Experiences and management of uncertainty following treatment for prostate cancer

Abstract

This article explores men’s experiences and management of uncertainty following treatment for prostate cancer. Qualitative interviews with 29 men, recruited from two prostate cancer support groups (PCSGs) in the Southeast of England, explored prostate cancer and post-treatment experiences of uncertainty. Data were analysed thematically using a constructivist grounded theory approach. Four common uncertainties were identified: (1) fear of cancer recurrence from continued biomedical monitoring following treatment; (2) fear of cancer recurrence from unexplained bodily symptoms; (3) concerns about post-treatment side effects; and (4) concern with having made the ‘right’ treatment choice. Three strategies for how men managed these uncertainties were also identified: (1) interpreting biomedical knowledge; (2) planning for future uncertain events; and (3) engaging with support groups that served as vigilance networks. Nuanced strategies of vigilance are identified, of reinterpreted pasts and imagined futures to manage uncertainties. These strategies temporally displace the uncertain present and are employed individually and communally as part of vigilance networks. This article adds to theoretical resources for understanding uncertainty management and evidences the chronicity of men’s post-treatment experiences of prostate cancer.

Keywords:

• Prostate
• cancer
• risk
• uncertainty
• vigilance

Introduction

Prostate cancer is the most common cancer in men in the UK and the survival rate is high compared with other cancers. There are a range of effective primary and secondary treatments available, which include removal of the prostate by surgery, different forms of radiotherapy, hormone therapy, chemotherapy, and non-treatment surveillance options, among others (Cancer Research, 2024a; 2024b; 2024c; Prostate Cancer UK, 2024c). Prostate cancer diagnosis and treatment rely on a range of biomedical tests, each generating their own scores that can heighten perceptions of risk (Dale et al., 2005; McDowell et al., 2009). In turn, with high survival rates there are more people living with uncertainties post-treatment, relating to concerns of lack of information, illness trajectory and possible future treatments, and with everyday life and coping (Shaha et al., 2008). Sociological research has primarily focussed on issues relating to diagnosis and treatment (Chapple and Ziebland, 2002; Broom, 2009; Kelly, 2009; Oliffe, 2009b), yet experiences following treatment have received less attention. Such experiences can be explored through a lens of uncertainty, a core facet of chronic illness experience (Charmaz, 2000; Royer, 2000). In this article I aim to explore men’s experiences and management of uncertainty following treatment for prostate cancer, to better understand men’s health behaviours in relation to perceived risks.

Risk, uncertainty, vigilance, and prostate cancer

A risk, according to common lay usage, is considered an event that may be dangerous, regardless of whether the probability of this event occurring can be predicted or not. However, over time the meanings associated with risk have shifted from the probabilities of different outcomes to meanings associated with negative connotations with danger (Douglas & Wildavsky, 1983), resulting in ‘risk’ being ‘used inconsistently in both medical science and lay discourse’ (Zinn, 2005, p. 1). This is problematic because meanings of risk may vary substantially between groups, such as where clinicians and women who had the Duchenne’s muscular dystrophy carrier gene had very different understandings of genetic risk, which had complex ramifications for women’s reproductive choices (Parsons & Atkinson’s, 1992; 1993; 2004).

Perceptions of risks are shaped by wider social circumstances: social and economic constraints, degree of habitual regularity of encountering a phenomenon (Bloor, 1995b; 1995b), familial ‘sphere of influence’ (Schutz & Helmut, 1970, cited in; Bloor, 1995b; 1995b), and biographical factors over the life course (Cox & McKellin, 1999; Parsons & Atkinson, 2004). Risks are not solely objective measures but are perceived and made sense of within social contexts which frame their meanings. This has implications for how they are subjectively experienced. Aronowitz (2009) describes how chronic disease is increasingly becoming indistinguishable from risk because of increasing clinical interventions, biomedical knowledge, and scale of population screening, with unsettling consequences for perceived risks of disease and sometimes inappropriate preventative surgeries and treatments.

While we live in cultures increasingly reliant on risk-based explanations and solutions to problems, including illness (Beck, 1992), risk is not the sole approach to framing experiences of uncertainty (Zinn, 2008). Zinn (2008) places uncertainty as the experience of primary importance, which is mediated by other factors, including risk but also a range of other factors: trust, hope, heuristics (learning based practice), and emotions, are all important for shaping health behaviours and decision-making in relation to illness. In view of this, a key facet for discerning between risk and uncertainty emerges, which is in their respective relationships to knowledge. Risk is a calculated quantifier for a limitation in knowledge, created from scientific method, whereas uncertainty is in this context an experience derived from gaps in knowledge and understanding that draws on different forms of knowledge and experience to attend to existential concerns in a process of sense or meaning making (Zinn, 2016).

Brown and de Graaf (2013) found that people with advanced cancers with poor prognoses sought to cope amid uncertainties by imagining different possible futures, drawing on risk information and hope to deal with the extreme uncertainties they were facing. Survivors of cancer also face experiential uncertainties. Managing uncertainties is an inherently social process that requires ‘balancing’, holding in concerns but also needing to talk about them with others (Seppola-Edvardsen et al., 2016). Roberts and Clarke (2009) found women struggled to plan for their futures following successful cancer treatment, where fears of cancer recurrence distorted and limited imagined projections for the future. In view of this, an emphasis is placed in this research on experiences of uncertainties and how uncertainties are managed by drawing on different resources, particularly risk information.

Men’s experiences of uncertainty following treatment for prostate cancer can be understood within a broader risk framework. The widespread introduction of the prostate-specific antigen (PSA) test for detecting prostate cancer in the UK in the 1980s has played a significant role in the rise of surveillance medicine for prostate cancer. Routine testing and screening policies for prostate cancer vary greatly worldwide (Van der Meer et al., 2012). While there is currently no screening for prostate cancer in the UK, a decision that is based on the best available clinical evidence to date (Chief Medical Officer, 2009; Public Health England, 2016), there has been historical debate about the introduction of a screening programme, with patient groups comprising a significant and vocal component advocating in favour of one (Faulkner, 2012). The current UK policy allows men to have a PSA test from their GP if they are over fifty years old and request one (Prostate Cancer UK, 2024b). Older men often have PSA checks routinely as part of health check-ups and following a rectal exam following reported symptoms an enlarged prostate. Further, and most important for this article, PSA tests play an important role in cancer surveillance after treatment. Removal or irradiation of the prostate does not remove all PSA from the body, and continuing monitoring for this antigen can be an indicator for cancer recurrence. Additionally, other biomedical knowledge generated through diagnostic processes include biopsy results (the Gleason score) and cancer staging, which also function as risk indicators that can inform men’s decision-making.

This context is important when considering the increasing trend towards a ‘healthicization’ within Western nations (Armstrong, 1995; Conrad, 1987; Zola, 1972), where possessing good health becomes a moral imperative. An increasing moralisation of health, particularly for those in later life, is likely to encourage participation and compliance with surveillance medicine for prostate cancer (Armstrong, 1995). This has significant implications for men’s experiences and their treatment or non-treatment decisions following a prostate cancer diagnosis. Some of the men in this research were drawn into a trajectory of being diagnosed by engaging with healthcare services, sometimes seeking to have a PSA test while at other times acquiescing to health surveillance, often without having presented with prostate cancer symptoms. In the absence of symptoms, diagnostic tests come to play a very important role for men in how they perceive their risk of being diagnosed with prostate cancer and with experiencing cancer recurrence and, in turn, in how they manage the uncertainties associated with the possibilities of the reoccurrence of the cancer (Bell & Kazanjian, 2011; Gillespie, 2012; Sulik, 2009).

Gillespie (2012) coined the term ‘measured vulnerability’ to characterise men’s interpretations of the PSA test, where men perceived test results as being an indicator of the degree to which they will get the disease rather than what the test actually indicates, namely the level of prostate-specific antigen in their blood. Gillespie (2012) found that PSA testing contributes to a perceived vulnerability to having prostate cancer in men prior to receiving a diagnosis, which results in increased feelings of anxiety and fear. This goes some way in explaining Oliffe’s (2006) findings that men subjected to diagnostic tests within a relatively short space of time strongly favoured opting for active treatments when abnormalities were detected. Furthermore, Bell and Kazanjian (2011) examined men’s perceptions of PSA testing following treatment for prostate cancer, finding that men continued to associate PSA levels with the presence or absence of cancer, for often extended periods of time after treatment where PSA testing routinely continued, often for periods of up to five years.

In this research I build upon the work of Gillespie (2012; 2015) and Bell and Kazanjian (2011) who have investigated men’s interpretations of the PSA test. Bell and Kazanjian’s (2011) study exploring men’s experiences following treatment drew on seven interviews and focussed on biomedical testing. This research examines men’s uncertainties in relation to prostate cancer more broadly, including but also beyond clinical testing, to understand men’s illness uncertainty experiences and management strategies more fully. This may include the use of risk information, such as biomedical test scores, other narrative devices such as framing personal accounts through temporal and thematic lenses, but also include using other methods of coping (Brown & de Graaf, 2013). The management of uncertainty fundamentally relies on two basic strategies: avoidance or vigilance (Weitz, 1989). Avoidance involves seeking to distance oneself from knowledge that would be unpleasant to learn, self-defining symptoms as unserious, and avoiding clinical encounters (Schneider & Conrad, 1983; Weitz, 1989). Vigilance is the opposite and involves seeking information and knowledge to understand their illness and find ways to most effectively deal with it and any future problems that might arise (Comaroff & Maguire, 1981; Schneider & Conrad, 1983; Weitz, 1989). Avoidance and vigilance offer a conceptual framework for better understanding uncertainty management in broader terms than just in relation to risk information.

In this article I examine the different uncertainties that men faced following treatment for prostate cancer and the strategies for managing uncertainties men employed following treatment for prostate cancer. More specifically I seek to answer the following research question: what uncertainties do men face following treatment for prostate cancer and how do they manage these?

Methodology

I developed a qualitative, open interviewing approach, using a topic guide to provide some commonality between interviews. The flexibility accommodated by open interviewing facilitated addressing sensitive topics, by being able to return to them over the course of the interview and approach them from different angles, with this generating rich, detailed data for exploring people’s reported experiences (Fielding & Thomas, 2008; Mason, 2002).

I followed a theoretical sampling approach, requiring that the men recruited had previously been treated for prostate cancer, which was based on the overall study aim of a doctoral research project in which I sought to understand the experiences of men following treatment for prostate cancer. Over 6 months, 29 men were recruited from two prostate cancer support groups (PCSGs) in the Southeast of England. The ethical approach was developed in accordance with university ethical guidelines and the study received favourable ethical opinion prior to commencing fieldwork from Royal Holloway University’s School of Law and Social Sciences’ ethics committee.

Interviews began with broad questions about employment, family life, and general health, to ease participants into the interview and to encourage them to talk freely and without much prompting (Oliffe & Mroz, 2005). The performance of hegemonic norms of masculinity can act as a barrier to data collection within such interviews (Schwalbe & Wolkomir, 2002). I sought to reduce any sense of competition with interviewees, adopting a respectful, deferential attitude by giving them space at the beginning of interviews to speak, without extensive probing or questioning of men’s accounts. Younger interviewers have been found to lack a more conversational style and be less willing to share their own experiences within interviews (Manderson et al., 2006) and I sought to address this by adopting a conversational and open approach to interviewing that included offering my own stories and reflections within interviews, sometimes in relation to myself or my father, or sometimes to my grandfather’s prostate cancer experiences, which inspired my research interest in this topic. This conversational approach seemed to encourage men to be active within interviews, to break away from the medical consultation model of health talk that men have often traditionally engaged in (Oliffe, 2009a).

The age range for the men interviewed was between 53–83 years, with more than 60 per cent of the sample being in their late sixties or early seventies. More than half the sample had undergone a radical prostatectomy as their primary treatment and just under half had radiotherapy either as a primary or secondary treatment. All the men interviewed identified as White British or White European. The interviews typically lasted between 1–1.5 hours.

Recruiting from support groups resulted in some limitations for addressing the study aims described in this article. More than half the sample had received primary treatment within the last five years at the point of interview, with the longest interval since primary treatment being fifteen years, although many interviewees received secondary prostate cancer treatments and other procedures for managing treatment side effects. This is an inherent limitation of this study, in part a consequence of the different aims of the broader doctoral research, described elsewhere, where foci concerned men’s masculinities, expertise, and management of long-term side effects (see Green, 2021b; 2021b; 2023). Consequently, collected data are subjective reflections on past events, relying on recollections framed through interviewees’ current situations, a key limitation of the study. Further, the available sample was highly homogenous in their demographic characteristics, and the generalisability of the findings are limited as a consequence. However, recruiting from PCSGs also afforded benefits. Participants were open to speaking about their experiences, frequently kept health records of their cancer experiences (often directly referred to aid recollection and narratives by participants during interviews), and by virtue of regularly attending PCSGs, their accounts were often rehearsed through repeated telling in these spaces.

A thematic approach to coding was undertaken, where data collection and analysis led to the identification of common themes that guided later interviews and contributed to a data-driven analytical process. The construction of data is understood as a joint process of meaning making, and I interpreted and re-interpreted my data over the course of the research. Interpretation and analysis of data is accordingly ongoing throughout data collection, as part of a reflexive analytical process (Charmaz, 2014). Below I present my participants’ accounts using pseudonyms, providing their age at point of interview and abbreviations for their treatment(s) (see Appendix 1).

Findings

Common uncertainties following treatment for prostate cancer

Four common uncertainties were observed in men’s accounts of their experiences following treatment for prostate cancer: (1) fear of cancer recurrence that came from continued PSA testing for monitoring purposes following treatment; (2) unexplained bodily symptoms interpreted as possible signs of cancer recurring; (3) iatrogenic side effects experienced following prostate cancer treatment; (4) questions over having made the ‘right’ choice in opting to treat their prostate cancer. Each of these uncertainties are described in turn.

Fear of cancer recurrence: Interpreting biomedical knowledge

PSA testing is one of the few and most reliable forms of biomedical knowledge available to men with prostate cancer and therefore plays a crucial role both pre- and especially post-treatment (Bell & Kazanjian, 2011). One problematic aspect of the PSA test, however, is that there is no zero value (McLeod, 2005), which Mark also characterised below.

Mark

They never give you zero … I’m due to have another blood test this time next week, and see the oncologist in two weeks’ time, and fingers crossed it’s still 0.003, if it’s not its bad news (64, RP, RTwHT)

This has led men to experience their prostate cancer survivorship by degree, because of PSA biomarkers and an absence of a zero value (Bell & Kazanjian, 2011, p. 192). Gillespie (2012) found that men who perceived themselves to be ‘at risk’ would set thresholds for their PSA levels, which, if they were exceeded, would prompt them to take action. Small fluctuations in PSA levels over time following treatment for prostate cancer can therefore be sources of uncertainty, for, as Bell and Kazanjian (2011) found, post-treatment PSA levels were frequently understood by the men in their study as indicators of a recurrence of cancer.

Another concern for men in deciding between treatment and non-treatment was apparent in the kind of language used in the risk information that men commonly received beyond the PSA test. Geoff and Algernon described the phrasing that was used by their consultants to describe their Gleason score from their biopsies.

Geoff

I then had a biopsy done and that showed that I had aggressive prostate cancer, Gleason 9, but at that stage it appeared in only three out of the 11 samples that were taken, so it was deemed that it was early stage but an aggressive cancer (63, RP, RT, HT)

Algernon

I had a PSA of about 12, 12.4 or something, and I had a Gleason score which seems to be the main determinant, of 8, which signifies aggressive (73, RT, Researcher)

The term ‘aggressive’ accompanying these score descriptions has connotations of physical threat. Perceived in this way, a decision to not opt for treatment to remove or destroy the cancer could be viewed as irresponsible and dangerous to a person’s health and therefore such language was likely to encourage men to opt for a treatment option to address this threat.

Fear of cancer recurrence: Interpreting bodily sensations

Fear of cancer recurrence was a commonly cited concern for men in this research. Interpreting bodily sensations following treatment for cancer could therefore be problematic for men, as Peter and Chris described:

Peter

One of the worst things of all with cancer, any cancer, is you don’t feel ill. And, (for) lots of people cancer, of all descriptions, is discovered when it’s too late, because most cancers can be cured if you catch them early … luckily I saw blood in my urine, but I didn’t know it was cancer to start with, but I thought ‘that’s not right’ … there is this thing, and I’ve spoken to other people who’ve had cancer as well and got over it, whatever goes wrong with me, straight away I’m ‘well is it cancer?’, you just, you just can’t help feeling ‘oh no got, I’ve got a bad leg, oh god I’ve got cancer in my leg’ (72, RP, RTwHT)

Chris

We all have our occasional aches and pains and things like that, and you wonder has this got something to do with my prostate cancer? No (laughs) … it’s something completely different, and because I’ve been working hard in the garden or doing some decoration or something (73, RP)

Horlick-Jones (2011) has identified this same anxiety in his own experiences of being diagnosed with breast cancer. He recognised this anxiety not as an irrational fear but as a loss of what he calls ‘everyday health competence’, where regular routines for interpreting the body are called into question and second guessed. However, it is not sufficient to treat these men’s experiences as simply a loss of health competence resulting from treatment. Gillespie (2012) found that the lack of symptoms that often accompanied an ‘at risk’ status exacerbated the feeling of being ‘at risk’ and increased men’s dependence on PSA levels as an indicator of their risk level. Participants connected this to not being able to originally detect the cancer through bodily sensations prior to initial diagnosis. Therefore, fears of not being able to interpret their bodies following treatment for cancer could be compounded by feelings of not having interpreted their bodies correctly when they were first diagnosed with prostate cancer, with minor or no symptoms presenting. Loss of health competence for some of the men in this research, then, was not solely a result of cancer treatment but was seemingly compounded by the absence of bodily signs of cancer prior to treatment.

For this instance of uncertainty, the strategy of vigilance (Weitz, 1989), of seeking to acquire new knowledge to manage uncertainty, was not helpful and was indeed described as a hindrance. The drive of healthicization encourages men to monitor their bodily sensations to maintain their health and engage in vigilance to manage health problems (Gillespie, 2012). Consequently, for these men seeking to detect cancer recurrence, the experience of mundane, non-pathological everyday sensations leads to uncertainty and an increased feeling of vulnerability to cancer.

Treatment side effects

The participants described mostly experiencing either minor or no symptoms prior to their prostate cancer diagnosis, yet they often experienced side effects as a result of treatment. Onset of these side effects could bring new uncertainties, regarding how the severity of these side effects may change over time and whether side effects would dissipate or persist indefinitely.

Erectile dysfunction is a common treatment side effect. Jamie and Dan’s accounts illustrated the uncertainty of achieving sexual function following treatment and achievement was often contingent on undesirable accompanying treatments or actions.

Dan

It probably took about eighteen months before I had a reasonable, spontaneous erection and even now I use Cialis (66, RP)

Jamie

If I hold the base myself, firmly, I can have penetrative sex, but it’s not great, I don’t really want to be holding that (53, RARP)

Rectal bleeding is another common treatment side effect. A few of the men interviewed experienced some degree of rectal bleeding as a side effect from their radiotherapy treatment. However, the possibility of this occurring was not always clearly communicated by medical practitioners and its onset could cause concern and raise uncertainty as to whether this was a new problem or one related to the cancer. As Ian’s account illustrates, he had been left ‘hanging on’ in uncertainty until a diagnosis was confirmed.

Ian

Recently we were away on holiday in June on a cruise and I had a show of blood from the rectum … one came one day and then about three days later another one, but I’ve not had it before and I’ve not had it since, so he (Ian’s GP) seems to think it might be to do with radiotherapy, so I’m hanging on, hoping that’s what it is (78, RTwHT)

Urinary incontinence is another common treatment side effect. David’s continence had improved following his treatment but remained a concern for him, particularly for the future.

David

The thing which I do wonder about sometimes- some stages which is- I wouldn’t say I worry about it but is a concern, is long term continence, am I likely to- am I more susceptible to be incontinent, but again there’s not much that I can do about it (69, RARP)

Having previously experienced some of the worst effects of urinary incontinence, David was not only uncertain about whether his continence might worsen again in the future but also felt vulnerable to the condition now that he had already experienced it.

Making the ‘right’ choice

Treatment for prostate cancer rarely came without some sort of cost to quality of life. Bell and Kazanjian (2011) observed that, before receiving treatment, men are initially optimistic about removing their cancer and that being an end of their problems but are more resigned to the incurability of cancer and inevitability of possible cancer recurrence after treatment. In this research, the problems that some men faced following treatment led them to speculate as to whether they had made the ‘right choice’ in their choice of treatment, as Paul’s account below illustrates.

Paul

You’ve (the interviewer) touched on one of the questions I put to them (various medical practitioners), which was ‘if I had gone private when I knew there was something wrong, would you have recommended a different course of treatment to the one I’ve had through the NHS?’ and they’ve assured me not, and I’ve asked that question at a number of the support meetings, the group meetings, and- where other consultants have come along, not my own, to talk about prostate cancer but from another treatment path, it might be radical (prostatectomy) or that sort of thing, and they’ve all come up with very sorts of similar things (67, RTwHT)

That Paul returned to this question repeatedly with different medical practitioners demonstrates the degree of concern he had over this question, despite assurances from practitioners that affirmed his treatment decision.

Dan, meanwhile, had opted to have a radical prostatectomy and had very severe incontinence following this treatment. Here he describes his uncertainty about whether he made the right prostate cancer treatment decision, because of the severity of his incontinence he has been left with.

Dan

Someone did ask me, am I angry because I made the wrong decision.

Interviewer

You might regret it, possibly.

Dan

It’s a fault. I wouldn’t be incontinent. Um, you know, that’s something that isn’t going to get better. It’s always going to be there when I’m 80, 82, will I be capable of using a sphincter when I’m 82, those are really important things that I suppose worry me more about the future rather than thinking the cancer might come back. (66, RP)

Dan’s account was more forthright than other men’s accounts in going so far as to refer to his treatment choice as the ‘wrong decision’, even if he was referring to someone else who described it in those terms.

Management strategies for post-treatment uncertainties

In exploring accounts of how men managed post-treatment uncertainties, three distinct strategies emerged: (1) interpreting biomedical knowledge; (2) planning for future uncertain events; (3) engagement with support groups that served as vigilance networks. I describe each of these strategies in turn.

Reinterpreting biomedical knowledge

Reinterpreting biomedical knowledge is a strategy in response to the uncertainty men faced of whether they made the ‘right’ treatment choice. This strategy involved referring to previous events and biomedical knowledge that men had acquired in the past, which men used to justify that they had made the ‘right’ treatment choice. An example of this is evident in accounts men gave regarding what their surgeons told them about the degree of cancer that was present in their prostate when tested following surgical removal, as shown in Geoff’s account.

Geoff

The biopsy they did on the prostate when they take it out, they discovered that where they thought they got it early, the prostate was riddled, and had I not done anything at that point in time, by the following year, which is when I would have normally had my medical, it would have broken out and got into other areas, and probably I would have been dead in five years (63, RP, RT, HT)

Geoff’s account justified his treatment choice and shows a concern with having made the ‘right’ choice, thus implying a concern with possibly having made a wrong choice and being liable to experiences of shame or blame (Green, 2021b). Indeed, reinterpretation of biomedical knowledge could also be used to question treatment decisions, as Chris’ account demonstrates.

Chris

I’ve no reason to doubt the genuine comment, that the comment he (Chris’ consultant) made was genuine, because he got the report from the path(ology) lab, he knew what they’d said, and he just said ‘it was more extensive’, that could have been if there was a pin prick (of cancer) it could have been two pin pricks … but I’m not suggesting he was being dishonest, I was just being cynical (both laugh) (73, RP)

Onset of erectile dysfunction following Chris’ treatment led him to consider whether it would have been better to wait longer before having treatment. Instead of this biopsy information supporting his decision, Chris questioned whether his consultant was bending the truth to make Chris feel better about his decision to opt for treatment.

Further instances of this process of reinterpretation were evident regarding interpretations of events that occurred and knowledge that was acquired prior to treatment. Here, Alex reinterpreted his PSA test scores leading up to his treatment, understanding them differently ‘in hindsight’.

Alex

In hindsight, what I know now, I say to my friends, ‘what age are you?’ You know, if you’re under 60 and you’re getting any[where] near 3 (PSA score) get moving on it and if you’re over 60 and you’re, you know your past 3, same thing, get some action. (71, BT)

Following treatment, Paul and Charles further developed their understanding of prostate cancer and developed lay understandings for how cancer affects the nearby urinary system, as they describe here.

Paul

What I thought was just getting older was actually the prostate and me not realising and was thinking ‘oh I’m just getting older and things are getting slower’ (urine flow), but it wasn’t it was the prostate, because it presses on it (the urethra) (67, RTwHT)

Charles

I remember now that over the next sort of- over that four months before I had that operation the flow was getting slower and slower, so it was obviously beginning to encroach (referring to the cancer encroaching on his urine flow) (71, RARP)

In these instances, the bodily symptoms of prostate cancer that were experienced at the time were reinterpreted, with participants’ increased understanding of prostate cancer, as signs that their cancers were growing and threatening their levels of continence. These rationalisations used new biomedical knowledge to support their justifications of opting for treatment of their prostate cancer.

All of these examples are further evidence that when these men were identified as being ‘at risk’ of cancer but experienced no symptoms, their feeling of being ‘at risk’ were exacerbated and they come to rely more on biomedical knowledge (Gillespie, 2012).

Above I have shown the continuing importance of the PSA test for men in managing their uncertainty about cancer possibly recurring. Yet, for men who were uncertain about whether they made the ‘right’ choice in opting for treatment, there were no scientific tests available to conclusively assess whether this was the case. Instead, the men in this research had taken to reinterpreting the biomedical knowledge that they acquired shortly before they were diagnosed and afterwards. The men reinterpreted this knowledge with a new and different understanding of previously acquired knowledge, given that their own knowledge about prostate cancer had increased thanks to their own experiences of the illness, their own research, and their engagement with their PCSG. These behaviours were similar to those identified by Brown and de Graaf (2013), of cancer sufferers with uncertain futures who drew upon risk information, among other resources, to imagine different futures to help them manage their uncertainties about their futures. The same was true for the men in this research, who used the biomedical knowledge they had acquired to imagine different scenarios, both affirming and critical of their actions, to engage with uncertain past events to make sense of their current situations. Again, this demonstrates the importance for these men of both feeling, and being able to show, that they had made the ‘right’ choice in their treatment decision, which I interpret from the degree to which they re-examined and reconstructed their past actions.

Planning for future uncertain events

Reinterpreting biomedical knowledge has been identified as a practice that reconstructs past events to make sense of the present (Bell & Kazanjian, 2011). The second strategy I identified for managing uncertainty was oriented towards the future and concerned men’s accounts of the plans they had either conceived or enacted to minimise experiences of uncertainty regarding possible uncertain future events.

Joe described how his choice to have a pelvic sling inserted to improve his continence was in part informed by what possible future treatments he might have been required to have.

Interviewer

So is that a consideration that you may have had (to have an artificial urinary sphincter installed), had the pelvic sling not been so successful?

Joe

I would have considered that, in fact now I’ve got the sling, if it deteriorated then they apparently can do the (artificial urinary) sphincter as well, that’s one thing I did check, yeah because it doesn’t like, as the consultant put it ‘it doesn’t burn any bridges, so you can have the sphincter after this’ (67, RP)

Part of Joe’s choice of treatment involved knowing that he could always go a step further and have a more invasive treatment if his planned treatment failed. Furthermore, Joe stated that it was a comfort to know that if the sling deteriorated later, he would still be able to have the subsequent treatment, which minimised his uncertainty around that specific event occurring.

Lucas’ approach was similar to Joe’s, although it concerned a decision about a secondary prostate cancer treatment. Having already had a radical prostatectomy only to have a recurrence of the cancer, Lucas was offered a choice of being part of a clinical trial to measure the combined effects of radiotherapy and hormone therapy rather than just radiotherapy. Below, he justified his decision to opt just for the radiotherapy.

Lucas

I decided having had the journey I’d had so far, I’d made a decision on what I thought was my best primary treatment, having the prostate removed, and the second one was no, if I’ve got some- there’s a sequential approach to this, if I have radiotherapy, and it may well clear it up, I don’t need to suffer the effects that hormone treatment could give me as well, unnecessarily, but sequentially, if its, then creeps back in a few years, or five or ten years’ time I could still have hormone therapy, so it, to my mind, it seemed to be, it’s likely to be, a life extending decision process (66, RARP)

Planning for possible future treatments that might have been required could in some cases be shaped by concerns for preserving life or bodily function for longer periods of time, rather than solely for the efficacy of the treatment alone. Men’s perceptions of being ‘at risk’ could in this sense be a motivator to opt for aggressive treatments to remove uncertainty (Gillespie, 2012). However, the choices that the men in my study made following their primary treatment, for their secondary or tertiary treatments, appeared to be less driven towards removing uncertainty altogether and more towards reducing or delaying uncertainty. This changed attitude was in keeping with a newly perceived inevitability or incurability of cancer that men often described after they had received primary treatment, which Bell and Kazanjian (2011) also observed in their study.

A new perception emerged following primary treatment that prostate cancer could not be permanently concluded but rather that survivorship would need to be managed. Planning, then, was a future-oriented strategy for identifying areas that may be problematic in the future. Plans and preparations were pre-emptive and made for possible uncertain events occurring in relation to prostate cancer and associated treatment side effects.

Support groups as vigilance networks

Information and support have been identified as key motivators of support group attendance (Barbuto et al., 2011; Ussher et al., 2006), particularly so for men (Gray et al., 1996). Yet in my findings support groups were understood not just as means for acquiring information and support but also for keeping watch for any problems that might arise and for being prepared for those problems if they did arise. Andy and Paul’s accounts described how they attended their support groups to be prepared for any possible problems that might arise in the future.

Andy

It’s nice to keep in touch with people and get an update on the latest technology because you never know when you might need it again (68, RTwHT, RP)

Paul

If the prostate (cancer) returned and it was in a form that they couldn’t deal with it here, would I know where to go? And I’d rather know that now before I’m too traumatised to actually get into that, and go off and get the treatment I need. (67, RTwHT)

Paul described how preparation before an event occurs was important because if he was concerned that, once diagnosed with a problem, then he might have been ‘too traumatised’ to effectively deal with it.

Mark characterised his support group as a network that was available to him should he have needed it, a way of contacting a wider pool of people, that were not all immediately known to him, so that he would be able to get relevant, specialised information should he need it.

Mark

It’s a way of having support available if I need it and information available if I need it, right, so if something came up and I wanted to get it I could call, or email the chairman, and I’d say look can you do anything with this, or do you know anyone who can do anything with this, and take it from there (64, RP, RTwHT)

In their ethnographic study of PCSGs in Canada, Oliffe et al. (2011) found that men shared their own personal experiences of cancer with new attendees who had not yet been treated. This information assisted the new attendees in helping them to make their treatment choices. This was similarly commonly reported for the men in this research. Further, the variety of different cancer experiences of the men in the group meant that if someone had a question about a particular treatment or concern, then they could be directed to someone else in the group to find out more about that particular issue. In this way, support groups served as a network of experiential and clinical knowledge, which allowed men to acquire knowledge, following a strategy of vigilance, as and when they desired or required it. This could be undertaken to manage different uncertainties: related to a fear of cancer recurring, current or possible future treatment side effects, or a concern with whether they had made the ‘right’ treatment decision.

I characterise these support groups here as vigilance networks, where knowledge can be acquired to assist with managing an uncertainty through a network of contacts who possess a range of specialist knowledge. Understanding PCSGs in this way may go some way to explaining the extended association that many of the men interviewed had with their PCSG, where men would often still attend meetings long after they had been treated.

Discussion

This research study has limitations in several aspects of its design. My participants were recruited through two PCSGs in the South East of England. Men’s post-treatment experiences who do not attend PCSGs are not explored here. While this limits analysis to a certain group of men and how they experienced and managed uncertainty, it is likely that these men joined a support group in the first place because cancer and treatment related uncertainties were an issue for them. Recruiting from support groups can lead to a sample skewed towards certain demographic characteristics, such as men who are white, well educated, and nearing retirement (Breau & Norman, 2003; Broom, 2009; Steginga et al., 2001), which mirror the sample for this paper. During face-to-face recruitment, only two men were identified by the researcher as being non-white, and while the aims of the study did not lead to a prioritisation of recruiting a more diverse sample, the failure to recruit participants from non-white English or white-European backgrounds both reflects and reproduces ethnic inequities in prostate cancer research. Men from Black African and Black Caribbean descent are at higher risk of prostate cancer than other men (Prostate Cancer UK, 2024a) and as such their lived experiences of uncertainty and management of risks warrant attention in future work.

Recruiting from support groups also had strengths, however. Having attended support group meetings before, men were open to talking about their experiences, likely more so than they might have been had they not attended a support group before. Further, exploring men’s experiences at varying intervals following treatment offered insights into men’s changing experiences and evolving management strategies over time, in seeking to understand the chronic dimensions of post-treatment experiences. Lastly, the homogeneity of the sample provides a stronger basis for making claims about the specific group of men that was recruited for this research, even if my sampling approach prevents me from generalising beyond my participants.

Of the four common uncertainties identified in this study, the first three of these have been found to be concerns with the physical threats of illness to the physical functioning of the body. The fourth was a concern with a moral threat to self of having made the ‘right’ choice in opting to treat their prostate cancer. All threats required management, regardless of whether these uncertainties were concerns of the future, present, or past. Three strategies were identified to manage these.

The first strategy of reinterpreting biomedical knowledge was in response to the moral threat of men not knowing whether they had made the ‘right’ treatment decision. Instead of managing uncertain futures (c.f. Brown & de Graaf, 2013), the men in this research reimagined uncertain pasts as a means of managing uncertainty. By reconstructing the past through the lens of the present, men sought to make sense of and affirm their present situations.

The second strategy of planning for possible uncertain future events evidenced a recognition in men’s accounts that a long-term approach of management of cancer would be required, rather than resolving concerns altogether as men often expect prior to treatment (Bell & Kazanjian, 2011). Both reinterpretation (past-oriented) and planning (future-oriented) are identified as nuanced strategies that emerged from an overarching strategy of vigilance (Weitz, 1989), where men used their acquired knowledge for their illness in different ways to attend to gaps in knowledge and the existential concern or anxiety that this could bring, and thereby to manage the uncertainties they face.

The third strategy of engaging with PCSGs offered men access to a range of experiential and clinical forms of knowledge, both from men who had followed different treatment or non-treatment pathways and received varying outcomes from these, and from medical professionals who regularly gave presentations at support group meetings. The concept of vigilance networks has been posited in this research to understand the role and influence of PCSGs. PCSGs have been identified as being important for managing uncertainty by providing a network of contacts who can be called upon to provide a range of clinical and experiential knowledge. Men often referred to acquiring knowledge through online sources, but one problem with this was having too much information available and not knowing what information to trust. Amid this further layer of uncertainty, PCSGs served an important role of being able to narrow down the information that men were concerned with when they first attended a PCSG meeting with their concerns. Members of support groups would direct new attendees to speak to people who had experienced certain problems or who had undertaken certain treatments, providing new attendees with appropriate information that was relevant to their concerns. Crucially, being part of these networks persisted over time, for if new problems arose for men, then they could engage with their network and be directed to appropriate knowledge to address them. Furthermore, engaging in knowledge acquisition was possible within PCSGs for the sake of being prepared for possible problems that could arise in the future.

Weitz’s (1989) notion of uncertainty management as being a choice between vigilance towards, or avoidance of, an uncertainty serves as a basic framework for understanding uncertainty management. However, the concept of vigilance particularly has been shown in this research to have great potential for development, to better understand how uncertainties are managed. Vigilance, as a strategy for managing uncertainty, involved seeking knowledge to better understand illness and finding ways to most effectively deal with the uncertainty, alongside any future problems that may arise in relation to it (Comaroff & Maguire, 1981; Schneider & Conrad, 1983; Weitz, 1989). Connecting to vigilance, two sub-strategies were identified for using the knowledge acquired from vigilance to plan futures or reinterpret pasts. Akin to Seppola-Edvardsen and colleagues’ (2016) notion of ‘balancing’, I argue for a notion of vigilance networks treats vigilance not solely as an individual activity but as a communal one and can be interpreted as being symptomatic of a broader societal concern with risk (Beck, 1992) and of an increasing moral necessity of attending to risks in the lived experience of the present (Roth, 2010).

With risk constituting an increasing mediating role in everyday life and in people’s perceptions of chronic diseases (Aronowitz, 2009), there is a more urgent need to have appropriate theoretical resources to explain how uncertainties are managed. Indeed, uncertainty remains undertheorized compared with risk within sociology, with risk often treated as the dominant explanatory framework for decision-making and other illness behaviours, yet people will draw upon a range of resources (including trust, hope, heuristics, and emotions) as well as risk to manage uncertainty (Zinn, 2008). This article adds to the theoretical resources for understanding uncertainty management, how this management is temporally oriented, and more broadly evidences the chronicity of men’s experiences post-treatment for prostate cancer (see also Green, 2021b, 2021b, 2023). To better understand health and illness behaviours we must move beyond cultural assumptions rooted in risk studies that decision-making is rooted in ‘rational’ choices informed by ‘objective’ scientific data, with the ‘aggressive’ Gleason scores previously described being a prime example of this. The existential state of uncertainty is instead also mediated by other information and feelings, and crucially shaped by social interactions and group practices.

Conclusion

In this article I have explored men’s experiences and management of uncertainty following treatment for prostate cancer. Four common uncertainties were identified:(1) fear of cancer recurrence that comes from continued PSA testing for monitoring purposes following treatment; (2) unexplained bodily symptoms interpreted as possible signs of cancer recurring; (3) iatrogenic side effects experienced following prostate cancer treatment; (4) the question of having made the ‘right’ choice in opting to treat their prostate cancer. Three strategies of vigilance were identified to manage these uncertainties: (1) (re-)interpreting biomedical knowledge; (2) planning for future uncertain events; (3) engagement with support groups that functioned as ‘vigilance networks’. These strategies correspond respectively to past, future, and present- temporally oriented attendance to lived experiential uncertainties as a way of managing uncertainties. These and other temporal strategies warrant further investigation in order to better understand how they can and are being used in uncertainty management. These findings offer a more detailed theoretical resource for conceptualising how uncertainty is managed in different temporal imaginaries.

Acknowledgments

Grateful thanks to the research participants and my PhD supervisors: Professor Jonathan Gabe, Dr Robert Meadows, and Professor Sara Arber.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was funded by an Economic and Social Research Council +3 doctoral studentship award.

Appendix 1:

List of Abbreviations

Table

BT	Brachytherapy
HT	Hormone Therapy
PCSG	Prostate Cancer Support Group
RARP	Robot-Assisted Radical Prostatectomy
RP	Radical Prostatectomy
RT	Radiotherapy
RTwHT	Radiotherapy with Hormone Therapy