Prostate cancer is the most common cancer in men in Australia, with high survival rates. As a result, many men are living with the consequences of the disease and its treatment, which can affect urinary, sexual, and bowel function as well as a man's self-image and intimate relationships. Whilst most of the literature describes the frequency of treatment side effects, little is known about how these side-effects impact on the men's intimate relationships and their self-perception. Natural hesitancy to confront sexual issues and a lack of appropriate resources commonly inhibit the appropriate management of post-treatment difficulties which many prostate cancer survivors endure. The aim of this study was to explore experiences of men with prostate cancer; focusing on the impact of the disease and its management on sexuality, body image, self-esteem, personal relationships, overall quality of life and unmet needs.
The study used qualitative and quantitative methodology, with 24 men, recruited via the Concord Hospital Prostate Cancer Support group newsletter. Twenty-four men completed standardized measures assessing sexual functioning, sexual self-schema, quality of life, urinary, bowel and hormonal symptoms, psychological wellbeing, and unmet needs. Of those 24 men, 21 participated in face-to-face semi-structured interviews, which were transcribed and subjected to content analysis.
The participants scored lower on quality of life issues relating to urinary, sexual and hormonal symptoms, and on perception of their sexual relationship and self-esteem, compared to a prostate normative sample. The majority of men (71%) were not able to have erections, over one third (38%) reported they were not satisfied with their sexual life (38%) with a further 33% reporting being “only a little bit or somewhat” satisfied. Half (50%) the men reported they were satisfied with their relationship in general. Men indicated significant changes in their self-image, with 77% reporting that they no longer felt like a "whole man". Almost half of the participants reported unmet needs related to sexual feelings/relationships (48%), and just over a quarter reported unmet needs related to information about changes in sexual relationships (43%). One third of men (33%) expressed a need for psychological help related to feeling down or depressed.
The qualitative analysis of the participants’ interviews revealed the following three themes which contributed to the understanding of the men’s post-treatment psychosexual adjustment: i) Changes in self-identity, ii) Communication and support, and iii) Adjustment process. Within the overall “Change in Self-Identity” theme there were five sub-themes, related to
Physical, Self-Perception, Emotional, Existential and Relationship changes. The “Communication and support” theme comprised of six sub-themes: communication and support between men and their Doctor, Partner, Other Health Professionals, Other Men with Prostate Cancer and Support Groups, as well as Information Needs and Recommendations for the Future. Finally, the “Adjustment Process” theme included the sub-themes of Lifestyle Change, Coping Strategies, and Striving for Acceptance & Integration.
As a consequence of their treatment for prostate cancer, men in the current study reported side effects of erectile dysfunction, urinary incontinence, urine leakage during arousal or at orgasm, reduced penile size, lack of or reduced ejaculate, change in intensity of orgasm, reduced desire and pain. Physical side effects impacted on men’s identity, their sexual relationship, lifestyle, day-to-day life, overall relationships and their overall quality of life. The study revealed the importance of adequate patient-health professional communication in facilitating post-treatment adjustment.
Findings from this study have a number of important implications. Health professionals working in this setting need to ensure patients and partners are provided with appropriate amounts of information in ways that will best ensure their understanding of the issues, especially during the decision-making process. The information about side-effects of prostate cancer treatment needs to be communicated within a broader psycho-sexual context rather than the current focus on urinary or erectile dysfunction. Patients would benefit from access to multidisciplinary sources of care, including prostate nurse-led psycho-educational sessions, psychological care as well as access to support groups.
It is anticipated that the obtained findings will inform the development of a psycho-educational intervention/tool to be used as a resource for men/couples during the post-treatment recovery and rehabilitation. It is hoped that provision of such an intervention early in the disease trajectory will lead to improved quality of care and quality of life of men affected by prostate cancer and their partners/families.