NIHR DC Discover

NIHR Signal Men feel physically and psychologically ill-prepared for prostate cancer surgery

Published on 28 November 2017

doi: 10.3310/signal-000513

Following prostate cancer surgery men often experience physical changes, such as urinary incontinence and erectile dysfunction, causing negative emotions and distress. This review found that men felt poorly prepared – psychologically and physically – for the changes they might experience after surgery. Surgery was often described as "life-changing", and men described worrying about their future.

NICE recommend that men and their partners/carers are fully informed about prostate cancer treatment options and their possible complications, and are supported in decision-making. This includes having access to psychosexual support at any time.

This global review represents the views of men from many countries including the UK. It gives insights into individual experiences and psychological effects of prostate surgery suggesting that practitioners in this field might be failing to meet patient needs.

It highlights the need for better information and support about the potential physical and emotional effects both before and after surgery.

Share your views on the research.

Why was this study needed?

Prostate cancer is the second most common cancer in the UK, affecting one in eight men in their lifetime. Treatment depends on the stage of cancer and the individual patient. If prostate cancer is detected early, men may be suited to “watchful waiting” or “active surveillance” – regular monitoring to check the cancer has not spread.

This is usually recommended for otherwise healthy men whose cancer is localised (within the prostate) or spread to the area immediately surrounding the prostate (locally advanced).

Surgery can lead to urinary incontinence and erectile dysfunction. While these symptoms often improve over time, two in 10 men will have long-term urinary incontinence and around half experience long-term erectile dysfunction.

Past research has focused on clinical outcomes and complication rates following surgery. This review explored men’s experiences – their views and emotions – of undergoing prostatectomy.

What did this study do?

This review identified 15 qualitative studies, including interviews and focus groups of men who had undergone prostate surgery. Studies were published 1999-2013. Two came from the UK, the rest from Australia, Brazil, Canada, Ireland, Israel, Sweden, Switzerland, Turkey and the US.

The authors identified five overarching themes: facing a life-changing situation, experiencing changes and their impact, striving to manage and adjust to changes, coping with masculinity, and anticipating the future.

The fact that the studies were not built on existing theories highlights that the topic may not be well researched. The review was limited to English language and published studies, so there is a chance that studies containing useful perspectives were excluded. The authors also acknowledge that their professional experience (nursing) may have influenced analysis and synthesis.

What did it find?

  • Men often described prostate surgery as "life-changing", and although they recognised the trade-off involved between survival and post-operative complications, these complications were the greatest source of distress. Linked to this, men often anticipated the future, worrying about the potential return of the disease and whether post-operative complications (especially erectile dysfunction) would improve over time.
  • Many men felt that there was a lack of information about what would happen after surgery, despite their efforts to identify this information. This left men feeling psychologically and physically ill-prepared for and sometimes surprised by, the complications they experienced.
  • Physical changes were common after surgery, contributing to negative emotions in many men (anxiety, depression, embarrassment, frustration or shock) which impacted on interactions with family and friends. However, some men described physical changes leading to positive psychological changes such as re-evaluating life and improving communications with their families.
  • Men struggled most with erectile dysfunction as it contributed to a feeling of a loss of masculinity, guilt towards their partner and lower self-esteem. Some men were able to discuss sexual problems openly, but others struggled with embarrassment. Men identified a need for greater support from health professionals and for their partners to be included in these discussions.
  • Some men found it easier to manage and adjust to the physical changes they experienced than the psychological aspects. Men received information and support from a variety of sources; the value of support from health professionals was said to be mixed.

What does current guidance say on this issue?

NICE 2014 guidelines recommend providing men with information to support their involvement in decision-making about their care. NICE specifically recommend ensuring that men and their partners/carers are aware of the potential impact of the proposed treatment on sexual function, physical appearance, continence and other aspects of masculinity.

Men and their partners/carers should also have the opportunity to talk to healthcare professionals with experience of psychosexual issues at any stage of their illness and treatment.

What are the implications?

These experiences, reported by men themselves, have implications for those who treat or care for them.

Men report that surgery was life-changing and complications arising from surgery were the most troubling aspect. Many felt they lacked information about the impact of surgery. So it is important to talk to patients before about what to expect and their likely emotional responses.

This might mean, for example, asking “what are your concerns about surgery and afterwards?” or “How do you think you might feel if you developed complications?”

There are practical questions to consider such as:

  • “What practical steps and support might help you in dealing with urinary incontinence?”  or
  • “Do you want to know what kind of sexual problems some people experience after surgery?”

Information provided could include examples of how other people cope and what helps them. Providing contact details for who to contact for advice and support after surgery is important.

Psychosexual support should be available throughout treatment, so healthcare professionals need to discuss this openly, so individuals feel able to ask for that help.

Citation and Funding

Kong EH, Deatrick JA, Bradway CK. Men's experiences after prostatectomy: A meta-synthesis. Int J Nurs Stud. 2017;74:162-71.

No funding information was provided for this study.

Bibliography

Cancer Research UK. Prostate cancer statistics. London: Cancer Research UK.

Cancer Research UK. Prostate cancer diagnosis and treatment statistics. London: Cancer Research UK.

NHS Choices. Prostate cancer: treating prostate cancer. London: Department of Health; updated 2016.

NICE.  Guidance on cancer services: improving outcomes in urological cancers. London: National Institute for Health and Care Excellence; 2002.

NICE. Prostate cancer: diagnosis and management. CG175. London: National Institute for Health and Care Excellence; 2014.

Why was this study needed?

Prostate cancer is the second most common cancer in the UK, affecting one in eight men in their lifetime. Treatment depends on the stage of cancer and the individual patient. If prostate cancer is detected early, men may be suited to “watchful waiting” or “active surveillance” – regular monitoring to check the cancer has not spread.

This is usually recommended for otherwise healthy men whose cancer is localised (within the prostate) or spread to the area immediately surrounding the prostate (locally advanced).

Surgery can lead to urinary incontinence and erectile dysfunction. While these symptoms often improve over time, two in 10 men will have long-term urinary incontinence and around half experience long-term erectile dysfunction.

Past research has focused on clinical outcomes and complication rates following surgery. This review explored men’s experiences – their views and emotions – of undergoing prostatectomy.

What did this study do?

This review identified 15 qualitative studies, including interviews and focus groups of men who had undergone prostate surgery. Studies were published 1999-2013. Two came from the UK, the rest from Australia, Brazil, Canada, Ireland, Israel, Sweden, Switzerland, Turkey and the US.

The authors identified five overarching themes: facing a life-changing situation, experiencing changes and their impact, striving to manage and adjust to changes, coping with masculinity, and anticipating the future.

The fact that the studies were not built on existing theories highlights that the topic may not be well researched. The review was limited to English language and published studies, so there is a chance that studies containing useful perspectives were excluded. The authors also acknowledge that their professional experience (nursing) may have influenced analysis and synthesis.

What did it find?

  • Men often described prostate surgery as "life-changing", and although they recognised the trade-off involved between survival and post-operative complications, these complications were the greatest source of distress. Linked to this, men often anticipated the future, worrying about the potential return of the disease and whether post-operative complications (especially erectile dysfunction) would improve over time.
  • Many men felt that there was a lack of information about what would happen after surgery, despite their efforts to identify this information. This left men feeling psychologically and physically ill-prepared for and sometimes surprised by, the complications they experienced.
  • Physical changes were common after surgery, contributing to negative emotions in many men (anxiety, depression, embarrassment, frustration or shock) which impacted on interactions with family and friends. However, some men described physical changes leading to positive psychological changes such as re-evaluating life and improving communications with their families.
  • Men struggled most with erectile dysfunction as it contributed to a feeling of a loss of masculinity, guilt towards their partner and lower self-esteem. Some men were able to discuss sexual problems openly, but others struggled with embarrassment. Men identified a need for greater support from health professionals and for their partners to be included in these discussions.
  • Some men found it easier to manage and adjust to the physical changes they experienced than the psychological aspects. Men received information and support from a variety of sources; the value of support from health professionals was said to be mixed.

What does current guidance say on this issue?

NICE 2014 guidelines recommend providing men with information to support their involvement in decision-making about their care. NICE specifically recommend ensuring that men and their partners/carers are aware of the potential impact of the proposed treatment on sexual function, physical appearance, continence and other aspects of masculinity.

Men and their partners/carers should also have the opportunity to talk to healthcare professionals with experience of psychosexual issues at any stage of their illness and treatment.

What are the implications?

These experiences, reported by men themselves, have implications for those who treat or care for them.

Men report that surgery was life-changing and complications arising from surgery were the most troubling aspect. Many felt they lacked information about the impact of surgery. So it is important to talk to patients before about what to expect and their likely emotional responses.

This might mean, for example, asking “what are your concerns about surgery and afterwards?” or “How do you think you might feel if you developed complications?”

There are practical questions to consider such as:

  • “What practical steps and support might help you in dealing with urinary incontinence?”  or
  • “Do you want to know what kind of sexual problems some people experience after surgery?”

Information provided could include examples of how other people cope and what helps them. Providing contact details for who to contact for advice and support after surgery is important.

Psychosexual support should be available throughout treatment, so healthcare professionals need to discuss this openly, so individuals feel able to ask for that help.

Citation and Funding

Kong EH, Deatrick JA, Bradway CK. Men's experiences after prostatectomy: A meta-synthesis. Int J Nurs Stud. 2017;74:162-71.

No funding information was provided for this study.

Bibliography

Cancer Research UK. Prostate cancer statistics. London: Cancer Research UK.

Cancer Research UK. Prostate cancer diagnosis and treatment statistics. London: Cancer Research UK.

NHS Choices. Prostate cancer: treating prostate cancer. London: Department of Health; updated 2016.

NICE.  Guidance on cancer services: improving outcomes in urological cancers. London: National Institute for Health and Care Excellence; 2002.

NICE. Prostate cancer: diagnosis and management. CG175. London: National Institute for Health and Care Excellence; 2014.

Men's experiences after prostatectomy: A meta-synthesis

Published on 8 August 2017

Kong, E. H.,Deatrick, J. A.,Bradway, C. K.

Int J Nurs Stud Volume 74 , 2017

OBJECTIVE: The purpose of this review was to critically analyze, interpret, and synthesize the literature on men's experiences after prostatectomy. DESIGN: A meta-synthesis was conducted. DATA SOURCES: Six databases (PubMed, EMBASE, CINAHL, PsycINFO, AgeLine, and Sociological Abstract) were searched from the earliest year to 2016. From initial searches with main keywords (prostatectomy and qualitative study), 642 abstracts were retrieved. Based on inclusion criteria (English-language published qualitative study focusing on the experience of men after prostatectomy), this meta-synthesis included 15 studies. REVIEW METHODS: Components of meta-study (meta-data-analysis, meta-method, and meta-theory) were employed to analyze, interpret, and synthesize the results of included studies. Three authors independently appraised the methodological quality of the included studies using a combined appraisal tool (The Critical Appraisal Skills Programme Qualitative Research Checklist and Paterson et al.'s Primary Research Appraisal Tool). The Enhancing Transparency in Reporting the Synthesis of Qualitative Research Statement was used to strengthen the completeness of reporting. RESULTS: Fifteen studies met inclusion criteria and quality appraisal guidelines, however, most did not identify or relate their findings to theory. Through meta-synthesis, five themes emerged: facing a life-changing situation, experiencing changes and their impact, striving to manage and adjust to changes, coping with masculinity, and anticipating the future. CONCLUSIONS: After prostatectomy, men experienced physical, psychological, and social changes. Many men are physically and psychologically ill-prepared and suffer from lack of information and support. Health care providers need to be sensitive to men's needs including perceptions of masculinity, realize the importance of support as an essential component of men's adaptation post-prostatectomy, and provide comprehensive and individualized patient-centered interventions. Future studies need to use rigorous research methods, clearly identify methodological approaches, and consider employing or developing theory.

Expert commentary

On hearing the word cancer, most patients naturally focus on the urgent need for treatment. The potential complications and life-changing consequences of the treatment may not be high on their list of priorities, and unfortunately, this may be the same for their healthcare team.

It is clear that radical prostatectomy can have a significant negative impact physically and psychosocially. Indeed, men may regret their decision, and it is incumbent on treating units to provide holistic support throughout their journey.

Living well with cancer can be aided by utilising survivorship programmes, and these should be offered routinely in urology centres.

Trevor J Dorkin, Consultant Urological Surgeon, Newcastle Urology, The Freeman Hospital

Expert commentary

Before surgery, most men's main concern is with their cancer and fear of its recurrence. The possible risks of the surgical procedure assume a lesser importance.

After prostatectomy, incontinence or erectile dysfunction and the effect of these on relationships and social activities may then become a reality. It is at this stage that men may find difficulty coping with these life-changing side effects, both from the physical and the psychological viewpoint.

It would, therefore, be invaluable if the clinical practice could include individual support to help men cope with these problems and thus improve their quality of life.

Mr Derek Price, Prostate Patient Advocate