Study selection and characteristics
A total of 2168 studies were identified from the initial search, with seven added through reference review and searching of grey literature (Fig. 1). After de-duplication and initial screening, 135 full-text articles were assessed for eligibility with 68 included in the final review.
Of the 68 studies, 36 addressed issues related to body image [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64], 68 masculinity [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96], and 50 self-esteem [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50, 52, 53, 55,56,57,58,59, 61, 62, 64, 66, 68,69,70, 72, 73, 78, 79, 81, 84, 86, 88,89,90,91,92, 94, 96], with most studies containing data relating to multiple themes. Studies took place in a total of 12 different countries, spanning five continents (Europe, North and South America, Oceania, and Asia). The total number of participants included in this review was 1443. Of these, 314 were interviewed in focus groups, 869 in semi-structured interviews, and 260 in open interviews. Exact cohorts varied, with some studies only accepting participants at a particular point post-diagnosis, receiving a particular treatment modality, or stratified by clinical stage of cancer. Additionally, other groups were often also interviewed in conjunction, including health professionals, consumer advisors, and patients’ partners [62, 64, 69, 89]. The overall age range of participants was 26–89 in studies reporting this (Appendix Table 1).
The CASP tool assessment demonstrated a range of quality of studies, ranging from meeting 67% (6/9 ‘Yes’) of the CASP qualitative criteria to 100% (median 89% IQR 78–89%). Questions 6 (‘Has the relationship between the researcher and participants been adequately considered’) and 7 (‘Have ethical issues been taken into consideration’) were those most often not met by 85% and 44% of studies, respectively. This was due to a lack of evidence for ethical review of the studies and no reflexive methods in the analysis of data to ensure the researcher and participant relationship was reflected upon. The results of the assessment are summarised in Table 1.
Thematic analysis identified a total of 31 codes (Table 2) and 8 descriptive themes under the headings of ‘masculinity’, ‘body image’, and ‘self-esteem’. These descriptive themes were subsequently arranged under analytical themes representing the PCa trajectory of ‘Becoming a PCa Patient’ and ‘Becoming a PCa Survivor’, reflecting the unique challenges and threats to emotional wellbeing encountered immediately after diagnosis and treatment, and the strategies men used to come to terms with these, often later into survivorship. Masculinity-related concepts were most frequently coded, with body image the least. Figure 2 demonstrates the relationships between codes, descriptive themes, and analytical themes identified.
Becoming a prostate cancer patient
This first analytical theme generated from the review described the immediate changes men experienced to their masculinity, body image, and self-esteem, which were invariably negative. The themes under this were ‘threats to masculinity’, ‘changes to bodily function’, ‘changes to bodily treatment’, and ‘shame’. The second-order themes under this heading are demonstrated in Fig. 2.
This theme described men at the outset of their diagnosis, and was impacted the most by changes to sexual function. This negatively affected men’s sense of masculinity due to the preconceived ideals held that men should be able to function sexually in a natural, spontaneous, and unhindered way [30, 34, 48]. This change also affected their body image, as they realised their bodies now had reduced capabilities, further impacting men’s self-esteem. They lost confidence and withdrew from their former lives for fear of being found out as lesser men.
There were also new limitations men found in their lives—their bodies were weaker, and they had to limit their journeys outside due to fears of symptoms including incontinence or flushing [31, 37, 40, 41, 56]. Furthermore, this new limitation was not something they believed they deserved, with some describing themselves as infallible before their diagnosis, embodying the typical hegemonic male who does not seek healthcare or tell others about his problems [11, 35, 69, 81, 84, 85, 93, 98]. These men tried to hold onto these ideals even in the face of their illness, experiencing distress as they were unable to do so. They were faced with the choice to either hold onto their past lives, at the cost of their health, or accept their new masculinity.
This theme represents the conflict between retaining masculine ideals and accepting their new lives where this was no longer possible. This seemed to be held onto more at the beginning of their diagnosis, and those who strongly believed in concepts of hegemonic masculinity. Often men struggled to accommodate their illness, leaving them distressed, angry, and in some cases depressed.
Becoming a prostate cancer survivor
The second analytical theme identified described the way men eventually began to accommodate and accept their new lives. Most importantly, this included how men began to change and reshape the way they saw masculinity, to enable them to continue feeling masculine despite the changes brought on by their illness. The themes under this were ‘regaining sexual function’, ‘renegotiating relationships’, ‘regaining sexual function’, ‘re-affirming masculinity’, and ‘regaining confidence: becoming a mentor’.
A theme often brought up by these men was the concept of a trade-off. It was most often discussed in terms of loss of sexual functioning, where men considered it acceptable to lose their masculinity in this way as a necessary measure to preserve their health [11, 35, 37, 38, 42,43,44, 46, 48, 50, 52, 56,57,58,59, 65, 71, 72, 77,78,79, 88, 94, 95]. Through this reasoning, men accepted not only their loss of sexual functioning but also more general aspects of their changed lives. This also meant that men were less likely to feel the need to try and regain their sexual functioning with aids, or find evidence to prove that they were sexually active in other ways, which were other coping mechanism for their functional loss. Conversely, some stated they preferred to risk their health in order to preserve their sexual function [35, 48, 54, 62, 65, 75], showing that although some men were able to engage in trade-off, others held onto masculine ideals so strongly that even threat to life could not make them abandon these.
This theme also embodied wider changes men made to their lives, and thought processes, to enable them to continue to live happily, and avoid the distress caused by their altered life. This involved the re-affirming masculinity theme, where men re-asserted their embodiment of masculine concepts in other areas of their lives, and regaining confidence: becoming a mentor, where men, instead of shying away from discussing their illness with others, began to mentor other diagnosed men, act as a representative for men with PCa, and advocate for increased research. Although this mentorship theme was at odds with the masculine ideals of stoicism and not seeking healthcare, it agreed with the ideals of power, strength, and leadership. Realigning themselves with some masculine ideals and abandoning others was a key part of Becoming a PCa Survivor. This theme required men flexible with their definitions of masculinity, but ultimately enabled men to be happier with their new lives, as they realised masculinity could be achieved in different ways.
Masculinity concepts were present in all 68 papers [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96], and coded a total of 1311 times. Second-order masculinity themes tended to relate either to identifying threats to men’s constructions of their own masculinity, and the process of men realigning and redefining themselves so that they could continue to identify as men. These themes were threats to masculinity, renegotiating relationships, regaining sexual function, and re-affirming masculinity.
Threats to masculinity
A number of life changes presented threats to men’s masculinity. The most important of these was the inevitable change to sexual function and libido. Men described how procedures such as radical prostatectomy made them feel as if they had ‘lost a bit of [their] manhood’ , highlighting the belief that the prostate was an organ that differentiated men from women [32, 45]. Men compared radical prostatectomy to becoming ‘gelded’ [30, 48] or castrated , and were disturbed by the fact this procedure removed an organ they saw as vital [31, 35, 52, 97].
Changes to sexual functioning post-treatment was commented on often, being the most frequently coded code under the masculinity subheading. Men described themselves as ‘useless for sex’ , and were distressed by loss of libido as well as function [30, 31, 34, 37, 47, 48, 90]. Retaining sexual function was also so important to some men that they recounted choosing treatment depending on which offered the best potential for preservation of function , even if this reduced survival [35, 65, 75]. Multiple studies reported that men saw post-treatment erectile dysfunction as the most important factor they overcame [34, 54, 56, 89], with the shame of erectile dysfunction further compounded by incontinence disrupting their sexual relationships [55, 62, 80]. Decline in sexual function made men feel ‘not worthy’, less of, or unable to be a man compared to pre-treatment [30, 31, 33, 66, 77, 90].
For men receiving androgen deprivation therapy (ADT), side effects of treatment made them feel ‘like honorary women’ , or that they were ‘being turned into women’ [42, 46, 56]. Men described gaining ‘boobs’ [37, 59], demonstrating how men immediately saw gynaecomastia as a signifier of their feminine transition. Many also attributed emotional changes to ADT—crying more often [53, 80], becoming sentimental , and even wanting to bake more often .
The combination of these different factors made men feel that PCa had taken away their ability to be a man. Men described how PCa invalidated many of their ideals of who a man should be and what he should be able to do, representing a huge loss to their lives.
Partner relationships were frequently mentioned by men. Studies predominantly included heterosexual men, with only eight studies including gay or bisexual men [48, 55, 57, 62, 63, 73, 75, 80]. In men experiencing erectile dysfunction and loss of libido, the attitude of partners was a concern. Heterosexual men often posited their partners as uninterested in sex [59, 65], or admitted to not asking them how they felt about their changed sexual relationship [58, 78]. This enabled men to play down the effects of erectile dysfunction on their lives. Gay men faced more uncertainty in their relationships, describing the fact they could compare themselves with their partners, making them feel inadequate and embarrassed , and in some cases leading to the breakdown of relationships [62, 63].
Partners—almost always wives in these studies—played a key role in supporting men emotionally [37, 38, 44, 52]. They helped men both deal with the consequences of cancer , and encouraged them to seek out healthcare in the form of ‘nagging’ or ‘worrying’ [35, 37, 39, 42]. However, for single men, the effects of erectile dysfunction made them less likely to seek out new relationships [34, 38, 48, 80], end current ones , or to hide their diagnosis from romantic interests .
Relationships with healthcare professionals were often a new domain for men who were previously reluctant to seek out healthcare. Men found it difficult to discuss intimate issues like loss of sexual function with their doctors. This was due to these issues not being brought up by health professionals [62, 77, 78], and their own reluctance to reveal this loss of masculinity [55, 81]. Men described incompetence of surgeons as a cause for their erectile dysfunction [48, 67], as well as doctors who they believed had not conducted the appropriate tests , or failed to recognise their cancers earlier [38, 66]. Men also described inadequate information provided by physicians, particularly about sexual side effects, compounding their feelings that the healthcare received was somewhat to blame for their resulting loss of masculinity [11, 38, 42, 54, 61, 67, 72, 77, 78]. There was often also distress by their physician only being able to give limited advice on which treatment modality to choose, with this decision ultimately falling to themselves, and they therefore dwell on whether the ‘right’ decision was made [39, 60, 83].
The final relationship domain change was with other men. Men recounted that their lack of confidence due to physical changes, or simply reduced desire to be around others, meant that they withdrew from their social lives [36, 37, 50, 61, 66, 80]. There was often also no disclosure of their diagnosis to other men, instead keeping this to their partners .
Regaining sexual function
Use of sexual aids was mentioned by many groups [11, 33, 35, 41, 48, 55, 58, 63, 65]. Most men stopped using any sexual aids as they tended not to work [11, 65, 78, 89], or did not give men the spontaneous and natural erections that they desired, making them feel artificial and unnatural [30, 33, 34, 48, 57, 58, 70, 75, 90]. Furthermore, many described pain and discomfort associated with these devices [34, 58], making their use intolerable [63, 65]. However, for some, the use of sexual aids was acceptable, expressing increased confidence due to the fact they were now able to continue with their sexual lives [52, 62, 64, 73, 75].
For those not wanting to use sexual aids, but still desiring to maintain a ‘sex’ life (both for the benefit of their partners and to retain their sense of masculinity), sex was redefined as acts not requiring an erection or penetration. This was in contrast to the view many men had pre-diagnosis that penetrative sex was an important component of their masculinity . Some began to include intimate acts such as hugging and kissing in their identity of being sexually active [38, 52, 58, 59, 62, 64, 65, 73, 90]. Others engaged in sexual activity not requiring penetration [33, 43, 48, 58, 70, 78]. Some men also maintained that being able to have sex without an erection was proof of being a superior lover, or resulted in them experiencing no loss of masculinity [65, 70, 94].
Men engaged in a number of discourses to re-affirm their masculinity and normalise the changes caused by their PCa diagnosis. Control was a key feature of men re-affirming their masculinity. Men identified different ways in which they tried to re-exert control over their lives, making up for that which they had lost due to their diagnosis and treatment. Men described fear of their unknown futures [11, 32, 38, 44, 47, 80], requiring them to do something to try and regain power over their life trajectory. Many did this by gathering information about their disease from the Internet, book, and other men [31, 36, 38, 42, 43, 46, 50, 55, 56, 66,67,68, 70, 72, 74, 75, 96], as well as researching both current and future treatments [39, 44, 48, 53, 55, 60, 68, 75, 86]. Others looked for answers as to why they had the disease, making note of patterns of cancer in their families [36, 66]. PSA levels were a particular focus to some [36, 60], with worries that treatments may ‘mask’ their PSA score , which was seen as vital information to help them feel in control of their disease.
Another way men regained control was by ensuring families and spouses were protected from hardship, not only physically through funeral and financial arrangements but also emotionally, by sharing limited information about their condition and emotions [37, 53, 54, 92].
Taking a newfound interest in preserving their health also enabled men to feel as if they had more control over their disease, despite these behaviours being considered feminine by some . Men described increased healthcare seeking [50, 79, 81, 84, 85], improved health behaviours, physical activity, diet [33, 37, 38, 50, 53, 76, 85, 86, 96], and paying increased attention to bodily changes [44, 58, 73, 84].
Humour has been previously identified as a feature of male discussion about cancer, where it is used to draw attention away from sensitive themes , and maintain masculine norms of stoicism and indifference to threats to health . Humour was used directly by men in their interviews [42, 47, 62, 64, 72], and spoken about how they engaged with others [11, 35, 42, 48, 59, 67, 72, 87]. Joking about death and gallows humour was commonly mentioned, highlighting that playing down the emotional burden of their disease was another way to embody the masculine ideals these men subscribed to [38, 42, 67, 83]. Humour also presented a strategy to help men minimise the effects their PCa had on their sense of masculinity , particularly in situations such as focus groups and support groups, where they were encouraged to talk in detail about their problems in front of other men [60, 87].
Some men also justified changes to their masculinity by accepting them as consequences of getting older, particularly through normalisation of sexual and urinary symptoms [11, 33, 35, 42,43,44, 48, 52, 55, 57, 58, 61, 64, 70, 75, 77, 79, 96]. The increased vulnerability felt was also accepted as a consequence of older age [33, 37, 38, 56, 62], allowing them to reason that changes caused by PCa would have happened regardless. Conversely, some men emphasised the importance of believing in their own youth and ‘thinking young’ to delay the effects of both their cancer and general old age [63, 69], embodying the hegemonic concept that cancer was a disease men must fight against. For other men, confronting symptoms of PCa symbolised a premature ageing process, which distressed this group [41, 63, 71, 72, 79].
The importance of mindset was not only seen in relation to ‘thinking young’. Many appreciated a positive mindset was crucial to ensure their wellbeing. This embodied both thinking positively [40, 44, 46, 47, 50, 53, 69,70,71,72,73, 82, 88, 92, 96], as well as positioning cancer as a disease that should be ‘fought’ or ‘beaten’ [11, 59, 79], again allowing them to assume a dominant masculine role in the face of disease. Men also described previous experiences that gave them the ability to ‘handle’ their cancer diagnosis [11, 48, 69], enabling men to re-assert their strength and show that they had experienced worse than the challenges presented by PCa.
Another strategy employed by men to re-assert their masculinity was emphasising that their PCa had minimal effect on their lives, and by extension their masculinity. Men who lacked symptoms in particular were able to do this, using the lack of physical effects of disease as justification for why they should not be affected psychologically [11, 44, 65, 66, 69]. Men also described the concept of dying with PCa, rather than of it, as a reason for it not to affect them . Others asserted it was simply something in life to be dealt with, despite negative feelings they may have [33, 36, 38, 41, 42, 48, 53, 70,71,72, 92]. This narrative was also used by those experiencing sexual dysfunction—by emphasising the unimportance of sex to them or their partners, they could downplay the effect this had on their lives [34, 37, 43, 65, 71, 75, 79]. Men identified that suppressing emotions in this way and downplaying the effect PCa had was a masculine trait [35, 38, 45, 78, 80, 81, 93].
The final strategy utilised was acceptance. That changes experienced in physical, sexual, and general health did not change the fact that they still identified as men. Men described that they were ‘still a man’ [11, 32, 33, 47, 48, 59, 79], despite the fact that loss of sexual function was seen as a key part of masculinity [34, 56].
A total number of 107 body image-related codes were inputted, across 36 of the eligible studies [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64]. Men’s body image was affected by two main concepts: the changes in function they experienced due to their diagnosis and treatment, and the changes to how others treated their bodies. Therefore, the second-order codes under this heading were changes to bodily function and changes to bodily treatment.
Changes to bodily function
A wide range of changes to their bodies were described, with subsequent new limitations in their activities secondary to these. Physical changes such as fatigue [31, 37, 38, 49, 56, 61], urinary incontinence [31, 40, 41], and changes to appearance [37, 38, 49, 61] resulted in men perceiving their bodies as deficient [30, 37, 44, 45, 49, 50, 52, 62] and a source of shame [31, 41]. Even those experiencing limited functional changes felt that their body was now less than whole due to the removal of their prostate [32, 50, 52, 54, 62], or were distressed by extensive scarring [31, 40, 57]. Those undergoing ADT in particular described physical changes which meant their bodies were no longer their own [38, 59]. Body image was a concern not just for men who saw changes in their appearance but also those who experienced loss of function that they inherently associated with the capabilities of their bodies.
Physical discomfort became a part of men’s lives in a way they had not experienced before. Men described pain from treatments [11, 34, 36, 42, 43, 61] as well as the cancer itself [30, 36, 38, 42, 46, 51, 53, 61, 63, 64], creating the sense that men could no longer trust their bodies to function without some level of discomfort.
Changes to bodily treatment
A sense of loss of ownership over their bodies was common, as men began to engage with healthcare services more frequently. Letting others touch and handle their bodies for medical and surgical procedures created a new sense of vulnerability and shame [11, 30, 32, 35, 45, 60, 78]. Men also described seeing their bodies as old due to changes that were associated with premature ageing [33, 37, 38, 41, 42, 62, 72, 79]. Some men described in particular their experiences with catheters. This visible sign of illness, whilst accepted and accommodated for by some [11, 69], severely limited the lives of others due to loss of confidence and shame [30, 36, 41].
Self-esteem concepts were coded 186 times, across 50 eligible studies [11, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50, 52, 53, 55,56,57,58,59, 61, 62, 64, 66, 68,69,70, 72, 73, 78, 79, 81, 84, 86, 88,89,90,91,92, 94, 96]. Men described situations in which they now lacked confidence and factors that caused them to feel new shame. However, some found outlets, particularly through support groups and advocacy work, allowing them to regain lost confidence. The second-order codes under this heading were shame and regaining confidence: becoming a mentor. Experiencing depression was a distinct concept identified, although strongly linked to self-esteem and shame, which was mentioned by many as an effect of their diagnosis [44, 48, 50,51,52, 58, 61,62,63,64, 72, 73, 78, 80, 83, 94].
Shame was experienced in a variety of ways and settings. Their diagnosis itself was described as creating discomfort, with some feeling they lacked a sick role or recognition when they went into hospital , when other men did not believe they were unwell [37, 69], and particularly when others compared prostate to breast cancer . This made men ashamed to admit their illness to others as they did not fit the traditional ‘sick’ model. Worthlessness due to being unable to work was also experienced, taking away the dominant masculine role they were used to [37, 41, 62].
Acute feelings of shame related to diagnosis was common, particularly from symptoms experienced, sometimes causing men to retreat from social situations or avoid leaving their house [30, 31, 38, 43, 59, 70, 80]. There was also a profound embarrassment caused by their inability to sexually perform in the same way as before [30, 33, 34, 41, 43, 45, 55, 62, 73]. This affected their relationships with their partners, and also caused a wider feeling of shame that meant men withdrew from all aspects of their social lives, feeling unable to talk about their experiences with others [11, 35, 38, 45, 52, 68, 70, 78, 79, 88, 90, 92, 94], including their own doctors [31, 73, 81]. This theme linked to ‘changes to bodily treatment’, as some diagnostic procedures contributed to men’s feelings of shame: rectal examinations were specifically identified by men as an embarrassing experience [35, 45, 81, 84]. Some men saw this as adjacent to homosexuality , creating a sense of shame associated with infringement of the masculine ideals they held.
A newfound vulnerability was also seen, due to physical changes [30,31,32,33,34, 38, 39, 52, 70], the loss of their social lives [30, 38, 48, 70], and the uncertainty surrounding the course of their illness [36, 44, 53, 58, 61, 66, 72]. Several also described an increased reliance on others [11, 39, 41], which some had previously looked down upon [35, 38, 66]. Although these men did not explicitly mention shame, their vulnerability was something they tried to hide, and was seen as a negative trait, again tying into the invalidation of their sense of masculinity.
Regaining confidence: becoming a mentor
Regaining confidence was described by some, mainly through PCa support groups. Five studies included instances where men either acted as spokespeople, drawing attention to PCa in their local communities [47, 53, 59, 72], or as a mentor for others within their support groups . These men described their satisfaction and newfound positivity when they successfully convinced others to look after their health by undergoing investigations and attending screening: one man described that hearing others take his advice gave him ‘such a lift’ .