulfilment for a Masters of Research (MRes) degree. The second author (SH) is a health psychologist and researcher. Both researchers are female. SH has extensive experience in undertaking qualitative research, and CS undertook qualitative training as part of her MRes.
Methods
Participants
Invitation letters were sent to 38 men who had had prostatectomy between November 2014 and November 2017 at one hospital in the West of England and who satisfied the study inclusion criteria (Box 1). This represented the total population available within the time frame. Fourteen men returned reply slips and were invited for interviews and nine men were subsequently available for interview. Table 1 provides the demographic information of the participants. All participants were heterosexual and sexually active prior to their prostatectomy.
| Pseudonym | Age | Marital status | Time from surgery (months) | Ethnicity |
|---|---|---|---|---|
| Avi | 63 | Married | 38 | Asian |
| Mike | 59 | Married | 38 | White British |
| Rob | 71 | Married | 38 | White British |
| Tom | 76 | Married | 48 | White British |
| Ross | 76 | Living with partner | 50 | White British |
| Bill | 57 | Married | 25 | White British |
| Alex | 71 | Married | 23 | White British |
| Ken | 64 | Married | 23 | White British |
| Eddy | 74 | Married | 21 | White British |
Study design
Semi-structured interviews were conducted with nine men. Interviews were undertaken either face to face, or over the telephone (n=1) where a physical meeting could not be arranged with the participant. Where data were collected face to face; some were undertaken in the participant's home (n=1), while others were undertaken in a clinic setting (n=7). The location was chosen by the participant, and only the participant and interviewer were present, with field notes being taken to supplement audio recording.
An interview guide developed from previous prostate cancer studies (Haliloglu et al, 2007; Harrington et al, 2009) was followed during the interviews. It was piloted with members of a public patient involvement panel. Each participant was interviewed once and interviews were audio recorded and transcribed verbatim. All those who volunteered were interviewed, there were no new codes identified through ongoing analysis after nine interviews.
Analysis
Transcriptions were outsourced to a university-accredited transcriber. Once received from the transcriber the transcriptions were read while the researcher was listening to the recording to ensure accuracy in the written record. Once transcriptions were approved as a true record, the researcher read and re-read them while listening to the recording to enable immersion in the data. Interviews were analysed thematically with the identification of commonalities, shared meaning and shared experiences across the data set (Braun and Clarke, 2006). Analysis followed the six steps outlined by Braun and Clarke (2006).
At steps 1-5 analysis was reviewed by the second author. Any disagreements about the codes and themes were discussed and fed into the next stage of the analysis. CS's academic supervisor reviewed and undertook theme checking. Mindmaps based on the data were created to support the analytic process, as suggested by Braun and Clarke (2006), during the deriving of the themes.
The consolidated criteria for reporting qualitative research (COREQ) 32-item checklist (Tong et al, 2007) were used to ensure trustworthiness in the findings.
Results
The average duration of interviews was 28 minutes (ranging from 16 to 43 minutes). Four main themes emerged from this study: need to prolong life, post-surgery effects on body image, loss of function and self, and coping strategies.
Theme 1: The need to prolong life
During the interviews it became clear that body image did not play any role in treatment decision. However, the need to prolong life and survive the cancer was voiced as a major influence on treatment choice. Fear of disease progression was expressed and surgery was seen to be the only way to remove this fear, cure cancer and prolong life:
‘I didn't want the risk of anything coming back. I was scared; I was not a happy bunny. I just wanted this all over and done with, so I decided “just get it out”.’
‘No, because you have sex or you die. Do you understand me?’
Surgery was viewed as a treatment that could prolong life compared with other prostate cancer treatments, in light of their friends' and family's experiences of these:
‘I have a friend who's dying of prostate cancer at present and I've been aware of that for the last six and a half years. He's done very well, but he is now in the later stages and it's pretty … he's got bone metastases so he's in a fairly painful position. So I was very well aware of what the implications were if one left it. So my decision, which was my own decision, was “I'll have it out”.’
Men felt that having surgery would remove cancer therefore removing the possibility of death. Unlike other options, such as radiotherapy and hormones, surgery was considered as a curative treatment with minimum side-effects according to the experiences of friends.
Theme 2: Post-surgery side-effects and impact on body image
Although body image did not explicitly play a role in treatment decision-making, body image problems—defined as a mental picture of one's body and an attitude about the physical self (Fobair et al, 2006)—were evident in negative post-treatment experiences such as incontinence and sexual problems.
Incontinence
In some cases, the interviewee had unrealistic expectations about the amount of time that would be required to regain bladder control:
‘I don't know I … I was frustrated with myself because things weren't going as fast as I … so it was [with] myself but worried as well, really. Worried that perhaps this is going to go on for longer than I thought. Because I had it in my head, within a week … but of course it was about a month by the time … it must have been about a month/6 weeks I suppose before I was finished using the pads in the pants.’
Although incontinence was a problem, one man focused on the alternative of still having cancer and the risk of death, so he considered incontinence and the wearing of a pad a small price to pay for life:
‘No, because my main concern was longevity and life. If you're unfortunate enough to have to wear a pad for the rest of your life so be it, but it's better to be alive wearing a pad if you need to rather than be dead in the grave.’
Being incontinent as a man was expressed unequivocally as negative:
‘I was very conscious of it [the pad], particularly going to a gents' toilet, I used to go into the cubicles.’
Sexual problems
Altered erectile function left one man feeling inadequate because he felt that he was now unable to fulfil his duty as a husband in the couple's sexual relationship:
‘If my wife, maybe, felt a bit like she wanted sex, I can't give it to her in a response that we would have had before. So I know … she loves me dearly, but from a sexual point of view she can't get what she wants anymore if she wanted it. Because I wouldn't be readily there for her … It's just that I haven't got the tools to finish the job off, so to speak.’
Theme 3: Loss of function and self
Regardless of men reporting no treatment regret, there was an overwhelming sense of loss of function and loss of self. Loss of erection was discussed by all participants during their interviews. Three men talked about a trade-off between having an erection and being alive.
‘I'm fine, I'm just glad to be here. That's the way I have to look at it. I'm here, I'm alive, I can go out and ride a motorbike, I can do everything I want to do. I can still work and I'm happy to just be here.’
In the interviews, two men expressed how unhappy they felt with their altered sense of self and their manhood. Erections played a big role in self-identification for Ken and Eddy:
‘That's part of being a man. It must be like a woman if she's got to have her breast removed. Very similar thing I would imagine. You've got a woman with a lovely pair of breasts and maybe she enjoys showing them off, then all of a sudden take them away and how's she going to feel. She can't show … she might enjoy showing her breasts off a little bit and now she hasn't got any breasts to show off. So her confidence will go.’
Theme 4: Coping strategies
Various ways of coping such as re-evaluation of life, exercises, downward social comparison and age were talked about.
Re-evaluating what was important to them and their families and being alive was enough to enable them to cope with erectile dysfunction:
‘I can't get an erection … Put it this way, if I hadn't had had that operation I could have been dead …’
Downward social comparison was used as a way of coping with their situation:
‘We can't have penetrative sex so what we can do … also grateful for what we have got now because my brother … he couldn't have nerve-sparing surgery, so I know what the option is.’
Distraction was a way that one man and his wife managed to cope with erectile dysfunction:
‘Me more so and I actually take part in various events as well, like running and obstacle races, that sort of thing … that's something we do together, which is nice, and we do like going away to various motor sport events, music concerts, that sort of thing, so we have quite an active life … I think if we were sat here all the time then perhaps it might be more of a thing that we'd have to have a coping mechanism than not.’
Men's perception of age and what they considered to be normal body changes helped them cope with erectile dysfunction. In effect, they used their present age to justify erectile dysfunction:
‘Again, I'm 72 and so it's not something that rules my life and never has.’
‘Not being able to have sex is not good … it's not ideal, but I'm 57 …’
Discussion
The aim of this research was to explore the role of body image in treatment decision-making and post-treatment regret following prostatectomy for localised prostate cancer.
Men in this study reported that body image, as defined by Fobair et al (2006), did not influence the decision-making process, but removing the cancer to prolong life was the priority despite the side-effects caused by surgery. This was consistent with the findings by Hopfgarten et al (2006) and Seigel et al (2001), who reported the willingness of men to accept long-term erectile dysfunction if there was any chance of prolonging life. Further investigation is required to understand the pattern of acceptable side-effects of treatment or disease progression for men who choose active surveillance or radiotherapy, and if any biological factors, such as age or ethnicity, affect treatment choice and the relationship to body image and regret.
Findings of the current study support those of Haliloglu et al (2007) and Harrington et al (2009), in which men reported that loss of erection resulted in alteration to self-identification, and therefore body image.
Downward comparison was reported as being used as a coping strategy in the current study. Comparing oneself with a less fortunate other has been found to fulfil emotional needs by increasing self-esteem in cancer patients (Taylor and Lobel, 1989; Carmack Taylor et al, 2007). This strategy has been discussed in breast and general cancer studies before, but appears to be new to a prostate cohort. These benefits seem to be especially pronounced for people who are low in self-esteem and who are strongly disposed to make social comparisons (Carmack Taylor et al, 2007). This social reframing may also promote positive psychological change (also called post-traumatic growth), which may be directly related to the physical trauma of prostate cancer, but could also be enhanced by social support in the form of family and friends, or through greater spirituality (Walsh et al, 2018).
A direct question about post-treatment regret was asked during interviews. All participants reported that, given the same situation, they would have surgery again even with the sexual/urinary problems they were experiencing. This contradicts the findings from previous studies in men following prostate cancer surgery (Lin, 2011; Morris et al, 2015), where post-treatment regret was attributed to sexual/urinary problems following prostatectomy.
A note of caution regarding the generalisability of this small sample should be made. The sample of nine men was almost all white except for one man who was Asian, and this might have influenced the results. It is known that ethnicity is a risk factor for prostate cancer, with Afro-Caribbean men disproportionately represented. A purposeful sample of men with black and Asian minority backgrounds might be valuable in order to understand their perspective on issues around body image following prostate cancer treatments. The age of men interviewed men ranged from 57 to 76 years old. Most men who experience prostate cancer under the age of 50 are of black origin (Hosain et al, 2012), and further work is needed to unpick how ethnicity and age may interact with treatment choice and regret, and also to assess the relationship between ethnicity and age with changes in body image. However, the sample was representative of men who have prostate cancer as reported in other published studies and suggests that, although not generalisable, the findings from this study could be compared with the wider UK prostate cancer patient cohort represented in research.
Limitations
There are some limitations to this study, one being that all participants had received their treatment from one NHS hospital, and therefore had similar service experiences. Their overall hospital experience may have influenced the way they felt about the decision they had made, which could be associated with the lack of regret about treatment decision. Although there are treatment guidelines in place, it would be optimal to investigate experiences across treatment providers to understand whether this is a factor in the subsequent opinions and feelings of the men being treated. It would also be beneficial to investigate the post-treatment support provided by different primary and secondary healthcare services, and which of these have been accessed by participants.
Conclusion
Body image was not explicitly identified by men as a factor that was considered during treatment decision-making. The interviews revealed that treatment decision-making was influenced by family and friends' experience of cancer in general including prostate cancer, and the quest to seek a cure and prolongation of life. Participants did not readily identify with body image as an explanatory point of reference, but reported a strong sense of personal change in sexual/bladder function and sense of loss of self within these changes, which are factors of body image as defined by Fobair et al (2006). Prostatectomy leaves very little in terms of visible scars but the interviews revealed that invisible body image changes negatively affected men's self-perception. Men developed coping strategies that enabled them to cope with erectile dysfunction following surgery and included re-evaluating what was important in their lives.