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The Impact of Prostate Cancer on Mens Everyday Life

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The Impact of Prostate Cancer on Mens Everyday Life bs_bs_banner 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, relation- ships 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 associ- ated 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 diag- nosed 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 © 2014 John Wiley & Sons Ltd APPLETON ET AL. 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
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