The Impact of Prostate Cancer on Mens Everyday Life

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Original article

The impact of prostate cancer on men’s everyday life

L. APPLETON, MPH, BSC, RGN, RM, RHV, RESEARCH NURSE, The Clatterbridge Cancer Centre NHS Foundation Trust, Wirral, D. WYATT, RN, DPSN, CERT ED FOR NURSE TEACHERS, BA (HONS) HEALTH, ENB 236 ONCOLOGY NURSING, MSC NURSING, SENIOR LECTURER/MACMILLAN LECTURER, University of Chester/Clatterbridge Cancer Centre, Faculty of Health and Social Care, University of Chester, Chester, E. PERKINS, PROFESSOR, WILLIAM RATHBONE VI CHAIR OF COMMUNITY NURSING RESEARCH, DIRECTOR, Health and Community Care Research Unit, Institute of Psychology, Health and Society, University of Liverpool, Liverpool, C. PARKER, REGISTERED NURSE, DIP HE, BA (HONS), UROLOGY CANCER NURSE SPECIALIST, Urology, Aintree University Hospital, Liverpool, J. CRANE, MA, PGCHE, RGN, HEAD OF DIRECTORATE OF NURSING, School of Health Sciences, University of Liverpool, Liverpool, A. JONES, MSC PALLIATIVE CARE, BSC CANCER NURSING, RGN, HEAD OF CLINICAL GOVERN- ANCE, CWP NHS Trust, Chester, L. MOORHEAD, CQSW, MA MEDICAL ETHICS, MANAGER OF SOCIAL WORK & COUNSELLING DEPT, Hospice of the Good Shepherd, Chester, V. BROWN, RGN, CLINICAL SERVICES MANAGER, Hospice of the Good Shepherd, Chester, C. WALL, MPHIL, PHD, RN, SENIOR LECTURER IN NURSING, Faculty of Education Health and Community, Liverpool John Moores University, Liverpool, & M. PAGETT, BSC (HONS) RADIOTHERAPY, PRE-TREATMENT RADIOGRAPHER, The Clatterbridge Cancer Centre NHS Foundation Trust, Wirral, UK

APPLETON L., WYATT D., PERKINS E., PARKER C., CRANE J., JONES A., MOORHEAD L., BROWN V., WALL C. & PAGETT M. (2015) European Journal of Cancer Care 24, 71–84 The impact of prostate cancer on men’s everyday life

Prostate cancer impacts on the daily lives of men, particularly their physical and emotional health, relationships and social life. This paper highlights how men cope with disease and treatment and the strategies they employ to manage their diagnosis alongside daily life. Twenty-seven men were interviewed at different stages in their disease pathway: nine men prior to radiotherapy, eight men at 6–8 months post radiotherapy and 10 men at 12–18 months post radiotherapy. A grounded theory approach was used to collect and analyse the data. Regardless of the point at which they were interviewed four areas emerged as important to the men: the pathway to diagnosis; the diagnosis; the impact of prostate cancer and its treatment on daily life; and living with prostate cancer. Prostate cancer was diagnosed using the prostate-speciﬁc antigen (PSA) test, rectal examination and biopsy. Many men did not understand the consequences of a high PSA reading before they undertook the test. Painful investigative biopsies were viewed as the worst part of the disease experience. Radiotherapy was considered less invasive than other treatments, although preparatory regimes were associated with stress and inconvenience. Men used various strategies to deal with treatment-induced threats to their masculinity in the long term.

Keywords: prostate cancer, radiotherapy, qualitative research, masculinity, experiences.

BACKGROUND years. It is the most commonly diagnosed cancer in men in the UK, accounting for almost one in four of all new Prostate cancer is a signiﬁcant cause of morbidity and male cancers diagnosed (Wilt & Thompson 2006; Cancer mortality in men, especially in those over the age of 75 Research UK 2013). Nearly 42 000 new cases were diagnosed in the UK in 2010 (Cancer Research UK 2013), as Correspondence address: Lynda Appleton, The Clatterbridge Cancer Centre NHS Foundation Trust, Clatterbridge Road, Bebington, Wirral compared with over 35 500 in 2004 (Westlake & Cooper CH63 4JY, UK (e-mail: [email protected]). 2009). More than 10 000 men die annually from the Accepted 29 July 2014 disease (Kelsey et al. 2004; Department of Health 2006; DOI: 10.1111/ecc.12233 Cancer Research UK 2013). Improvements in detection European Journal of Cancer Care, 2015, 24, 71–84 methods and an increase in survival rates has inevitably

resulted in more patients being treated for and living given by the consultant and the experience of other with prostate cancer, resulting in a significant impact on patients has a significant influence on decision-making health service provision. Since the introduction of the (Sinfield et al. 2009; Ihrig et al. 2011). National Health Service (NHS) Cancer Plan in 2000 Quality of life measures have often been used to evaluate (Department of Health 2000), there have been various the impact of treatment on men’s health and well-being initiatives to improve prostate cancer services in the UK (Penson et al. 2003). A quantitative longitudinal study (NHS Executive 2000; NICE 2002; NICE 2008; Burford found that radiotherapy had a deleterious effect on global et al. 2010; Department of Health 2011). However, there is QoL (McCaughan et al. 2013). The study of 149 men dem- no population-based national screening programme for onstrated that QoL for all participating men declined in the prostate cancer in the UK and there is considerable debate first 4–6 weeks of treatment. There were improvements at regarding the reliability of prostate-specific antigen (PSA) the 6 and 12 months time points, yet a minority of men test. In the absence of a screening programme, the current reported experiencing severe urinary and bowel symptoms focus is to ‘give clear and balanced information to asymp- 1 year post radiotherapy treatment. However, it should be tomatic men who ask about testing for prostate cancer’ (p. noted that these men began the study with more severe 5, Burford et al. 2009). A call for clear information is wel- symptoms before treatment. It is clear that men experience comed given that earlier studies have indicated that men variations in QoL over time and those experiences are felt under-informed prior to undergoing PSA testing shaped by the type of treatment they receive. A US study by (Slevin et al. 1999; Chapple & Ziebland 2002; Dube et al. Sanda et al. (2008) measured QoL among men before and 2005) and is especially significant when one considers that after radical prostatectomy, brachytherapy and external- an elevated PSA is regarded as a turning point for men beam radiotherapy. They found that treatment-related QoL (Kazer et al. 2011). was significantly associated with satisfaction levels among The optimal treatment for prostate cancer is not known men and their spouses/partners, with distressing symp- (Lin et al. 2009). Decisions regarding treatment modality toms leading to reduced satisfaction. The authors acknowl- are dependent upon the grade (histological grade/Gleason edged that lack of sample randomisation prohibited the score), stage and PSA result; and take into account life comparison of treatment outcomes and the study did not expectancy, co-morbidities, quality of life (QoL) and extend beyond 2 years when further QoL changes could be patient preference (Wilt & Thompson 2006; NICE 2008). expected. However, men’s experiences of prostate cancer Patients with localised or locally advanced prostate have not only been assessed using QoL instruments, but cancer have treatment options which include: active have been viewed as a consequence of socio-cultural- surveillance, watchful waiting, radical prostatectomy, political influences. radiotherapy [external beam radiotherapy (EBRT) and/or Barriers to understanding men’s health experiences brachytherapy] or hormone therapy (NICE 2012; Prostate have traditionally involved a paucity of evidence, narrow Cancer UK 2013a). Latest figures from National Institute and inappropriate definitions of men’s health and assump- for Clinical Excellence (NICE) indicate that 26% of men tions concerning the relationship between their behaviour receive radical radiotherapy (most commonly EBRT) and and health outcomes (Robertson 2006). The literature the majority of these receive hormone therapy in combi- describes how men’s health behaviour is shaped by the nation (NICE 2013). EBRT in combination with hormone traditional dominant socio-cultural script of hegemonic therapy improves survival when compared with EBRT masculinity, but emphasises how individuals adopt other alone, but this is associated with increased adverse effects forms of masculinity and negotiate deviations from social during and following treatment (Sanda et al. 2008; Ihrig norms to fit the situation (O’Brien et al. 2005; McVittie & et al. 2011). EBRT involves daily visits to a radiotherapy Willock 2006). Research evidence suggests men often feel centre over a number of weeks. Patients often experience unable to discuss how they feel and delay seeking help as distressing physical side-effects which include: urinary they strive to maintain the traditional stoic, fearless incontinence, bowel dysfunction, fatigue, impotence and image (Sabo 1999; Courtenay 2000; Chapple & Ziebland infertility (Prostate Cancer UK 2012). Hormone therapy 2002). Institutional and social structures further reinforce reduces the level of testosterone in the body and may and undermine men’s attempts to adopt healthier habits cause impotence, hot flushes, sweating, gynaecomastia, (Sabo 1999; McVittie & Willock 2006) through lack of weight gain, cognitive impairment, mood swings, depres- gender aware policies that promote men’s early presenta- sion and bone thinning (Grunfeld et al. 2012; Prostate tion to health services. Furthermore, men’s inclination to Cancer UK 2013b). A major concern to patients is treat- avoid health services has been linked to poor understand- ment side-effects, and evidence suggests that the advice ing of how men negotiate their health, ill-health and its

relationship to masculine identity. According to Kelly with extensive disease have increased psychological and (2009) more research is required into how men deal with supportive care needs, whereas receiving curative treat- the physical and emotional vulnerability associated ment is more likely to engender, although not exclusively, with prostate cancer. He suggests that men reclaim their a sense of hope and positive re-framing of experiences former selves through coping strategies that make pros- (Nanton et al. 2009). This study was designed to explore tate cancer less threatening, such as emphasising physical how men receiving curative treatment managed their ﬁtness and adjusting to a ‘new’ body that deﬁes conven- disease on a daily basis and what aided and hindered their tional masculinity. Evidence from the Kelly paper is ability to adjust to events and occurrences throughout the further supported in other studies by Keogh et al. (2013), prostate cancer pathway. Keogh et al. (2014) and Wright-St Clair et al. (2014), who found that men used physical activity and exercise as a strategy for regaining control over the physical and METHODS psychological impact of hormone therapy. In addition, Design the authors describe how more rigorous approaches to exercise were used by men to combat the effects of A cross-sectional qualitative design using semi- de-masculinisation caused by loss of muscle mass and structured, face-to-face interviews and a constructivist physical strength. grounded theory approach (Charmaz 2006) was adopted. It is important to understand the lived experiences of The grounded theory approach assumes that social men with prostate cancer and the impact of their gender reality is individually constructed and recognises the on their experience of the disease and its treatment. mutual creation of knowledge between the researcher and While the body of research surrounding prostate cancer is research participant, suggesting that an interrelationship et al increasing, research into men’s experiences of prostate exists between them (Charmaz 2003; Mills . 2006). cancer while receiving radiotherapy treatment is more The method assumes that the themes and theories gener- limited (Tarnhuvud et al. 2007). Radiotherapy is a key ated from the data are constructed through the experi- treatment choice often administered alongside hormone ences, interactions and meanings attributed by the therapy, yet there are limited qualitative studies which researcher and research participant. Hence, reality is explore men’s experience of living with prostate cancer grounded in the interpretation of events or occurrences while undergoing radiotherapy treatment. While the focus and is dependent on the views and values held by the of policy recommendations has generally been to encour- individual. age person-centred care and treatment through a multi- disciplinary approach (NHS Improving Quality 2013) Ethical considerations there is a relatively low underpinning evidence base detailing the patient experience of receiving treatment for The study was approved by an NHS Research Ethics prostate cancer. Committee and the participating cancer centre. Written It should be noted that men may not associate treat- informed consent was obtained from participants. All data ment side-effects (e.g. urinary and bowel dysfunction) were anonymised and participants’ identity protected with diminished QoL, as they may not view such dysfunc- through the use of pseudonyms. tions as aspects of health but as inevitable consequences of treatment or old age (McPherson et al. 2001; Korfage Sample et al. 2006). In an interesting Swedish study by Lindqvist et al. (2006) the meanings that men with prostate cancer A purposive sample of 27 participants who had a diagnosis attributed to their disease and bodily symptoms were of prostate cancer, were receiving/due to receive curative explored using a phenomenological approach. This was EBRT, were over the age of 18 years and who were able to a cross-sectional study involving men with metastatic provide written informed consent were recruited from a disease, where well-being and QoL were viewed as cyclical specialist cancer centre. Patients who were not able to processes and where periods of illness and wellness were provide written informed consent were not included in accommodated using personal resources and coping the study. Patients were approached prior to radiotherapy mechanisms. There is very little research which explores (n = 9) and 6–8 months (n = 8) and 12–18 months (n = 10) the experiences of men at different stages of curative treat- following completion of radiotherapy. Patients attending ment for prostate cancer which is the focus for this study. the outpatient clinic were offered a Study Information A study by Cockle-Hearne et al. (2013) suggests that men Pack by a member of their clinical team, containing a

letter of invitation to participate in the study, an informa- These were chosen to reflect the areas of supportive care tion sheet and a reply slip and prepaid envelope. Patients need identified by Cockle-Hearne et al. (2013), Kelsey who were interested in participating in the study were et al. (2004) and Nanton et al. (2009), who reported a range asked to send their contact details via the reply slip to of physical, emotional, social and functional challenges the research team who contacted them to discuss the faced by men throughout their cancer journey. Interviews study and respond to any questions. The participant was lasted between 30 and 120 min and were transcribed ver- invited to take part in one recorded interview with the batim. Data collection and analysis proceeded in tandem researcher at a location of their choice. The sample com- with each stage informing the other. prised of participants aged between 57 and 76 years who had received a combination of surgery and/or hormone Data analysis therapy in addition to radiotherapy. The majority of men received hormone therapy concurrently with radiotherapy The transcripts were initially read and re-read and coded and less than half received prostate surgery prior to radio- line-by-line using a descriptive label to reflect the data therapy. Twenty-two participants were retired and most segment. Charmaz (2006) advises that words be coded lived with a partner or spouse. as actions and that maintaining openness when coding This cross-sectional study aimed to capture and under- allows new ideas to emerge. As coding and data collection stand the experiences of men with prostate cancer at dif- progressed simultaneously, codes were organised into ferent time points. The literature suggested that men’s higher level categories which enabled greater explanatory experiences of their cancer varied over time. Nanton et al. potential. Through a process of constant comparison, as (2009) suggest that men’s experiences of prostate cancer proposed by Glaser and Strauss (1967), data were used to differ according to whether they are waiting for the diag- expand pre-existing categories and generate new catego- nosis, making treatment decisions or living with cancer ries as similarities and differences were identified. Similar following treatment. These findings are supported by concepts were grouped together and patterns established Hagen et al. (2007) and Kelsey et al. (2004) who add which helped to explain the development of the core that experiences of treatment are affected by levels of categories. Glaser (1978) describes how relationships professional support encountered and the availability of between categories at this level require focused coding in information on how to deal with side-effects and threats to order that initial codes with analytic weight are integrated identity and masculinity. Similarly, studies by Colella and into the emerging theory. Theoretical saturation was Gejerman (2013), Bell and Kazanjian (2011), Taylor-Ford reached when no new themes emerged from the process et al. (2013) and Cockle-Hearne et al. (2013) have identified that was relevant to the emerging analysis. Data analysis that issues of surveillance, late treatment effects, lifestyle was managed by the research team at an individual and and QoL factors assume significance in the survivorship group level. Each individual researcher analysed their own period. interviews and then discussed their responses within the research group. Data frameworks and matrices were developed to guide the process. The research team also used Data collection reflective diaries, as described by Charmaz (2006), to make A topic guide was developed based on existing literature their interpretation and understanding of the narrative and feedback from men attending a local prostate support text explicit and transparent. group who had agreed to participate in a pilot study. Topics included the impact of the disease and treatment FINDINGS on their physical and emotional health, family and personal relationships, social and occupational role (Table 1). Irrespective of the stage at which they were interviewed there were four areas which men identified as being relevant to their experience of living with prostate cancer. Table 1. Semi-structured interview guide: example questions These were the pathway to diagnosis; the diagnosis; the 1. Tell me about the events that led up to your diagnosis of impact of prostate cancer and its treatment on daily life and prostate cancer. living with prostate cancer. Although the literature had 2. Tell me about the treatment that you’ve had. suggested that the men’s experiences of prostate cancer 3. What has been the impact of treatment on you and your body? changed over time, our findings suggested that there were 4. What has been the impact of treatment on your family and some common elements of their experience which did not relationships? vary substantially. All those who participated in the study

had experienced a diagnosis of cancer and other prostate But it’s just a horrible sensation, having that thing cancer treatments, for example hormone therapy or surgery grabbing bits of your prostate, it’s kind of ripping bits prior to being interviewed. There were some differences out isn’t it. (Pt. 3) between the pre and post radiotherapy groups in terms of That was the worst, that was the WORST of the their expectations regarding radiotherapy. Not surpris- whole experience, the biopsy deﬁnitely. (Pt. 15) ingly, the group of patients who were interviewed prior to radiotherapy voiced concerns about the process and uncer- A biopsy of the prostate was not without complications, tainty about how they would feel during the treatment. For with some men reporting symptoms such as discom- those participants who had had radiotherapy and for whom fort, urinary retention and infections as a result of the the fear of the unknown was not relevant, there were procedure. concerns about the treatment side-effects and living with You walk into the theatre but you sort of come out in prostate cancer in the long term. a slightly worse state than when I was walking into the theatre. (Pt. 3) Pathway to diagnosis

The pathway to the diagnosis of prostate cancer varied, The diagnosis with individuals presenting to their doctor for different Not surprisingly, the majority of respondents were reasons. The majority reported symptoms such as urinary shocked to receive the diagnosis of prostate cancer. For frequency, nocturia, difficulty passing urine, tiredness some men, the symptoms with which they had been and inability to maintain an erection. Although several living had previously been attributed to the normal ageing men initiated the consultation themselves, others were process. prompted by their wives and some were invited to attend by their GP. Prostate cancer screening was initiated either It’s very difficult for men because it happens to by the GP or requested by the individual. A small number normal people anyway, you know, it’s not a dead cert of men had their prostate cancer diagnosed in the course of symptom because it’s a symptom of getting old. being treated for other medical conditions. A few men had (Pt. 12) had their PSA monitored for a few years before an eleva- You go a bit numb you know. . . . neither of us tion in the PSA was detected and prostate cancer con- expected it. (Pt. 13) firmed as a diagnosis. Surprisingly, although men reported the importance of the PSA test in being diagnosed, not all A few respondents reported that the diagnosis confirmed of the men understood what the PSA test measured or the what they suspected. contested nature of the test. I was already sort of prepared that there might be an It’s something to do with the numbers. Well I didn’t unfavourable diagnosis. (Pt. 18) know . . . 28 what? You know it’s all double Dutch Men reacted differently to the hidden nature of the cancer. you know . . . (Pt. 6) For some participants the invisible nature of the disease it could be very high, it could be low, . . . it all depends was a source of anxiety, while for others it enabled the on stress or whatever and I believe if you’ve been disease to be ignored. riding a bike it’ll alter it again, so, it’s only a guide When you can’t see what you’ve got, you don’t know isn’t it. (Pt. 8) what’s going on and it’s . . . you just don’t know Some participants were aware that changes to the PSA what’s going on and it wrecks your head. (Pt. 6) level were central to interpreting the results of the test. Something that I can’t see or that’s not tangible or no Perhaps the most important thing with PSA level is symptoms, so that’s why it hasn’t bothered me. (Pt. 7) not so much the measured amount but the rate of A number of psychological strategies were identified by change. (Pt. 14) the men to help them deal with the impact of the diagno- Although the PSA was the most commonly reported test, sis. These included viewing their situation in a positive the digital rectal examination and prostatic biopsy were light and drawing on a repertoire of skills developed over identified as the most painful and invasive of investiga- their working life, such as believing that the cancer was tions. For one participant, the experience was described as non-invasive and non-aggressive and using humour to worse than having prostate cancer. diffuse the emotional nature of the diagnosis.

I mean it’s not like very invasive, it’s not very life make the decision for them, but in all cases access to threatening so I mean I don’t know how I would have detailed and timely information was crucial for effective reacted if I’d had pancreatic cancer or something. decision-making. (Pt. 10) There’s another thing I don’t agree with, they can’t I kind of sort of feel determined to you know cope advise you on what to do. It’s . . . to me it’s daft. (Pt. 13) with it and tackle it head on, I feel determined to beat I haven’t got a clue. I am terriﬁed to ask. I don’t know. it. (Pt. 3) (Pt. 6) I was a bit shook then but I went out with my mates Participants used a variety of knowledge sources and at the weekend they took the mic out of me and it just beliefs when deciding to accept radiotherapy. These stopped it dead . . . so yeah the lads, if you are having ranged from avoidance of potential complications associ- a bevy with them just laugh it off, it works. (Pt. 20) ated with treatment, to understanding radiotherapy as a When you’ve spent 30 odd years at sea you learn to minimally invasive intervention to physical health and cope with things. (Pt. 24) functional ability.

I’ve been a prison ofﬁcer and I can handle things. I have seen prostatectomies and TURs and I think (Pt. 15) there is a high element of incontinence with it and I didn’t want to go down that road. (Pt. 4) A few men reported withdrawing into themselves as a way of coping with the diagnosis. Thinking about it radiotherapy probably seems like a better option, it seems like a ﬁner tool to me for doing Pull the blinds down don’t you? You put the shutters the job. (Pt. 3) down. (Pt. 6) Whereas I was thinking with the steroids and the The impact of prostate cancer and its treatment on radiation I could probably carry on more or less as daily life normal. (Pt. 3)

Following the cancer diagnosis, participants sought to The pre-radiotherapy preparation regimes were reported to make sense of what had happened by reflecting on what have had an impact on the individual’s ability to cope they could have done differently and how health behav- with radiotherapy. The physical and emotional discomfort iours could be positively influenced as a result. associated with bladder and bowel preparation was com- pounded by having to wait for treatment and lie still on You think that something like that will never happen the treatment couch. to you ’cause I mean I don’t smoke. (Pt. 6) You have drunk your water to empty your bladder etc. I should have gone a bit sooner. I should have maybe etc. and filled your bladder up again. And you’re realised things weren’t quite normal and in future sitting there and you’re thinking and it’s 15 mins and obviously I would do. (Pt. 19) it’s now 45 and your knees are crossed and your eyes For one participant, prostate cancer was over-shadowed by are watering and you think ‘I still have 10 mins before pre-existing health conditions. I lie on that bloody table’. (Pt. 23)

I certainly wasn’t devastated by the fact that I’d got Worst part of that was taking the treatment for it ﬁrst. cancer . . . I think probably . . . one of the reasons was (Pt. 24) that perhaps the heart was taking precedence over it, The radiotherapy was no problem, it was what you in my mind. (Pt. 14) had to do beforehand. (Pt. 11) Following diagnosis men were required to make decisions The degree to which radiotherapy impacted on men’s eve- about which treatments to have (surgery, radiotherapy, ryday lives varied. Attending radiotherapy was time con- brachytherapy, hormone treatment, active surveillance suming, interfered with usual activities and required the and watchful waiting). A number of factors inﬂuenced the re-organisation of life. Strategies were often used to accel- decision-making process such as the nature of information erate time and expedite the completion of treatment. shared by healthcare professionals, the extent to which men understood the treatment and the time available I couldn’t swim for six weeks. Not because you to make the decision. Some men wanted others to couldn’t swim, but because the time that you were

going to the hospital was when we usually went for a One participant reflected on the emergence of health swim. (Pt. 12) symptoms after completing radiotherapy. For some men delayed effects were unexpected, but the majority devel- I’m on shifts but I arranged with work so I could go in oped strategies for reducing their impact on daily life. and stay on the morning shifts so I would go in to work for 6 o’clock, finish at 10 o’clock, come home Well, certainly by the end of the treatment I was get changed go to. . . . and have the treatment. (Pt. 11) having to get up in the night . . . I would rather just sort of get up in the middle of the night than have yet However, for a number of men, the retrospective appraisal more pills to take. (Pt. 18) of radiotherapy in the post-radiotherapy groups was viewed as unproblematic, since the treatment was not In the pre-radiotherapy group, men often engaged in esti- considered to cause discomfort or pain. mating the likely impact of radiotherapy and whether side-effects would prove troublesome or not. It sound funny for me to say but it was a pleasant experience if you can understand what I mean, to when you have the radio treatment it’ll, it starts to what I was expecting . . . the actual experience there’s swell and of course if it swells it’ll close up the no problem what so ever, no pain nor anything. (Pt. urethra so I may have problems there. (Pt. 8) 17) Living with prostate cancer in the long term Well it’s not painful, if anything, it’s slightly, it’s slightly boring because you spend a lot of time For some respondents, the recovery period following com- waiting. (Pt. 13) pletion of treatment involved a series of adjustments to cope with long-term health effects such as tiredness and The majority of all men in the study had previously nocturia. This occurred at a practical and personal level. received hormone therapy. Almost all of the men had experienced unpleasant effects such as loss of masculinity I now very rarely get up during the night . . . I can and sex drive, feminisation of the body, hot flushes and control it, if I’m going anywhere I won’t have a big sweats. Changes to masculinity and sex drive were viewed cup I’ll have a smaller cup. (Pt. 22) as particularly distressing, while feminisation of the body Although long-term health issues were accommodated by led to embarrassment. the majority of respondents, for a few, the physical effects Basically the hormones have just diminished all from prostate cancer and its treatment proved to be unex- thought, interest in sex, the physical side of it is just pected and disruptive. impossible. (Pt. 2) Over the last 12 months I’ve had proctitis, bleeding The symptoms of the hormones is the aches and pains through my back passage when I go to the toilet . . . that I’ve got which are quite debilitating in regard to they said it was probably caused by the radiotherapy my muscles in my legs, joints and everything, I’m on and my only concern is that they didn’t tell me that it painkillers for them. (Pt. 11) was possible. So when it first happened, having had cancer, it scared the living daylights out of me. (Pt. 22) Following completion of radiotherapy men in the post- radiotherapy groups recalled a range of experiences from It was not uncommon for men to engage in health- not feeling unduly affected by the treatment, to coping promoting behaviours designed to maximise their survival with unexpected physical effects such as urinary and potential, such as living a healthier lifestyle. For obvious bowel problems or fatigue. The occurrence of side-effects reasons, cure and survival became a central focal point for were often traded off against the benefits derived from men in the study, with 10 years being used as a landmark radiotherapy. for assessing health outcomes.

Never felt ill or I felt quite good and every time I With regards to treatment they won’t really know if would go and see the nurses for these recap things, I it’s been successful until about 10 years time. (Pt. 24) felt like a fraud. (Pt. 20) How men approached and managed relationships with It’s a nuisance getting up in the night but I would those around them, particularly spouses, was an impor- rather do that than . . . in balancing it up you would tant ﬁnding in this study. Spousal relationships were rather . . . I would say yeah okay it’s a trade-off and usually the focus for mutual support and inﬂuenced that’s the way at the moment I will play it. (Pt. 18) the way participants managed their disease. It was not

unusual for relationships to be strengthened through family, friends and finances were all regarded as important experiences. However, while cancer often bought couples sources of help that made life easier. closer, it also accentuated any differences in coping I dunno how well I’d have coped without her in effect. responses and adjustment styles. (Pt. 23) I think she just worries I think about the outcome, You are relying on your mates to a certain extent and more than I thought she would have done. She never the family and what little savings and a little bit actually expressed it to me. (Pt. 17) of help from the bank. That’s how we got through it. There have been times when the wife has said to me (Pt. 23) you’ve been more aggressive. (Pt. 2) You know that people are there if you need them. The resumption of sexual activity was a significant issue (Pt. 10) for many respondents. The physical and emotional consequences of prostate cancer impacted on the individual’s DISCUSSION masculinity, identity and sense of self-worth. The study findings highlight a number of important issues You’ve lost a bit of your manhood, but like I say, your to the health and well-being experiences of men with health’s more important than that. (Pt. 17) prostate cancer from diagnosis, through treatment and into the survivorship period following treatment comple- I suppose some men would feel, oh gosh, it’s ruining tion. The emerging themes from this cross-sectional study my life or whatever, maybe not feeling a man revealed similarities in how men adjusted to their disease anymore but it certainly isn’t an issue with me. across the three time points. All participants had received (Pt. 10) their diagnosis and were being actively monitored and A variety of approaches were taken to dealing with physi- treated for early stage disease. Although there was evi- cal symptoms such as erectile dysfunction. While some dence of some differences between men’s accounts prior men adopted measures to rectify loss of sexual function, to and following radiotherapy in terms of the uncertainty others minimised its impact as a shared decision with the about what to expect, the majority of men focused on the spouse and a consequence of advancing age. However, it physical and emotional impact of the diagnosis and treat- was less apparent how the distress and sense of loss ment on their health and QoL. This illustrates the con- expressed by participants was resolved or managed. tinuous and sequential nature of individual experience when managing a life-threatening condition and high- Well of course . . . with the treatment and all . . . you lights how men adopt a range of strategies to adjust, nor- lose your sexual relationship and all that . . . but that malise and regain control in the presence of their cancer does not worry us at our age. I’m 68. (Pt. 15) diagnosis, drawing on similar techniques and applying It’s affected my wife in the respect that . . . you know, these to their individual situation. For example, it was not our love life and that has really affected her to be uncommon for men to re-prioritise their lives by altering perfectly honest, yeah it has upset her . . . I feel sorry plans and adopting new lifestyle routines, reconfiguring for her if you know what I mean. (Pt. 20) life to accommodate their condition. In cases where there was long-standing illness or disability in the participant or She’s . . . a fair bit younger than me so it’s not been their spouse, coping was embedded in the usual way of great but she’s been great. We’ve accepted it. What managing health problems, where events became normal- else can you do? (Pt. 11) ised and, in some instances, the cancer took second stage. A number of participants sought to maintain their sex life This finding illustrates how men may draw on a range of by seeking medical intervention. pragmatic considerations when managing their disease experience. The physical side of it is just impossible, I’ve been and It was apparent that the journey to diagnosis varied had the sex therapy, whatever you want to do, we can among participants, with triggers for help seeking ranging give you pumps, we can give you tablets, I’ve had the from active engagement with health services in response tablets, it worked at first and what happened then it to specific symptoms, to passive help seeking based on was just no interest whatsoever. (Pt. 11) prompting from others. In some cases, help seeking was A range of support systems were used to aid coping and targeted at other symptoms which resulted in the oppor- positive emotional adjustment to cancer. The spouse, tunistic detection of prostate cancer. This resonates with

other studies on cancer detection (e.g. Wall et al. 2011) groups as significant to their disease experiences, with which highlight the need for a rigorous strategy for devel- most informal support being obtained from pre-existing oping more effective early help seeking behaviours to aid networks. The findings from a Dutch study by Voerman cancer detection. Furthermore although a range of health et al. (2007) may partly explain this, as support group beliefs were identified, our study showed that men often participation was found to be highest among younger attribute their symptoms to less-threatening causes such men, those with little social support and those with a as a consequence of old age. This highlights some of the positive orientation to groups. difficulties experienced by individuals when differentiat- Men in this study used a range of coping strategies ing between cancer and less serious illness and raises the consistent with the literature on masculinity and gender question of what initiates men to seek help for their pros- norms. While some participants reported avoiding talking tate symptoms. It may be as Wall et al. (2011) suggests or thinking about cancer, others proactively managed that a combination of factors stimulate help seeking their disease by altering their behaviour and engaging with behaviour rather than specific symptoms alone and the health services. These findings are in line with existing emotional response to the symptom may influence research which locate men’s health behaviours within the the attribution made, all of which requires further context of male socialisation and gendered constructions investigation. embedded in western culture (Chapple & Ziebland 2002), Traditionally, men have been portrayed as reluctant to where becoming ill and losing control over the body is talk about their health and to seek health advice from viewed as a threat to masculinity (Gray et al. 2002). In professionals for health problems (Vogel et al. 2011; addition, men are more likely to adopt a stoic attitude to Wenger 2013; Yousaf et al. 2013). Men in our study shared health matters and to use pragmatism, humour and avoid- their experiences with other men within various social ance to ease distress and feelings of emasculation (Gray contexts, for example pubs and hobby clubs, often encour- et al. 2002; Wall & Kristjanson 2005; Oliffe et al. 2009). aging them to seek advice for health issues. Peer support Cultural norms dictate the nature of the masculine role in was commonly valued as an outlet for emotions and pro- society and the behavioural traits expected of men, that is, vided opportunities for camaraderie, collective endeavour the man as provider, ‘breadwinner’ and protector of the and the mutual desire to help others. The relationship family. Consequently men’s actions are wired into a set of with healthcare professionals was also important, particu- socio-cultural values which may generate barriers to their larly the Consultant who was instrumental in the nego- effective engagement with health issues. A study by tiation of solutions to health problems. Indeed, Berger O’Brien et al. (2005) reports how men often require pres- et al. (2013) made a similar observation concerning the sure from others, particularly spouses/partners to engage impact of social settings on men’s willingness to talk, in health behaviours, as this provides a way of legitimising although they acknowledge self-selection bias in their and preserving their masculine identity. In addition, sample. The findings from this study support the devel- men may seek preservation of their masculine identity opment of gender-specific and gender-sensitive settings through, for example, the confirmation of a diagnosis in and environments through which men can be encouraged order to continue in masculine roles, particularly those to become health aware by talking about their health requiring physical strength (O’Brien et al. 2005; Maliski experiences. et al. 2008). Indeed, we found that some participants iden- We also found that men valued practical and emotional tified pre-cancer occupational roles as a way of coping, support from their spouse and family, contrary to other that is, macho occupations that required resilience and research where men were less likely to access social fortitude and which could be applied in the same way to support and receive emotional help from their relation- managing the disease situation. ships, preferring information exchange over emotional An interesting finding from this study was the way in connection (Clarke et al. 2006). However, our findings do which some men constructed their prostate cancer as a support those of Carlson et al. (2001) and Greeff and Thiel potentially non-threatening disease associated with few (2012) who found that men rated the emotional support symptoms and a positive prognosis. The diagnosis was obtained from their spouse and family of primary impor- often compared with other diseases which rendered it less tance. Similarly, in a UK study of men’s experiences of problematic. Other cancers were considered more aggres- radiotherapy for prostate cancer, Kelsey et al. (2004) found sive and chronic diseases such as rheumatoid arthritis and that family were viewed as the primary source of support, ankylosing spondylitis were highlighted as being more followed by friends and work colleagues. There was little troublesome. This mirrors research by Carter et al. (2011) evidence in this study to suggest that men viewed support in their study of supportive care needs in patients with

advanced prostate cancer, where individuals considered men to explain the loss of their sex life as a consequence themselves fortunate not to have a worse cancer. These of old age or as a mutual decision made with their partner, findings may not be surprising given the improved sur- a finding discussed in a study by Maliski et al. (2008). vival statistics and treatment control for early stage pros- However, acquiescence or downplaying sex often had con- tate cancer compared with other cancers. Participants in sequences for the individual. Participants expressed grief this study were receiving curative treatment and some concerning the reduced opportunities for intimacy and had long-term co-morbidities that pre-dated their cancer being attractive to the opposite sex, often being more diagnosis, causing a range of debilitating health symptoms concerned about the impact on their spouse. This was which impacted negatively on their QoL. In comparison, particularly apparent in a small number of men in the some participants viewed prostate cancer as a secret study who lived alone and felt that their chances of disease, not associated with pain, visible swelling or inca- meeting anyone might be compromised by their situation. pacity. This supports other research findings (Soler-Vila The issues associated with being single and managing et al. 2011; Chojnacka-Szawlowska et al. 2013), suggest- prostate cancer merit further investigation, and how needs ing that positive psychological adjustment in patients is may differ from men who are in relationships. Exploratory associated with the belief that the cancer could be effec- studies can assist in providing a broader understanding of tively controlled. Conversely, where the patient believes how marital status impacts on QoL and lifestyle choices that the cancer is incurable there is an increased likeli- following diagnosis and beyond into the survivorship hood of the patient experiencing increased anxiety and period. depression. The PSA test dominated many participants’ narratives. Our study highlighted the impact of investigational and It was common for men to focus on the numerical values treatment factors on how men came to terms with their derived from the test, the extent to which these changed diagnosis. Participants demonstrated heightened anxiety over time and how the results compared with those of and distress concerning the invasive and painful nature of other men. There was not a great deal of understanding rectal examinations which for some men were considered about what the test was, nor of its contested nature. Oliffe worse than the experience of prostate cancer as a whole. and Thorne (2007) make the point that men will often Several studies have described the reasons why men find self-direct their knowledge of prostate cancer through the the digital rectal examination and rectal probe problem- use of biomedical language and numerical markers when atic and a threat to their masculine identity (Oliver 2007; describing and explaining their disease. As Ervik and Winterich et al. 2009; Rivera-Ramos & Buki 2011). In a Asplund (2012) state, ‘numbers and figures are concrete, UK study by Kelly (2009) the intimate nature of diagnostic the test results become something to hold on to and procedures was associated with trauma and a breach of may allow patients to feel some measure of control in a the boundaries of the physical body. This study used an chaotic, emotional situation’ (p. 107). This study suggests ethnographic approach to explore the experiences of 14 that the implications and consequences of commencing recently diagnosed men with prostate cancer. Findings PSA testing need to be adequately understood by individu- from these studies identify the anal zone as sacred to als prior to its occurrence, a recommendation which has heterosexual men, where anal penetration is viewed as a been reported elsewhere (Dube et al. 2005; Burford et al. homosexual act and a violation which threatens the nor- 2009). This should include information on the risks asso- mative notions of manliness and leads to stigma, fear and ciated with prostate cancer screening, such as bleeding or devaluation. This study highlights the need for health infection (Ferrante et al. 2011) and an understanding of the messages to take into account the meanings attributed patient’s personal beliefs and prior knowledge of investi- to rectal examinations in men and for professionals to gational procedures. present information in a way that emphasises the psycho- Following their diagnosis, men identified treatment as logical, emotional and practical aspects of such investiga- a component of coming to terms with their disease. Since tional procedures. We suggest further research to explore the majority of men in this study had been prescribed the impact of the rectal examination on men’s perceptions hormone therapy prior to radiotherapy, men were able to of prostate cancer and how the investigational journey identify the specific strategies they used to deal with might be managed more effectively. radiotherapy. Consistent with the literature, hormone The effect of altered sex life associated with the diagno- therapy created a range of physical and emotional needs in sis and treatment of prostate cancer is explored in several men associated with feminisation, hot flushes and altered studies (Arrington 2008; Wenger & Oliffe 2012) and was sex drive (Carter et al. 2011; Grunfeld et al. 2012; Eziefula important to men in our study. It was not uncommon for et al. 2013). Indeed, men in this study described strategies

such as concealment for dealing with embarrassing body due to frequent attendance at the treatment centre. They image changes as a result of hormone therapy. Radio- conducted focus groups with men who had recently therapy, on the other hand, is known to produce gastroin- completed a course of radiotherapy for localised prostate testinal symptoms and impairment of urinary or sexual cancer. Indeed, men in our study appreciated the camara- function (Hedestig et al. 2005). Radiotherapy involved derie and approachability of the radiotherapy team in dealing with late, and sometimes unexpected, side-effects making the atmosphere of the treatment centre less up to 6 months following completion of treatment, and threatening and more personal. An important finding from sometimes extending up to a year or more (Macmillan this study was the impact of the pre-radiotherapy regime 2012). These include tiredness, sore skin, bladder and on the health and well-being of participants, particularly bowel irritation and changes to sexual function (Queenan the self-administration of enemas for bowel clearance and et al. 2010; Cancer Research UK 2012). A number of par- the need to maintain a full bladder. Some participants ticipants in the study described debilitating symptoms found this part of the treatment stressful and uncomfort- which impacted significantly on their QoL and well-being, able, which highlights the need for further research into for example bleeding, nocturia and fatigue. Various strat- the structural and organisational aspects of radiotherapy egies were used by men to overcome these, such as regu- and the impact they have on men’s health and well-being. lating daily fluid intake and taking periods of rest. Further Current evidence suggests that patient’s knowledge and investigation into the impact of late radiotherapy effects understanding of radiotherapy is limited, but may be on men’s daily lives is supported by Ervik and Asplund improved through better information and positive media (2012), as well as the development of supportive interven- messages (Hammick et al. 1998). This should include the tions to help men deal with the impact of potentially way in which men make decisions about receiving radio- stigmatising and isolating symptoms. therapy and how the treatment is viewed in the context of The issue of symptom management is explored in other treatments for prostate cancer, for example as an studies by Keogh et al. (2013), Keogh et al. (2014) and intervention that is targeted, precise and minimally inva- Wright-St Clair et al. (2014) were men used physical exer- sive to health and functional ability. However, this study cise and activity to reduce the debilitating physical effects highlighted how men’s beliefs about radiotherapy influ- associated with hormone therapy, to manage co-morbidity enced their treatment choice. The potential discomfort and to achieve psychological well-being. Interestingly, the and side-effects associated with radiotherapy were traded study by Wright-St Clair found that men’s appraisal of off by some men against the prospect of being cured and their health status influenced their motivation to engage receiving a relatively pain-free intervention. The conclu- in exercise as a way to cope and achieve a sense of control sions drawn from this study suggest that consultations in their situation. It was evident in our study that a with patients about radiotherapy should focus on the number of men sought make lifestyle changes as a result expectations and motivations of the patient and how they of their diagnosis, but this differs from the three studies might manage the treatment and rehabilitation experi- cited above who purposively recruited patients who were ence. This could assist healthcare professionals to identify physically active and engaged in exercise programmes. In the barriers and opportunities for promoting a positive addition, the sample only included men on hormone healthcare experience among patients and their family therapy who were not actively receiving radiotherapy, members, thereby maximising the individual’s QoL and chemotherapy or surgery, whereas this study included well-being. men who had recently received a range of treatments and were experiencing early and late treatment effects. CONCLUSION For the majority of participants, radiotherapy required logistical co-ordination and planning to meet the daily This study identified several key areas relevant to the way treatment schedule, often involving the re-organisation of in which care and treatment are organised for men with routines and roles. The impact of the radiotherapy regime a diagnosis of prostate cancer. The various stages of the on men’s daily lives has been relatively underexplored in diagnostic and treatment pathway give rise to a range of the literature, where attention has largely focused on the unique and diverse influences on the physical, emotional availability of information, support and management of and social well-being of men and their informal networks. treatment side-effects during and after radiotherapy (Adler The impact of investigational procedures emerged as par- et al. 2009; Queenan et al. 2010). However, a UK study by ticularly significant in how men adjusted and coped with Kelsey et al. (2004), found that men receiving EBRT often their diagnosis. The results of this study suggest that developed closer relationships with the radiotherapy staff further work is required to understand men’s experience

of radiotherapy and how the treatment impacts on mas- different findings if a longitudinal design had been used culine identity. It is important that staff assess patient with the same men over a period of time. needs particularly in the domains of sex life and the long- term impact of treatment-related side-effects. Finally, the ACKNOWLEDGEMENTS study reinforces the need to take account of the patient’s viewpoint through more prospective studies, rather than We give our grateful thanks to all the participants and focusing wholly on clinical outcomes. those Prostate Cancer Support Group members who assisted us in setting up the study and piloting the docu- mentation. We would especially like to thank our lay STUDY LIMITATIONS research team member who provided such valuable This study used a constructivist grounded theory approach advice, generously gave their time and shared their expe- to explore men’s experiences of prostate cancer and health riences for the benefit of the study. We are also most services. Although it adds to the previous body of knowl- grateful for the help and support given by the academic edge by providing an interpretative understanding, the leads for the study who reviewed the work and provided limitations of the study should be recognised. Participants editorial support. The work was supported, in part, were recruited from one cancer centre and, as such, it could through charitable funding provided by The Clatterbridge be that local factors may have affected the patient experi- Cancer Centre, Bebington, Wirral. ence. Only participants receiving EBRT were included in the study. Furthermore some men underwent additional CONFLICT OF INTEREST treatments and their experiences may have been affected by these. A cross-sectional sample was used with different There is no known conflict of interest for any of the men at specific points of time. There may have been authors associated with this paper.

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