Abstract
Prostate cancer invariably impacts men’s health and well-being and remains the most common male cancer. This study explored how men with prostate cancer who were scheduled for radical prostatectomy made sense of their cancer diagnosis. A narrative analysis was performed of 18 men’s life stories at three different time points: preoperatively (n = 13), three months postoperatively (n = 10), and six to nine months postoperatively (n = 11). In total, 34 interviews were undertaken in Ireland to examine how men talked over time. Riessman’s narrative analytic technique and structural and thematic analysis were used as the analytic framework. The following four themes emerged which reflected how men made sense of their prostate cancer diagnosis: seeking coherence, connecting through collective masculinity, rejecting a survivorship identity, and positioning prostate cancer. Seeking coherence was evident in the preoperative phase whilst the other three themes emerged in both postoperative time points. Whilst the experience of prostate cancer was an individualised one, masculine identity and narrative positioning underpinned every aspect of men’s accounts. Subscription to and expression of a masculine identity underpinned all aspects of the men’s narratives. In conclusion, it is recommended that care interventions targeted towards meeting the unmet needs of this group account for this highly masculinised experience. Appropriately sequenced information and support which is gender sensitive to individualised and collective identity expression is crucial. Acknowledgment of masculinised language is also recommended for men’s individual and collective recovery from this life-altering experience.
1. Introduction
Prostate cancer (PC) is the most common form of noncutaneous cancer among men worldwide. It represents the second leading cause of male cancer death globally [1]. The incidence in Ireland is expected to double over the next 20 years [2, 3] with a cumulative lifetime risk is one in eight men in Ireland [1]. Currently, about 28% of men diagnosed with prostate cancer in Ireland undergo a Radical Prostatectomy (RP) within 1 year of diagnosis [4]. RP remains one of the main treatment strategies for all stages of nonmetastatic prostate cancer. For low-risk diseases, active surveillance (AS) remains the preferred option; however, RP is an option for patients who decline AS. For intermediate-risk disease, RP is a curative treatment for patients with >10 years of life expectancy, while for high-risk disease RP is a consideration, as part of a potential multimodal approach. RP can be performed with open, laparoscopic, or robotic techniques.
There is no doubt that the challenges faced by men experiencing PC are multifaceted. The impact on masculinity and masculine identity and its intertwined nature on the physical and psychological functional outcomes are also recognised [5–8]. Being a man and embodying all the practices that accompany that in the modern world is implicated in men’s poorer health outcomes internationally [9]. However, whilst biological, psychological, and social challenges are reasonably well documented [5–8], little is known about how men talk and feel about these experiences. Achieving the best outcomes from the patient’s perspective is now considered the primary aim of treatment. However, although recent progress has been made in services internationally, supportive care for men remains lacking [10, 11].
Stories and narratives underpin every aspect of life and offer a useful interface between societal reality and reality as it is interpreted by individuals. A turn toward a narrative understanding of patients can be traced back to the early work of Saunders [12] with more recent work suggesting a greater interest amongst healthcare providers to attend to the stories of others to enhance their care responses (e.g., [13–15]. A diagnosis of prostate cancer and the accompanying trajectory that follows such unexpected illness can be likened to a “biographical disruption” [16, 17] where a life plan becomes radically altered through in this instance a cancer diagnosis on what is usually a relatively healthy man, and this man has to navigate an unexpected new pathway in life. The resulting “precarious selfhood” often results in multiple conflicting accounts in an effort to make sense of a cancer diagnosis [18] The fact that prostate cancer is unique to males, coupled with the location and function of the prostate, renders prostate cancer a highly masculinised experience.
Intimate citizenship relates to the way individuals navigate the intimate aspects of their lives within the public sphere [19]. This concept has clear relevance for men experiencing PC as aspects of their private functions (via their diagnosis) become invariably public through exposure to doctors, families, and workplaces, where they articulate their experiences and understanding from a masculine perspective. This study was particularly aimed at exploring how men navigate their identity over three-time points through the prostate cancer experience.
2. Methods
This study utilised a qualitative narrative methodology to explore key areas of concern relating to men’s identity and survivorship postradical prostatectomy. An overview of participants can be found in Table 1 below.
3. Participants
Participants were recruited across general urology clinics, rapid access prostate clinic, and preoperative assessment clinics of a tertiary hospital in Ireland Dublin. The three key time periods of this study were preoperatively, three months postsurgery (postop), and up to nine months postsurgery (postop). A minimum of ten interviews per time period were undertaken in each time period. Depending on the point of recruitment, men were invited to participate in subsequent interview time points. Some men participated more than once. In total 34 interviews were completed with 18 men.
3.1. Data Collection
All data were collected by the project researcher using an open-ended biographical interviewing technique whereby participants responded to a single open-ended question to elicit men to talk about all the events and experiences that were important to them at that particular life point [20]. The interview duration ranged between 40 and 60 minutes.
3.2. Data Analysis
Data analysis was informed by Riessman’s thematic and structural narrative analytic technique (2008). Biographical disruption was identified as the point of receiving the diagnosis of PC and did not inform the analytic process. The thematic narrative analysis focussed on what was told and the structural narrative analysis examined how the stories were told and the context in which these stories are embedded. NVivo Version 13 was used to support qualitative data analysis. A process of cross-comparison of thematic and structural findings across all participant narratives and member checking of these themes was undertaken. The concept of intimate citizenship [19] and how public and private spheres overlap within the PC experience informed the analytic process. The findings presented below represent the outcome of a cross-case analysis of narrative positioning postcancer diagnosis.
4. Results
Narrative positioning was underpinned by a strong subscription to masculine identity in all 34 interviews. This study found that seeking coherence, connecting through collective masculinity, rejecting a survivorship identity, and positioning prostate cancer were four narrative strategies men used to make sense of their prostate cancer experience. The seven men who participated in all three phases of the study expressed the same thematic pattern as the eleven men who participated in single-phase interviews with no evidence of their thoughts changing in relation to masculine identity. This suggests a strong commonality of narrative strategies throughout the cohort. These are further discussed below.
4.1. Seeking Coherence—“I Don’t Know If There’s Cancer in the Family”
The first and most important theme in men’s initial stage of talking about their diagnosis was to interpret their cancer in relation to their family history and/or age. Family history of prostate cancer specifically also served to help men understand the trajectory of their cancer, in some cases helping them to see that a return to normality is possible and if their private experiences had resonance with a wider collective.
“My father had prostate cancer. That was his first cancer…Then he went and he got non-Hodgkin’s. Then he went and got lung cancer…. then my mother had breast cancer. Yeah. Then my older brother he had leukaemia, years ago. So, there’s a there’s a fair old bit of it in the family…one of my uncles has bowel cancer.” (Charles, Pre-Op Interview).
Having a family history of prostate cancer also proved helpful in helping men understand their cancer trajectory as Nicholas indicates below.
“My brother had the very same thing [prostate cancer] ...He’s fine...I find that helpful to see him back now and looking well, you know what I mean. And back working…he does taxi driving… His prostate’s no problem…my wife said it to me…you’d have a far better chance… you’re twice as fit as him” (Nicholas, Pre-Op Interview).
John voiced difficulty in making sense of the diagnosis given that he had no family history.
“It’s been a very struggle for me because nobody ever had cancer in my family. Nobody ever had it.” (John, Pre-Op Interview).
Another narrative positioning tool used by the men in the study related to their allegiance to other men as they navigated their own cancer diagnosis.
4.2. Connecting through Collective Masculinity—“I Would Kind of Advise All Men…to Go Get a Test”
Many participants indicated that through their experiences, they had encouraged other men to have their prostate checked or had decided to become involved in some form of advocacy with regard to encouraging prostate cancer awareness. This suggests a desire to have a sense of coherence with masculinity as a collective [21]. Their experiences with prostate cancer, in particular their lack of awareness of symptoms prior to their own diagnosis, and the perceived ease with which prostate cancer can be treated if caught at an early stage motivated them to engage in such action. There was a prevailing sense that they were lucky that their own cancer was “caught,” and that greater awareness was needed to ensure that other men were also diagnosed at an early stage. Most men seemed to engage in local advocacy, encouraging family and friends to get themselves checked for prostate cancer.
“I would kind of advise all men especially African men if they hit 40 to go and get a test because there wasn’t any symptoms at all you know and I kind of advised my brothers to go to the doctor and get their, check the PSA, everything” (John, 3 months Post-Op).
“There was one particular man he’s a friend of mine he’s 74…I said…“I was in hospital I had the prostate operation”…I said “Yeah, did you ever go and get tested?” he said “No.” I said, “Did the doctor never send you for a prostate [cancer test],” says I, … “No” he says. “Well, I think you should.” “Jesus,” he said ‘You’re worrying me now… I said, “No I’m not worrying you” I said, “I just think it’s essential” I said, “You should go”….’ (Simon, 3 months Post-Op).
Evan, through his job, had already been involved in some advocacy work and highlighted that it was difficult to encourage men to get involved.
“maybe we should be getting more [men checked] …. I don’t know, who maybe the local doctor [could help] but the problem is getting the men in. They’re fuckers they really are…” (Evan, 3 months Post-Op).
For some men, advocacy took the form of advising or supporting their friends or family members who had received prostate cancer diagnoses. They offered advice about urinary incontinence and sexual dysfunction and encouraged them to stay positive.
“I’ve had two friends of mine since actually who’ve been diagnosed with prostate cancer. I suppose I am on the blower [phone] with them…in “How are you? How are things?”…I suppose I’m becoming an advocate maybe a little bit.” (Paul, 3 months Post-Op).
Several of the men also offered to speak to other men who were going forward for surgery, to offer the benefit of their experience and any advice or information that they could.
“If someone was going ahead with the operation that if they wanted to talk, I’d be quite willing to kind of come in…and talk to them.…” (Colin, 9 months Post-Op).
The following narrative strategy relates to men’s identity positioning as cancer survivors.
4.3. “I’ve Had Cancer and Survived…You Get a Bit Embarrassed”—Rejecting a Survivorship Identity
What was notable in the study was the participants’ rejection of a survivorship identity. Men in this study felt that identity as a cancer survivor was an illegitimate one given their relative wellness. While most men did not make explicit reference to the notion of survivorship, those men who did were reluctant to identify with it. Note the hesitancy in the language used below.
“…. When you go away and you think I’ve prostate cancer I survived I’ve, I’ve….it becomes a bit, you get a bit embarrassed…because when you categorize cancer into its into its various guises, I’m very lucky it was caught early I’m fine, but I still had cancer. But compared to somebody who has had chemotherapy lost their hair lost weight… their experience has been a lot more traumatic than mine but yet we still share the same cancer story. Does that make sense?.....I felt a bit embarrassed given the fact that yeah, I’ve had cancer and I’ve survived it but Jesus you’re, you’re in a worse situation than I am. That’s one of the things I felt.” (Gavin, 3 months Post-Op).
Until he found an example of the prostate cancer experience that he could relate to James reported feeling guilty seeing adverts in which other cancer survivors were depicted, as he did not believe his experience compared to that of a child losing their hair, for example.
“…every other ad on daytime TV… was a little kid with no hair–cancer ads. And I’m sitting there thinking cancer survivor, cancer this, and I thought well that’s me. Effectively I have survived at this particular moment in time...I did feel guilty watching those ads because I thought well that’s not me is it really?” (James, 3 months Post-Op).
James also explicitly rejected the application of the concept of survivorship to his experience, suggesting that survivorship conjured up images of the challenge posed by illness. In rejecting his identity as a “survivor” (because he did not have to fight) he says.
“I don’t really feel like that there was anything to beat… guys who have been diagnosed with lung cancer…they’ve got to fight the whole thing…and people are raising money for them. I was never in any pain or anything (makes whipping noise) last May and now it’s not there and I’m here and I’m great.” (James, 3 months Post-Op).
Another key means by which men made sense of their cancer diagnosis and identity was by positioning it against other cancers.
4.4. “Atleast It’s Not a Bad Cancer…?”—Positioning Prostate Cancer
Many of the men referred to the status of prostate cancer by comparison to other cancers when making sense of their life stories. Some men approved of this way of thinking about prostate cancer, whereas others rejected it as serving to minimise the importance of their experience. For some men, it brought comfort to think about prostate cancer as less serious, and thus more manageable and survivable, than other cancers. Paul said that “If there was a cancer that I could pick it would be that one (prostate).” (Paul, 9 months postop), implying that prostate cancer is, relatively speaking, good cancer to get. Whilst Paul continued in stating, that prostate cancer may be a relative “easy cancer,” focussing only on the treatment neglects the difficulties men may have.
“It’s not just an easy cancer it’s…the mental side of it that and I think the numbers show, don’t they? it’s the highest suicide rate of all cancers is prostate.” (Paul, Pre-Op Interview).
Things seemed to evolve somewhat at the 3 months postsurgery stage where penile function (and issues) become a concern for several men.
“…and then one of them…got up my nose [saying]…one of their sayings was “if you’re going to get cancer that’s the one to get you know.” And I said, “no it’s cancer you know, and I will agree there’s probably more men now recovering from it, but I said there is stuff related to it I said it’s not that it’s without consequence… it can affect the man’s manhood” (Evan, 3 months Post-Op).
Again, at nine months postsurgery, Evan was concerned that the importance of prostate cancer was minimised by comparison to other cancers. He seemed to seek to draw an equivalence between prostate cancer and other cancers.
“Em, but there’s still a slight attitude about prostate cancer like from some people that it’s that it’s easy looked after now nowadays you know that’s so that’s a slight bit annoying that it’s put down the pecking order of a cancer you know by some…people. So, I don’t I don’t know if you have found that from somebody else. It’s a strange one like because as I said before no cancer is good to have. (Evan, 9 months Post-Op).
Evidence of the private experience of cancer being positioned within the wider discourse surrounding a cancer diagnosis was articulated by all men in the study. Each of the four themes is discussed in more detail as follows.
5. Discussion
This study highlights that men’s sense-making processes in relation to a prostate cancer diagnosis and a planned RP are inextricably linked to their allegiance to a masculine identity and norms associated with masculinity [9]. Because of the inextricable link between masculinity and prostate cancer, being diagnosed with prostate cancer invariably challenges men to examine their own masculinity whilst dealing with multiple conflicting feelings regarding the potential loss of normal bodily function such as continence and erectile function, and the impact this would have on relationships. These findings resonate with other narrative studies which highlight how men “muddle through” multiple challenges to their masculinity [22]. Seeking coherence, connecting through collective masculinity, rejecting a survivorship identity, and positioning prostate cancer were four narrative strategies men used to make sense of their PC diagnosis and subsequent surgery. Although the psychological impact of a cancer diagnosis is well recognised, men’s sense-making processes reflect what Plage [23] terms the nuances of cancer survivorship where socio-cultural constructs (such as masculinities) challenge both personal and collective identities. Men’s articulations of trying for resonance within their community, age, and sex could be comparable with striving for an overall sense of coherence [24, 25]. It also reflects a sense of narrative coherence, which is integral to the sense-making process and rationalising of the cancer experience [22, 26]. Though some authors would argue that the contrary also can occur [18, 23], we suggest that the men in this study had coherence to their narratives due to their alignment with a masculine identity [27].
Connecting through collective masculinity reflected men’s desire to align with a community to strengthen a sense of personal belonging. Loss of connection has been identified as a source of psychological distress (e.g., [28] whilst benefits of peer collective support mechanisms have been recognised in recent studies [29, 30].
Whilst prostate cancer directly influences men’s identities, rejection of the concept of a survivor is notable. The social construction of a person with cancer seemed to strongly influence how men viewed themselves through their life stories. The participants seemed very aware of the social construction and laden meanings in relation to having a cancer diagnosis. Prior to surgery, some men related their perception of the way others interpret cancer diagnosis and how this can be viewed quite fatalistically. Due to the proliferation of literature which imply “survivorship” as a solid concept within cancer care, this study identifies that not all who get cancer identify with a “cancer” identity, or if they do, it may be guilt laden. The men in this study felt that the notion of the survivor was tied up with challenge or hardship, and as they did not experience such hardships, they believed they were undeserving of the title. Such contradictions in survivorship identity and deviation from the dominant discourses regarding cancer survivorship have been identified previously (i.e., [18, 23] and are worth bearing in mind given the growth of the term “survivorship” in contemporary society. This seemed to relate to visible signs of having had cancer, such as hair loss, which men felt was accompanied, a “bad cancer” that was not something the men identified with. Similar discomfort with the label of “survivor” have been shown in studies of males with breast cancer [31] perhaps suggesting the survivor identity may have gendered connotations also.
Whilst psychosocial care is a central focus for nursing and healthcare-targeted interventions, the success of these is dependent on men’s perceptions of whether there is a conflict with a masculine resistance to frailty and illness. In other words, for health interventions and supports to be effective, consideration of the intersectionality of age, identity, sexuality, and subscription to masculine norms and values are essential prerequisites for a therapeutic care alliance [5]. Practical development of educational documentation, care pathways, and evidence-based health interventions for men also need to account for how men make sense of their PC story as it directly affects men’s sense of agency and engagement [32].
Gender relations refer to how women and men negotiate the world in terms of their social relationships and quite often, these socially constructed roles influence an individual’s decision to perform their gendered role in a particularised way [27, 33]. This is also an important consideration in healthcare settings, particularly where the majority of care providers (i.e., nurses) are female. The importance of having a narrative understanding of men experiencing PC cannot be overstated [13, 15], particularly where gender is concerned.
Plummer [34] suggests that there are “hierarchies of credibility” regarding stories with some only being able to be told in particular places. In the clinical setting with a lack of knowledge, there is a real risk of deference of men to the stronger medical narrative which invariably potentially holds a degree of power over recovery and survival. Equally, the predominance of women in healthcare systems calls for practitioners to remain mindful of gendered perspectives which may inhibit practitioners from understanding men’s care priorities and perspectives. The findings of this study inform the evidence base for survivorship intentions highlighted by Chambers et al. [32] in which health promotion, shared management, vigilance, and care coordination are combined together with a view to promoting men’s personal agency in PC care delivery. Listening to and respecting the perspectives of men offers real potential to make a difference in health and social care outcomes as the scope for men’s engagement with services is potentially enhanced and serves to compliment evidence generated through healthcare providers’ perspectives which highlight key care needs and deficits [35].
6. Conclusion
Men with a PC diagnosis experience a radical biographical disruption that forces their private worlds to interface with public services in a way they had not anticipated. This study identifies four ways in which men with PC make sense of their cancer diagnosis, positioning their identity and their cancer in a gendered way. Seeking coherence, connecting through collective masculinity, rejecting a survivorship identity, and positioning prostate cancer to represent narrative strategies men utilise to account for their PC diagnosis and recovery from RP. The instrumental role healthcare providers play in men’s healthcare and recovery cannot be understated. The findings of this study highlight a means by which healthcare providers can identify how men make sense of this highly masculinised experience and provide appropriate and responsive care. Only through understanding men’s sense making, identity positioning, and language, can a real sense of personal agency through gender-sensitive supportive care can be attained. Whilst clearly there are limitations to this study insofar as it is generated from men attending one tertiary hospital, the diversity of narratives and unifying patterns identified by participants shed new insights and compliments existing knowledge in this area. We hope that this paper prompts healthcare providers to examine their current practices and assumptions regarding survivorship, identity positioning, masculinity, and prostate cancer care provision in order to bring about vital best practices in gender-sensitive care provision for men.
Data Availability
The qualitative data used to support the findings of this study are restricted by the Mater Misericordiae University Hospital Institutional Review Board (ref. 1/378/2060) in order to protect the identity of the participants who shared their life stories and to comply with legal obligations under the law on Data Protection in Ireland.
Conflicts of Interest
The authors declare that there are no conflicts of interest regarding the publication of this paper.
Acknowledgments
The authors would like to thank all of the participants for sharing their life stories. The research team would also like to acknowledge the contribution of David Galvin who assisted with the grant application and ethical submission process. The authors would like to thank Suzanne Dempsey, Kieran O’Malley, and Nisha Soman for their assistance with aspects of the research study. This project was funded through a Service Improvement Innovation Funding Grant (2018 ref: SI36/2018) Nursing and Midwifery Practice Development Unit North, Ireland.