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Everyday life after a radical prostatectomy – A qualitative study of men under 65 years of age
European Journal of Oncology Nursing, October 2017, Volume 30, Pages 107-112
The purpose of this study was to illuminate how men under 65 years of age experience their everyday Life one year or more after a radical prostatectomy for localised prostate cancer.
Interviews with 19 men aged under 65 were performed 12–18 months after their radical prostatectomy. The interviews were analysed using a thematic content analysis.
The analysis of the interviews revealed three categories of experiences: ‘Paying a price for survival’, ‘Feeling sidestepped’ and ‘Living with death lurking around the corner’. The side effects of the prostatectomy, such as sexual dysfunction, resulted in a changed self-image with a loss of manliness and reduced self-esteem. The men felt sidestepped and that they did not receive enough support. Prostate cancer was experienced as an embarrassing disease and the men felt their fundamental needs could not be openly discussed. Having cancer was associated with death. Thoughts about death faded away during recovery after the operation, but grew stronger in certain situations and reminded the men about their cancer. Returning to work and to previous activities helped them cope with the thoughts about death.
Our study suggests a need for improved rehabilitation after a radical prostatectomy, including more structured sexual rehabilitation, and involving the partner. Sharing the experiences of other men who have undergone prostate cancer surgery may also be beneficial.
We investigated the experience of prostate cancer surgery in men aged under 65 year.
The men felt they had paid a price for survival in the form of side effects, mainly sexual dysfunction.
They expressed a feeling of being sidestepped, related to lack of support and attention from the health care and the society.
Despite having a good prognosis, thoughts about death had become a part of the men’s life.
We identified needs for improved information and rehabilitation, also involving the partner.
Keywords: Prostate neoplasm, Radical prostatectomy, Qualitative research, Interview, Quality of life, Daily life, Coping.
Prostate cancer is one of the most common cancers among men in western countries and a major health problem ( Zhou et al., 2016 ). For example, the incidence in men younger than 55 years at diagnosis has increased from 2.3% in 1988–1991 to 9% in 2000–2003, and the mean age at diagnosis has decreased from 72 years in 1988 to 68 years in 2003 ( Lin et al., 2009 ). Surgical treatment of localised disease often leaves the men with erectile dysfunction (henceforth abbreviated ED) and sometimes with urinary incontinence ( Baker et al., 2016; Hugosson et al., 2011 ). The proportion of men with permanent postoperative urinary incontinence is reported to range from 0 to 87% ( Hugosson et al., 2011 ). The large variation is probably related to differences in the definition of continence and of the methods used for assessing continence. Severe urinary incontinence is reported in around 5% of men ( Hugosson et al., 2011 ). Long-term postoperative ED ranges from 13 to 89%, although the proportion of men with preoperative ED is often not reported. Whereas continence usually improves during the first year and erectile function may recover during at least two years postoperatively ( Hugosson et al., 2011 ), the overall quality of life does not change from baseline to one year postoperatively ( Acar et al., 2014 ).
Qualitative studies have reported that men who are recently diagnosed with localised prostate cancer initially focus on cure, and that the focus gradually turns to managing and coping with urinary incontinence and ED ( Burt et al., 2005; Eilat-Tsanani et al., 2013; Gannon et al., 2010 ; Hedestig et al., 2005; Iyigun et al., 2011; Milne et al., 2008; Petry et al., 2004; Walsh and Hegarty, 2010; Willener and Hantikainen, 2005 ). One to three years after surgery, ED commonly caused frustration among men, and they expressed that their sexual rehabilitation was not satisfactory ( Nelson et al., 2015 ). Urinary incontinence and ED have also been described as major sources of emotional tension affecting social interactions and sense of self-worth ( O'Shaughnessy and Laws, 2009 ). Gannon and co-workers reported that men might normalise their inability to have penetrative sex by viewing it in terms of the ageing process ( Gannon et al., 2010 ).
Although younger men aged <55 have been reported to have similar, or better, urinary and sexual function, with the exception of men with relationships who are at greater risk of severe worsening of sexual bother ( Wright et al., 2008 ), there is a lack of studies that focus on men under age 65 who have passed the initial postoperative period. We identified six interview studies that included men aged 41–81 years ( Burt et al., 2005; Eilat-Tsanani et al., 2013; Hedestig et al., 2005; Milne et al., 2008; Nelson et al., 2015; Walsh and Hegarty, 2010 ). The median age at the time of diagnosis of prostate cancer in Sweden is 69 years ( The National Board of Health and Welfare, 2015 ). Although age is not a prognostic factor per se in men with non-metastatic prostate cancer, younger men are more likely than older men to be diagnosed with localised disease and to be treated with radical prostatectomy, which is the most common treatment for men under age 65 ( Thorstensson et al., 2017 ).
Yet another rationale to focus on men under 65 years of age is that they fear cancer recurrence to a greater extent than their older counterparts ( van de Wal et al., 2016 ). Thus, our purpose was to illuminate how men under 65 years of age experience their everyday life one year or more after a radical prostatectomy for localised prostate cancer, when the remaining side effects are likely to be permanent.
The study was designed as a descriptive qualitative study with an inductive approach including interviews. This approach was chosen as it is recommended when the focus of the study is on full understanding of individual cases as well as of those combined and aggregated thematically ( Patton, 2002 ). Subsequently elicited data were analysed by hand using a thematic content analysis by Burnard et al. (2008) .
The inclusion criteria were men younger than 65 years old who, 12–18 months previously, had undergone an open or a robotic radical prostatectomy at either one of two hospitals in southern Sweden. Consecutively selected patients (n = 34) who fulfilled these inclusion criteria were asked to participate. Men who were not fluent in Swedish were excluded. Men eligible for the study were given written information about the study and a consent form by a nurse at their postoperative outpatient visit. The men were then contacted by telephone by one of the authors (A-KJ). After being given at least two weeks to consider the invitation to participate, the men responded by returning in a pre-addressed envelope the consent form with a notification of whether they agreed or declined to participate. Additional information about the study was given by telephone to those agreeing to participate. This resulted in 19 eligible participants aged 49–65 years (median 62 years; mean 60.7 years), of whom 14 had undergone open and 5 robotic radical prostatectomy. Fourteen were co-habiting with a partner and five were living alone. Sixteen had children and three had no children.
Semi-structured interviews were conducted 12–18 months postoperatively to allow recovery from short-term side effects. All interviews were conducted by the same author (A-KJ), a nurse with several years' experience of oncological nursing, in a location and at a time chosen by the participant: a secluded room at the urology department (n = 13), at the participant's home (n = 5) or at the participant's workplace (n = 1). The interviewer, who was wearing civilian clothes during the interviews, worked at a different department and, thus, had not been involved in the care of any of the men.
An interview guide was used, based on three main questions: ‘What do you think about your illness now?’, ‘How do you experience your everyday life today?’ and ‘Do you experience life as it was before surgery?’ with related follow-up questions: ‘Could you give an example?’ or ‘How did that affect you?’ The interview guide was tested and considered functional in a pilot interview, and was therefore used unchanged for the remaining 18 interviews. The pilot interview was included in the analysis. During the interviews, the men were encouraged to freely develop and expand on their answers. The interviews started with an opening question about the man's current life situation and the collection of data continued until no new data shed any further light on how men under 65 years of age experienced their everyday life one year or more after a radical prostatectomy for localised prostate cancer. All interviews were audio-recorded by agreement with the men and lasted 46–60 min.
2.3 Data analysis
The interviews were transcribed verbatim and analysed using thematic content analysis, following Burnard et al. (2008) . The analysis started with three of the authors (A-KJ, AW, KS) independently reading the transcripts for an open coding where irrelevant information was excluded from the analysis. In the second stage of the analysis, notes that had emerged from the data were compared and summarised on a whiteboard, and duplicates crossed out. The list of notes was worked through and categorised by two of the authors (AW, KS). In the final stage, the two authors discussed the categories, which were then condensed into three. Lastly the analysis was verified by the author who performed the interviews and participated in the open coding (A-KJ), and by yet another author (OB) for a third-party verification.
3 Ethical considerations
At the time of the interview, all men received oral information about the study so that the interviewer (A-KJ) could be certain about their willingness to participate. They were also informed that they could withdraw their consent at any time without giving any reason and that all data would be kept confidential and not handed over to the health care professionals. Subsequently, the participants were given information about whom to contact if the interview raised further questions or thoughts. The Ethical Review Board of the Health Sciences Centre at Lund University approved the study (Ref. No.: 94-09).
The analysis of the interviews revealed three categories of experiences: ‘Paying a price for survival’, ‘Feeling sidestepped’ and ‘Living with death lurking around the corner’. The categories are described below, with quotations from the interviews to support the confirmability of this categorisation.
4.1 Paying a price for survival
Although postoperative urinary incontinence was inconvenient to begin with, continence gradually improved and, with time, became less of a problem than the sexual dysfunction. The need to use pads and a feeling of being a child with a diaper when having a drink at a party was balanced by the relief of being rid of the cancer. Despite these issues, the men considered the price they had to pay for survival was acceptable, as they appreciated being alive more than they missed their previous level of functioning.
When the men were told that they had prostate cancer, their mind was immediately set on survival. This prevailed during the time when they were discussing their treatment options. After the radical prostatectomy, the focus gradually changed from mere survival to living with its consequences on an everyday basis, for example a changed self-image and loss of manliness: “The major problem is not the removal of the cancer but postoperatively suffering from incontinence and having problems with your sexual life for the rest of your life as well as its effect on the whole manhood” (Interview person, IP 15). Yet another man said: “I, I'm a woman, I think. No, but I'm not. No, I am what I am, I try to keep up the spark anyway … but it's just to keep up some joy” (IP 13). They also felt reduced self-esteem because of not fulfilling what they believed was expected of them as a partner: “My wife said ‘you don't get turned on by me anymore’ and how (swearing) fun is that? I try to explain to her that it’s not a matter of not getting turned on, but it's really difficult” (IP 13). Furthermore, they felt incapable or not needed anymore, or unable to get involved in new relations. The latter was described by two men as follows: “ I'm single, as I separated because my potency disappeared after surgery. I was not worthy anymore as I couldn't get an erection” (IP 7) and “I'm living alone and can't enter a new relationship because of my impotence” (IP 1).
The men who were in stable relationships and had found new ways of intimacy, rather than focusing on the loss of erection, managed the sexual side effects better: “ I can still use my hands, fingers, mouth …. and that is often actually what women prefer” (IP 10). For one man, for example, his relationship with his partner had transformed into a friendship, but considered this acceptable as his partner understood him and they could talk about their shared life: “ We are satisfied, of course it is a change when everything ends but we were prepared for it. It was rather undramatic, but there are never any initiatives to any sexual acts. You live more like cohabitants and in a marriage things fade anyway … No we are satisfied” (IP 8). Another couple had started sleeping in separate bedrooms, which they found acceptable: “I spend a lot of time in my boy room and it is almost a relief … my wife and I have a good time” (IP 11).
Various treatments for ED were used. While these were helpful for some of the men, others thought the loss of spontaneity reduced their desire and that the variety of different treatments that had to be tested and combined was too much of a hassle. For some men, this felt too demanding: “ Everything worked, except sex, that's all. I've been offered help with syringes but they didn't work, so I gave up. I'm not longing for a woman anymore, and I have accepted this now” (IP 2). Moreover, the treatments for ED were described as costly, which one of the men commented on like this: “ We are (swearing) ruined. I mean for 20 tablets it's 20 times. It's like buying a girl in Denmark” (IP 13). Some men described how they had to weigh the cost of treating ED against the household needs: “It is terribly expensive! It might put you down if you cannot afford it, especially if you're unemployed with limited resources” (IP 12).
4.2 Feeling sidestepped
The men felt that the disease was not prioritised by society or the health care system. This became clear in the interviews, during which they frequently compared prostate cancer with breast cancer, which was described as a better-known condition surrounded with fundraising and galas. This was in contrast to prostate cancer, which was described as an embarrassing disease, striking old men smelling of urine. They described how they had tried to contact celebrities diagnosed with prostate cancer to get them to be spokespersons for the illness, in order to raise its status to that of breast cancer: “ There are people who can beg for money for just about anything instead of doing fundraising for prostate cancer. It's too bad. It bothers me and makes me angry. It bothers me that it’s swept under the carpet. ” (IP 7).
They also missed being given the opportunity to talk with other men who had undergone a radical prostatectomy; the possibility to contact the Prostate Cancer Patients' Association was not considered enough: “I was informed about the patient's association but did not feel like calling them” (IP4). Telephone counselling by professionals specialised in prostate cancer was suggested, where they could ask questions and receive advice for sexual problems. Although all men were offered regular follow-up and could contact a cancer nurse specialist, they would prefer more scheduled follow-up visits. They felt as if no one at the hospital cared for them, now that their cancer had been removed and was thereby ‘fixed’: As one man described it: “You have to establish a good contact [with the hospital] and, if not, you feel altogether forgotten. ” (IP 13).
Interviewees felt that neither the media nor the health care providers paid much attention to prostate cancer, so the men had to keep their illness to themselves. This was a feeling strengthened by only being understood by men sharing their experience, so talking to friends and colleagues was not meaningful: “I don't talk so much about it, think it feels awkward …. Nor have I wanted this to be known by our friends, so we've kept it in the family” (IP 3). Consequently, the men experienced a general ignorance about prostate cancer. This included themselves, so when they were diagnosed, some read all the literature they could find. They wanted more attention to be devoted to prostate cancer and on the importance of early detection by prostatic specific antigen (PSA) testing. There was no understanding why men are not screened with PSA, when mammography screening is offered to all women: “It is hard to understand the debate about whether or not to screen for PSA, when in the US all men are screened” (IP 5).
4.3 Living with death lurking around the corner
The diagnosis of prostate cancer generally came without warning, as most men had no symptoms. To the men, it was not just any diagnosis but one that they associated with death. Although their immediate instinct was to survive by all means, their thoughts about the threat of death faded away during the recovery period after the radical prostatectomy. However, during and after contact with the hospital, and in other situations reminding them about their cancer, their thoughts about death grew as strong as when they were first diagnosed: “ When I'm asked questions or I read a newspaper article about cancer, it (thoughts about death) all comes back and then I get anxious and have problems with sleeping” (IP 6).
The men felt that life could no longer be taken for granted and they realised that they were not immortal. Their insight that life is fragile led to existential thoughts, which in turn led to a need to consider strategies for their future life. One strategy was, for example, to persuade themselves to appreciate life: “I try to live in the situation I am in. I have good enough quality of life. I'm not going to kill myself. Life is far too dear. It's just too beautiful. There are too many nice people out there” (IP 6). Another strategy for coping with existential thoughts was to return to work or to other previous activities: “Work has a great impact in life. It dispels your thoughts about the illness and makes you feel all healthy again” (IP 19). Family members as well as colleagues were also considered to be beneficial for the recovery process. As one man said, “You've got to have a … (swearing) will” (IP 8). For those men living as singles or without employment, recovering was more challenging: “I think a job is important. To have something to return to and feel needed. It speeds up the recovery” (IP 9).
The risk of recurrence was often on the men's mind, causing them worries and feelings of being vulnerable: “I'm not limited physically, but perhaps mentally. I know that if the cancer returns, I have only one lifeline left” (IP 5). Those who had a family were comforted by their family members sharing their feelings, whereas those who did not felt alone and deserted. Some men even referred to themselves as depressed: “I say that I don't think about death, but I do so every day – although just briefly” (IP 17). Attempts to suppress the feeling of being depressed included working, spending more time with their family, drinking alcohol, and trying to keep a positive attitude despite the negative aspects. Some found a relief in their faith or by having a constructive attitude to keep the negative in check: “I have a Christian faith and grew up in a Christian home. I strongly believe that there is something. Those who do not believe in anything they must feel hopeless. You feel a sense of faith in faith” (IP 12).
Our interviews with men about their experiences after a radical prostatectomy for localised prostate cancer enabled us to identify three categories of experiences: ‘Paying a price for survival’, ‘Feeling sidestepped’ and ‘Living with death lurking around the corner’. The perhaps most significant finding in this study was that men who have undergone a radical prostatectomy feel as if sexual dysfunction and other side effects were a price they had to pay for their survival. Previous research has shown that only 16% of all men undergoing a radical prostatectomy regain their preoperative level of erectile function ( Nelson et al., 2013a ), and that, if they do regain it, it may take up to two years ( Nelson et al., 2015 ). The men who participated in our study were interviewed 12–18 months postoperatively and so their sexual function may still improve.
Early and consistent pharmacological intervention is essential for a successful sexual rehabilitation ( Montorsi et al., 1997; Mulhall et al., 2005 ). The rehabilitation process should preferably start before the operation ( Kinsella et al., 2012 ). For penile injection therapy, the dropout rates in the first year range from 50% to 80% ( Nelson et al., 2013b; Weiss et al., 1994 ), but for those who can learn the technique and successfully incorporate the injections into their sex life the ED treatment may be experienced as ‘fantastic’ and a ‘life saver’ ( Nelson et al., 2015 ). It is important not only to inform men who have undergone a radical prostatectomy about these facts, but also to support them to overcome their hesitation and aversion ( Kinsella et al., 2012 ).
Although information about postoperative complications after a radical prostatectomy is routinely provided, the men in our study had not understood its extent. There is a difference between men's understanding of the information about the expected sexual dysfunction they receive before the operation, when their primary goals are to remove the cancer and to survive, and how they actually experience a life with ED afterwards ( Burt et al., 2005; Eilat-Tsanani et al., 2013 ). The men in our study reported that it was not until they had returned to their habitual everyday life that they began to consider the quality of their life, and that their sexual dysfunction became a prominent concern.
Health care professionals need be aware that men tend to keep their innermost thoughts about their changed sex life and feelings of being mutilated to themselves ( Hedestig et al., 2005 ). As it cannot be expected that men will raise these issues by themselves, health care professionals involved in sexual rehabilitation must actively ask about the men's sexual function after a radical prostatectomy. Information and discussions about erectile dysfunction are also stressed in the recommendations of ICSM (International Consultation for Sexual Medicine) (2015) ( Salonia et al. 2017a ). This is perhaps particularly important when rehabilitating men who do not have a partner, as our study showed that these men may feel unable to establish new relationships despite having been introduced to treatments for ED. Perhaps even more so as previous research has shown that men express great regret over the lack of information accessible to them for evaluating the risk and nature of long-term problems following prostatectomy ( O'Shaughnessy and Laws, 2009 ).
All men participating in our study found the different ED treatments to be generally difficult to manage. Moreover, they felt that the support they received was too focused on technical aspects of the ED treatment and did not help them with other dimensions of their sexual dysfunction, such as loss of intimacy, self-esteem, spontaneity and manliness, which left them with a feeling of being undeserving and incapable. Some of the men in our study expressed that they and their partner felt that the treatments were not worth trying as they led to loss of spontaneity. Similar findings have been reported in other studies ( Hedestig et al., 2005; Oliffe, 2005; Walsh and Hegarty, 2010; Willener and Hantikainen, 2005 ). For example, an Australian study reported that some men pursued ways to re-establish erectile function while simultaneously disclaiming their reliance on penetrative sex ( Oliffe, 2005 ). This enabled them to protect themselves from the failure that would occur if the treatments did not restore their erectile function. Previous research has shown that a holistic sexual rehabilitation that includes the partner and involves a clinical sexologist is better than isolated penile rehabilitation for improving the ability to have regular sexual activity and penetrative sex after radical prostatectomy ( Ljunggren and Ströberg, 2015; Wittman et al., 2015 ). Older men tend to refer to their age as a reason for not being so sexually active, whereas younger men still feel a need to perform as usual to satisfy their partner ( Oliffe, 2005 ). It would be interesting to examine whether the concept of the price paid for survival that we identified in our study is experienced more in younger than older men.
One surprising result was that urinary incontinence was not a predominant problem for the men in our study. Other studies elucidating men's experiences more than one year after a radical prostatectomy have found incontinence to be a major issue ( Burt et al., 2005; Hedestig et al., 2005; Walsh and Hegarty, 2010 ), whereas the men in our study talked about transient urinary incontinence in the early postoperative phase only. Even if some of the men in our study still used protective pads on a daily basis or on special occasions, this was less of an issue as they felt that they had tools to manage their urinary problems.
The men participating in our study experienced a general ignorance about prostate cancer, which made them feel sidestepped. Although all of the men had been informed about the local Prostate Cancer Patients' Association, none of them had contacted the association. Our participants expressed a wish to meet men with similar experiences, arranged by the health care service. A wish to be offered the opportunity to meet with other men who are, or have been, in the same situation, preferably in an individual rather than in a group setting, has been reported previously ( Hedestig et al., 2005; Butler et al., 2001 ). This was reported 12 years ago in another Swedish study ( Hedestig et al., 2005 ), and it was disappointing to find that this wish had still not been met for the men in our study. Arranging such meetings may be a comparatively easy way to improve the rehabilitation of this patient group.
To the men participating in our study, thoughts about death continued to be a part of their life, even after the cancer had been surgically removed. Previous research indicates that these thoughts may continue up to 15 years after surgery ( Walsh and Hegarty., 2010 ). Fear of cancer recurrence and substantial unmet needs years after end of treatment have also been reported, for instance in breast cancer survivors ( Bjørklund Ellegaard et al., 2017 ). Two strategies used by the participants in our study were to block out these thoughts by returning to work and to accept the support offered by family and friends. Despite these strategies, reduced self-esteem and depressive thoughts were common, and it may be assumed that men who are retired or who live as singles are a particularly vulnerable group. Our findings are in line with a study that showed that men who had been curatively treated for prostate cancer had more psychiatric out-patient visits and more often used anti-depressive drugs than age-matched controls ( Bill-Axelson et al., 2011 ). Increased risks of clinical depression and suicide in the first six months after a prostate cancer diagnosis have also been reported ( Carlsson et al., 2013 ). These findings suggest needs for better psycho-social support for men after a radical prostatectomy, and tools to help identify men with clinical depression and a potential risk of suicide.
6 Methodological considerations
Previous qualitative studies about men's experiences after a radical prostatectomy for localised prostate cancer included 17, 22, 10, 15, 19, 10, 8 and 11 men, respectively ( Burt et al., 2005; Eilat-Tsanani et al., 2013; Hedestig et al., 2005; Iyigun et al., 2011; Milne et al., 2008; Petry et al., 2004; Walsh and Hegarty, 2010; Willener and Hantikainen, 2005 ). Thus, we can argue that the sample size in our study (n = 19) corresponds well with sizes used in previous research about men's experiences after a radical prostatectomy for localised prostate cancer. However, the exclusion of men who were not fluent in Swedish is a limitation, as immigrants may have specific problems related to cultural differences and to difficulties with understanding information and to express their needs. To enhance the objectivity of the results all the interviews were conducted in Swedish, and quotations used in the results were translated into English by a professional translator and subsequently back-translated by yet another translator. The location of the interviews was decided by the participants; at the urology department, at the participant's home or workplace. Thus, the difference in location may have influenced the dependability of the interviews. However, it is hard to establish in what way as the interviews did not vary in length or depth depending on location.
In conclusion, the experience after radical prostatectomy among men under age 65 could be understood as a gradual change from a focus on mere survival to living with the consequences of the prostatectomy, which the men considered to be the price they had to pay for their survival. Although potentially cured, they felt fear of recurrence and felt that death was always lurking around the corner. The men experienced a need for support to prevent feelings of being sidestepped. Our study suggests a need for improved rehabilitation after a radical prostatectomy, including more structured sexual rehabilitation and involving the partner in pre- and postoperative information as well as education. Sharing experiences with other men who have undergone prostate cancer surgery may also be beneficial.
Thanks to Helsingborg Hospital, Department of Urology , Helsingborg and Skåne University Hospital, Department of Urology , Malmö, Sweden, for supporting the project.
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