Life after prostate cancer treatment: a mixed methods study of the experiences of men with sexual dysfunction and their partners

One out of eight men will be diagnosed with prostate cancer during their lifetime, making the disease the most common non-skin cancer in the male population [1]. Although the majority of men will not die from prostate cancer, with survivorship as high as 93% for 15 years after diagnosis [1], treatment can have long-term side effects that greatly impact quality of life. Notably, sexual dysfunction is the most common side effect of both surgical removal of the prostate and radiation therapy [2]. While erectile dysfunction (ED) is not an immediate result of radiation therapy, a multicenter study has shown that sexual function in men who have undergone external beam radiation continues to decline to levels similar to men who had radical prostatectomy [3]. The incidence of ED has been reported as high as 79-88% after radical prostatectomy [4], despite advances in nerve sparing surgical techniques, and 67-72% after external beam radiation [5]. Helping men and their partners adjust to potential side effects such as sexual dysfunction following prostate cancer treatment is an important part of holistic care.

Erectile dysfunction impacts quality of life, with the majority of men reporting quality of life as either severely or moderately affected by ED [3, 6]. Several broad qualitative studies have been done to examine the lived experience of men with prostate cancer and have identified the challenges of sexual dysfunction after treatment in these men [7, 8], but little research was found looking at the lived experience of men specifically examining sexual dysfunction after prostate cancer treatment. Researchers examined the struggle towards the new normal with psychosexual adjustment after prostate cancer treatment in Australian men [7]. They found three main themes: Men were impacted by distressing sexual and urinary difficulties which negatively impacted self-perception and intimate relationships; receiving adequate information and support and good communication with providers and partners facilitated better adjustment; coming to terms with the side effects of prostate cancer treatment involved making lifestyle changes, coping and emotional struggles, while striving to accept/integrate the new normal self/life. Since an extensive Medline search did not reveal previous research to specifically examine the lived experience of men with sexual dysfunction after prostate cancer treatment and/or partners, the powerful descriptions from this study will provide new information on this phenomenon.

This study was carried out using an open-ended inquiry into men and their partners’ journeys with sexual dysfunction after prostate cancer treatment. Unlike many qualitative studies that interview with a semi-structured model [7, 14–17] or focus-group model [18], an open-ended question was used to learn the experiences of men and their partners. The majority of the men underwent surgical removal of the prostate (93%).The themes were salient and common across men and partners.

Men emphasized the importance of education and comprehensive information about sexual dysfunction throughout the course of prostate cancer treatment. Men described the need to be better informed about the negative sexual side effects, in order to proactively manage the sexual dysfunction consequences more easily. Yet, this reality was sometimes complicated by the fact that some men were not ready to learn about sexual side effects upon first hearing their cancer diagnosis, as M Ball, et al. [15] found in a study of men post rectal cancer treatment. Nonetheless, similar to findings by M Ball, et al. [15] and N Hanly, S Mireskandari and I Juraskova [7], we found that men insisted that more education at the outset and throughout the process would alleviate anxiety surrounding side effects. The men in our study articulated a clear need for comprehensive information before, during, and after prostate cancer treatment. Men who felt well-prepared and informed reported satisfaction with their care, while the men and partners who did not feel well prepared and informed were unhappy with the care they received.

Some men reported the importance of seeking out information on one’s own, through books, the internet, and support groups such as Us TOO International. They urged their fellow men and partners to do the same. This finding is echoed in KA Krumwiede and N Krumwiede [17] who reported no complaints about a lack of information. Rather, there was a proactive sense of men seeking out information on their own, particularly from men who had already gone through the treatment. This helped men with treatment choices, as it did in our study.

Not surprisingly, another major theme was the distress and frustration caused by sexual dysfunction, which included erectile dysfunction, changes in orgasm and ejaculate, and penile rehabilitation and its accompanying challenges. These frustrations affected both men and their partners and led to a whole range of negative feelings, most notably feeling like less of a man. However, men often assumed their partners were more upset over their sexual dysfunction than they actually were. Few partners reported being upset about their male partners’ sexual dysfunction, although they were aware of the men’s own dissatisfaction. Our study benefited by separately interviewing both men and their partners, as we were able to directly compare what men said to what their partners said. A small minority of men (n = 3) reported a more intense climax after surgery, which they found to be a positive experience.

The theme of negative emotions caused by sexual dysfunction is common in the literature [7, 8, 16–19]. In a quantitative study, T Zaider and colleagues [19] showed that regardless of level of sexual function, men who perceive a loss of masculinity following treatment are more likely to be distressed by ED. As most men tied their ED to “feeling like less of a man,” our study confirms this finding. Helping men deal with negative emotions, including grief and loss, is an important part of care.

The psychological ramifications of sexual dysfunction following prostate cancer treatment were articulated by many participants. The majority of men we spoke to reported psychological distress resulting from post-treatment sexual dysfunction, including depression, anxiety, and suicidal ideation. Some sought outside professional counseling or prostate cancer support groups to remedy their situation, and reported positive results in this endeavor. Other studies in the field report similar psychological ramifications as a result of sexual dysfunction [7, 8, 17, 18, 20]. Some men reported the same need to seek outside psychological help, since the primary care provider was not available for such services [7, 20]. N Hanly, S Mireskandari and I Juraskova [7] found not only that the men in their study struggled with depression, but this depression acted as a catalyst for psychological distress due to un-related issues, such as retirement. Offering comprehensive mental health services may be beyond the scope of practice for many urology clinics, yet having a strong referral network of mental health professionals and sexual therapists available will strengthen the care and provide a team-based approach.

The frustration and psychological suffering from sexual dysfunction led men to talk about the importance of support and understanding from others. Others included their partners, their families, and support groups like Us TOO International. Communication was at the heart of this support. Fueling the communication was a sense of openness. Neither communication nor openness was easily achieved. KA Krumwiede and N Krumwiede [17] uncovered the same theme, with a particular emphasis on the gratitude men felt for this support, especially from partners. N Hanly, S Mireskandari and I Juraskova [7], MW Kazer, J Harden, M Burke, MG Sanda, J Hardy and DE Bailey [14], CJ Nelson, S Lacey, J Kenowitz, H Pessin, E Shuk, AJ Roth and JP Mulhall [18] also found this theme. At the heart of this support and understanding from their partners, the men in our study spoke of the importance of intimacy. Romantic relationships are often driven by intimacy, but perhaps our more surprising finding is that many men said that after diagnosis, and especially after treatment, they grew closer to their partners. They were not romanticizing cancer, or wishing it upon others, but some men did say that their relationship to their partner is now better than it was prior to being diagnosed. The process and possibility for physical intimacy was an integral element of this post-treatment emotional intimacy, as men and their partners struggled to resume their sexual lives in the face of men’s post-treatment sexual dysfunction. However, the men reported greater concern with physical intimacy and sex than their partners. To maintain physical intimacy, many couples turned to non-penetrative sex or “outercourse,” such as oral sex, manual stimulation, handholding, and cuddling. N Hanly, S Mireskandari and I Juraskova [7], L Jakobsson, L Persson and P Lundqvist [21] found a similar deepened relationship with spouse. However, many partners in N Hanly, S Mireskandari and I Juraskova [7] were unwilling to engage in outercourse and less supportive with side effects from treatment. Partners that interviewed in our study were positive about outercourse and supportive with side effects from treatment.

Finally, we found a range of experiences with treatment and treatment provider satisfaction. Many men were angry at their providers for being overly optimistic about their post-treatment sexual and urinary functions. Others felt wronged by a lack of care or attention by their surgeons. Some of these men regretted their particular treatment or that they received treatment at all. These findings were echoed in CJ Nelson, S Lacey, J Kenowitz, H Pessin, E Shuk, AJ Roth and JP Mulhall [18]. On the other hand, some men in our study expressed no illusions about the role of the surgeon. The removal of the cancer was the primary job. Other care needs were met with a team based approach, including doctors, nurses, and support staff. Some men expressed deep gratitude towards their doctors and nurses for meeting with them for extended periods of time and answering all their questions and concerns with depth and patience. These patients felt well-informed about all side effects, including sexual side effects. N Hanly, S Mireskandari and I Juraskova [7] also found that men placed trust in doctors who provided ample info and answered lots of questions. MW Kazer, J Harden, M Burke, MG Sanda, J Hardy and DE Bailey [14] reported that men cited their confidence in the healthcare team as one of their reasons for a good recovery. Many men in our study were satisfied with the reality of being cancer-free, with or without sexual dysfunction. Even those men and partners who were frustrated with sexual dysfunction felt grateful to be free of prostate cancer. L Jakobsson, L Persson and P Lundqvist [21] found men expressed a similar gratitude for life, as well as anxiety about death. The health care team plays a crucial role in establishing expectations for care and recovery, and guiding patients and their partners through the journey.

Although this study involved a relatively large group of men and partners from across the country, there were limitations to this study. Men who had been treated for prostate cancer were invited to speak about their experience with sexual dysfunction from the clinic of the principal investigator and from prostate cancer support groups. Thus, men self-selected to participate in the study and their views may not represent the views of other men who did not self-select to participate. Although the sample size is fairly large for a qualitative study, this sample of men was rather homogeneous in race, socio-economic status, and education. The majority of the men in this study underwent surgical removal of the prostate and this is consistent with the most common treatment choice in America. Only 7% of the men in this study had radiation without surgery. Additionally, men were asked post-treatment to describe their pre-treatment sexual function which can lead to recall bias. Future research might include a more diverse sample of men including more men who underwent radiation therapy as a primary treatment. It might also be beneficial to collect information prior to and following treatment.

This study provides qualitative descriptions of men's and partners' journeys with sex and intimacy after prostate cancer treatment. Prostate cancer survivors and their partners report a need for accurate information about sexual side effects before, during, and after prostate cancer treatment. Men and their partners want providers to be sensitive to their sexuality and assist them in finding appropriate help to deal with sexual dysfunction. Men with sexual dysfunction after prostate cancer treatment report not only frustration with sexual problems, but depression and anxiety. Men identified support and understanding from partners, family, and prostate cancer support groups as an important aspect of the healing process. Involving and engaging partners when disseminating information about intimacy and sex after prostate cancer treatment is also important.

Understanding the impact of the anticipated side effects, like erectile dysfunction, and assisting patients with treating erectile dysfunction, is imperative to treatment satisfaction. Results of this study can be used by healthcare providers to improve care and promote intimacy for the man and his partner by providing comprehensive information about sexual issues throughout and after treatment and providing resources addressing sexual dysfunction and depression and anxiety.