Is ‘watchful waiting’ a real choice for men with prostate cancer? A qualitative study

Authors


A. Chapple, DIPEx, Department of Primary Health Care, University of Oxford, Institute of Health Sciences, Old Road, Headington OX3 7LF, Oxford, UK.
e-mail: alison.chapple@dphpc.ox.ac.uk

Abstract

Objective To understand what leads men to choose ‘watchful waiting’ rather than active treatment for cancer of the prostate.

Patients and methods Fifty men with confirmed prostate cancer in England, Wales and Scotland were interviewed about all aspects of their illness, for a Database of Individual Patients' Experience of illness. The sample included men at different stages of diagnosis and with experience of a wide range of treatments. We report here only what men said about their choice of treatment and the decision-making process.

Results Watchful waiting would have been clinically inappropriate for almost half of the men (those with serious urinary symptoms and those with metastatic disease). However, few of the men who might have chosen watchful-waiting remembered this being presented as a serious option. Most in this group chose radical prostatectomy, radiotherapy, brachytherapy or cryosurgery. The few who chose watchful waiting had found doctors who supported their decision, had assessed the evidence from Internet sites, and were concerned about the side-effects and uncertain outcome of treatment. Men who chose watchful waiting, as well as those who opted for treatment, described considerable pressure from family members, doctors or support groups, to seek active treatment.

Conclusion This study helps to explain why some men will not contemplate watchful waiting, and why others may find it difficult to pursue that option. Understanding men's concerns may help clinicians to support men's treatment decisions. Treatment for prostate cancer is highly controversial because no randomized, controlled trials have shown whether or not active intervention increases survival. If trials are not completed it cannot be determined whether active treatments are the best course of action for men with prostate cancer.

Introduction

The choice of treatment and management for early prostate cancer is controversial [1,2]. While potentially curative treatments include radical prostatectomy, EBRT, brachytherapy and cryosurgery, ‘watchful waiting’ is also an option for men with this disease. Watchful waiting, also termed active surveillance or monitoring, implies no therapy once the disease has been diagnosed until the patient has some symptom resulting from complications of local or systemic disease [3]. However, when considering watchful waiting the patient should be reassured that his progress will be monitored, and that any necessary treatment will be carried out in good time [4].

Using a database of 4458 men with prostate cancer, recruited through a network of urologists throughout the USA, Koppie et al.[5] identified 329 (8%) who chose watchful waiting as the initial management of prostate cancer. Patients were followed in the database until withdrawal from the study or death. Men who chose watchful waiting were significantly older, had lower stage and grade disease, and lower serum PSA values at diagnosis, than those who sought treatment.

Many urologists consider that watchful waiting is an inappropriate choice for younger men with early-stage prostate cancer [6]. For example, George [4] stated that watchful waiting is ‘certainly not suitable for any patient aged less than 65 years with disease curable by radical therapy, unless the patient has limited life expectancy for any other reason’, and when British consultant urologists were asked about treatment preferences, radical treatments were the first choice of treatment for all hypothetical patients with apparently localized disease under the age of 70 years [7].

From data compiled by the Surveillance, Epidemiology, and End Results Programme in the USA, with a population database of 59 876, it is apparent that watchful waiting is a viable option for patients with grade 1 cancer (Gleason scores 2–4) [8]. However, the situation is less clear for men with more aggressive tumours. Although this database has shown higher 10-year survival for men treated radically (radical prostatectomy 67%, radical radiotherapy 53%, watchful waiting 45%) for high-grade cancers (Gleason scores 8–10), these data did not come from a randomized trial and it remains unknown whether or not active treatment actually lengthens survival [1].

At present it is difficult to distinguish patients who have aggressive tumours from those who have tumours with low biological activity. A positive biopsy may not identify the true extent of tumour, or its true grade [9]. However, PSA tests may be able to identify cancers that are growing quickly, and some argue that a degree of over-treatment has to be tolerated for younger men with early prostate cancer [4].

While urologists clearly favour active treatment for early prostate cancer, side-effects of treatment and quality of life must be considered when making treatment decisions. Reporting in 1999, a working party of the BAUS [9] concluded that all patients with early prostate cancer should be given the option of various treatments, including watchful waiting. This choice is even more important now that it is known [10] that impotence is more common after prostatectomy than previously thought.

The treatment decision will be easier to make once large, randomized, multicentre trials, providing definitive information about the relative efficacy of prostate-cancer treatments, are completed. These trials are now underway, but the results will not be available for several years [11–13]. If trials are to succeed it is important that men randomized to watchful-waiting feel able to take part. Although we know how many men opt for one treatment or another, with notable exceptions [14,15], relatively little is known about what leads men to accept or reject watchful waiting when they are diagnosed with early prostate cancer. One aim of our qualitative study [16] was to explore how these treatment decisions are made.

Patients and method

After reviewing published reports and obtaining ethics committee approval men with prostate cancer were invited for an interview; in all 50 men in England, Wales and Scotland, who had a confirmed diagnosis of prostate cancer, were interviewed. The sample was chosen to include men at different stages of diagnosis, some recently diagnosed and others who had been diagnosed years previously, with experience of a wide range of treatments [17]. Men were recruited through GPs, urologists, support groups and charities. Great efforts were made to recruit men from ethnic minority groups, e.g. we contacted an organization called Cancer Black Care, and tried to recruit through GPs working in areas with large ethnic minority groups, but few men with prostate cancer from minority groups volunteered for interviews. Table 1 show the sample characteristics and the web site http://www.dipex.org has further information about the participants. Men described many aspects of their experience of illness, but here we report only men's reasons for rejecting or accepting watchful waiting as choice of treatment.

Table 1.  Sample characteristics of the 50 men interviewed about prostate cancer and their treatment decisions
CharacteristicNo. of men
  1. The values include those who had brief hormone treatment before radiotherapy or surgery, and those who had EBRT for bone pain.

Age group, years
 50–6010
 61–7019
 71–8521
Ethnicity:
 White British46
 Black Caribbean 1
 Black Nigerian 1
 Indian 1
 White East European 1
Employment (includes those retired):
 Professional/higher managerial22
 Other non-manual19
 Skilled manual 8
 Unskilled manual 1
Circumstances that led to a diagnosis:
 Had symptoms before having a PSA test40
 Had a PSA test as part of a routine health check, etc.10
Type of treatment (some have had more than one treatment):
 Watchful waiting (one man had a TURP in 1982) 4
 TURP (followed by one or more of the treatments listed below)17
  Radical prostatectomy 7
  EBRT20
  Brachytherapy 5
  Hormone treatment32
  Orchidectomy 3
  Vaccine trial/antigen therapy 2
  Chemotherapy 1
  Cryosurgery 3

The interviews

All except three of the men in the entire sample were interviewed in their homes between September 2000 and January 2001. Almost all were interviewed by one of the authors (A.C.), a medical sociologist. Men were asked to tell their story, from when they first noticed their symptoms or had a PSA test, with prompts about specific issues, and they were asked to describe how they had made treatment decisions. All interviews were audio-taped and lasted 1–3 h.

The interviews were fully transcribed and each transcript returned to the respondent to read. Patients could remove sections if they wished that they had not discussed any particular topic. The present findings are based on an analysis of the entire dataset; thus all men's comments relating to watchful waiting are included in the analysis, which is not based simply on the transcripts of those men who chose watchful waiting. Data analysis proceeded according to methods commonly used by qualitative researchers [18]. Using a computer program (NUD*IST [19]) sections of text from interviews were marked, removed and linked to sections of text from other interviews that covered similar issues or experiences, and then these sections of text were renamed as ‘categories’ or ‘themes’. Each category or theme was then considered in the light of the context of the whole set of interviews [20,21]. Inter-rater reliability scores were not developed, as the interviews had very little structure [22] but two of the authors (A.C., S.Z.) regularly discussed the coding and results.

Results

Watchful waiting was not a treatment option for almost half of the men interviewed. Some had developed metastases and had been advised to have an orchidectomy or hormone treatment to control the spread of the disease. Others suffered pain and clearly needed palliative treatment, e.g. 89strontium injections or radiotherapy. However, few of the men who might have chosen watchful waiting remembered this being presented as a serious option. The vast majority of this group had chosen active treatment, e.g. radical prostatectomy, brachytherapy, cryosurgery or radiotherapy (Table 1).

The comments made about watchful waiting by those men who chose active treatment are assessed briefly and then the accounts of men who chose watchful waiting considered in more detail. Men described the various factors that influenced their choice of treatment, both at the time of diagnosis and during the following weeks or months.

The men who opted for active treatment

Men were generally optimistic that some form of early treatment would lead to cure. Indeed, such was their optimism that most of them advocated population screening for prostate cancer and routine testing for raised PSA (see http://www.dipex.org). Very few men seemed to be aware of the possibility that treatment might not improve survival. However, at least two men who had opted for active treatment were clearly aware of medical uncertainty, as this quote illustrates:

I've discussed it with other medical friends, and as far as I can see the choice that I've made, and was being made for me, seems to be as good as any in terms of current thinking. I am, I suppose, a bit disappointed that there isn't a bit more consensus yet over what should be done at various stages and what can be done. (P06, aged 56 years, diagnosed 2000, radiotherapy about to start.)

Relatively few men under the age of 70 years recalled that watchful waiting had been mentioned as a possible option. One man said that prostatectomy had been actively encouraged:

I: Did anyone give you the option of doing nothing, just watchful waiting?

R: No one said to me at the time, watch and wait, no. The direction pointed to me in those days was, ‘Get it done [prostatectomy], and get it done as quickly as you can, which I would accept has its benefits, but I do question, are those benefits, the early diagnosis and early treatment, outweighed by the changing quality of life, because quality of life has changed, and although I appreciate life very much these days, it isn’t the life that I lived prior to my op. (P26, aged 63, prostatectomy 1993.)

However, some said that although watchful waiting had been discussed they could not have contemplated a period of surveillance or inactivity because they wanted to do something positive and ‘fix’ the problem. They had seen what cancer had done to others and were afraid of the consequences of any delay in treatment (see Box 1).

Figure bx1.

Some men said that their consultants did not think that watchful-waiting was suitable for them (see Box 2), and one man said that his surgeon would have persuaded him to opt for active treatment had he delayed:

I: Did the surgeon ever give you the option of doing nothing?

R: I suppose we [his wife and himself] could have said we would rather bury our head in the sands. I think he would have given us … he was the sort of chap who'd have given us a monumental lecture, and quite rightly, if we had decided that we just couldn't face it [surgery], if I was terribly scared of theatres. (P07, aged 56, prostatectomy 1999.)

One man recalled that it was hard to get advice about all the possible options, and that surgeons tended to recommend surgery. When describing in detail the options given to him by various doctors he did not mention watchful waiting, and he eventually chose his treatment by searching the Internet:

The problem with the options was that it was very, very much compartmentalized. When I went to see the surgeon I think his idea was that radical prostatectomy is the thing. And that's what I've heard from everybody else, because all urologists are basically surgeons and they say to a hammer everything looks like a nail, and I think that's very much the way it is.

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And so you know, if I went to him he could only give me information about surgery. I was put onto somebody who was involved in radiotherapy and he gave me a lot of information about external beam radiation. (P42, aged 51, brachytherapy 2000.)

Pressure sometimes came from families to pursue active treatment. One man, aged 68 years, was given a wide choice of treatment. At first he considered surgery, but then opted for watchful waiting. He was aware of the side-effects of treatment and his GP had explained that prostate cancer was common at his age, and might be slow-growing, thus causing little trouble. However, his family were afraid that if he did not opt for surgery before he was 70 he would lose the opportunity of having a prostatectomy and jeopardise his chance of a cure. He explained what had happened:

R: Then my family began to put pressure on me and say, ‘Dad, you’ve got cancer, you know you really ought to do something, cancers even if they are slow, they don't stand still, if you go beyond 70 they won't do it [prostatectomy], because they had told me that. (…) So they began to put pressure on me, so I went back and I reassessed the situation. (…) Prior to that I was quite prepared to let sleeping dogs lie, and put up with the inconvenience, as it were, you know, a bit of a chicken I suppose really, but there you are. (P05, aged 68, external beam radiation 2000.)

When he finally decided on active treatment it was found that the cancer had spread into the tissue surrounding the prostate, so radiotherapy was deemed to be the best option.

The men who opted for watchful waiting

The few men who chose watchful waiting and who had not had any active treatment for their cancer were aware of the side-effects of treatment, and were anxious to avoid incontinence and impotence. They were also aware that treatment might not prolong their lives. One elderly man initially considered having radiotherapy, but he was worried about the side-effects of treatment, particularly incontinence, and the daily journey he would have to make to have his treatment. He was given pamphlets, booklets and an American video to watch, which finally helped him make his decision to opt for watchful waiting. He felt reassured when his doctor told him that if he changed his mind he could still start some form of treatment:

R: I was given a video (…) You could bring it home, and see it as many times as you liked. (…) It gave all the options, it was very, very good, very reassuring, it was very, very helpful, very good. (…)

I: To what extent do you think the video helped you make a decision?

R: It made a serious contribution. (…) The options that were available and so on did need clarifying. Being a video you could switch off if you were feeling, ‘Well, I’ve had enough of this', and you could go over it again, so yes that was quite, quite valuable. (P21, aged 77, diagnosed in 1998, watchful waiting.)

Another elderly man discovered he had prostate cancer after having had a body scan and a PSA test in California, as part of a routine check before marrying an American woman. He was concerned about the side-effects of treatment, and was ‘terrified’ of either incontinence or impotence. On returning to London he had another PSA test and a biopsy, and on getting the results his consultant was anxious to operate immediately.

R: This consultant who had done the biopsy was insistent that he would operate on me and I was really upset. He said, I've done 400 of these and only 10% go wrong (laughs), and I said, ‘Well, I don’t want to be the 10%. (P22, aged 74, diagnosed in 1998, watchful waiting.)

He then sought another opinion and saw a consultant who said that there was no need to rush into treatment and that the situation could be monitored. This elderly man, having adopted watchful waiting, expressed particular unease about the American medical system:

R: In America, as against Britain, I find that the attitude is hysterical when something is found wrong with you, and you come under immense pressure [to do something]. I mentioned the Internet earlier and privacy, the fact that after I had the body scan, from that world famous hospital [in California], I got letters, they invited me to have a discussion, ‘Because there are things that can be done for you Mr … ’. (P22).

This man remarked that he was also under considerable pressure from his wife and children to have to consider active treatment.

R: My wife kept pestering me in a very nice way that I should think about it [treatment], and my children are phoning me up every month, and saying, ‘How's it going Dad', even two years later, and I don't really appreciate that very much, and they say, ‘Have you been [to the doctor] again?’ In fact my daughter says, ‘Why don’t you have another biopsy?' (P22)

The third man who had adopted watchful waiting explained that when he first discovered he had prostate cancer he saw a surgeon and was under pressure to have surgery:

R: He knew I was about to go overseas, and he said, ‘I’m a surgeon, and I would recommend surgery, because you get it now, and then it's [the cancer] gone, so to speak'. And of course that is the whole atmosphere, the whole climate is telling you, find these things early, and then you can deal with them, and they won't trouble you any more. (P38, aged 67, diagnosed in 1999, watchful waiting.)

Another doctor, an oncologist, recommended hormone treatment, but the man did not start any treatment. However, when he returned from abroad his PSA had risen to 23 ng/mL, and after a joint consultation with the surgeon and a radiologist he was advised to ‘do nothing, but wait watchfully’. Even though his bone scans and MRI scans did not suggest the cancer had spread, his doctors said that there were no research findings to suggest that surgery would prolong his life. Being aware of the side-effects of treatment, and with the support of his wife (a doctor) he agreed to ‘watch and wait’. However, it is notable that when he attended a support group, he felt under pressure to seek active treatment:

R: The more vociferous members of that group were very suspicious about watchful waiting, and they were advocates of the kind of popular approach, ‘find things early, and then you deal with them, and then you’re OK', like with breast cancer, and so on. I had to kind of defend myself, and I didn't feel that was what a support group was for (…). It is difficult to hold to being watchfully waiting I think (…). You have to be strong. I think I have had to exercise some kind of defence against pressure to do something (P38).

This man also felt under some internal pressure to ‘do something’:

‘Pressure comes from inside as well as outside. It comes from inside me, it comes from my own anxiety I suppose. It comes from outside certainly, from the support group, places like, well the whole propaganda about having this screening is, ‘Then we can find it early and do something about it’. They don't actually say that we might find it early and decide to do nothing and that would be all right too' (P38).

The fourth man who chose watchful waiting was given all the options when he consulted a surgeon, but felt that surgery was the option being ‘pushed’. He then discussed the treatment options with various ‘medical colleagues’ in his family. They suggested that he should seek a second opinion, which he did. The second urologist also suggested that he should seriously consider a prostatectomy because of his relatively young age (57 years). However, having searched the Internet he finally decided to opt for watchful waiting:

I: How did you come to make this decision, to go for watchful waiting?

R: I've had advice from two members of the family and I've had advice from two consultant urologists. But what I've done is go on the Internet and I've registered with one of the information services that exists on the Internet and I actually receive each week a list of abstracts of the latest publications on anything to do with urology. (…) I suppose my decision to adopt watchful-waiting for the time being at least is based on the scientific evidence that really the doctors don't actually know whether the outcomes of their different treatments are more positive in terms of the overall satisfaction and results for the patient. (P49, aged 57, diagnosed 2000, watchful waiting.)

Discussion

Much has been written about patient preferences for decision making and how patient involvement may improve health outcome [23,24] but less is known about the actual decision-making process, particularly in urology. We present the data as themes, and not as relative frequencies, because qualitative studies are not designed to represent the wider population numerically[25]. If we had given the numbers of men who fell into various categories it might have been misleading, suggesting that we had attempted to obtain a random sample of the population. The sample was selected to represent the widest practical range of experiences of men diagnosed with prostate cancer. However, most of the volunteers were well-educated white men. We might have identified additional issues if we had interviewed more manual workers and more men from other ethnic groups.

Some men probably forgot the details of the conversations they had with their consultants, particularly where interviews were conducted some time after the treatment decision had been made. However, conducting some interviews months or even years after the initial treatment decision was useful, because it allowed us to explore the process of decision making and to identify factors that made it hard for men to follow their original decisions. Those who opted for treatment, and those who chose watchful waiting, described considerable pressure from family members, doctors, and a support group, to seek active treatment.

Perhaps it is not surprising that some patients felt that their urologists wanted them to opt for active treatment. Atkinson [26] argues that medical students are trained for certainty rather than uncertainty, and action rather than inaction. He observed that professionals have faith in tried and trusted routines, and that although they may acknowledge uncertainty in some contexts, in other contexts this may not seem appropriate. Fox [27] also noted that doctors believe that too great a display of uncertainty may alarm their patients or undermine their trust.

Nor is it greatly surprising that some of the patients felt that they had to ‘do’ something to combat their illness. In the past, the literature has tended to use military language when describing people's ‘battle with cancer’[28] and the media depict celebrities, particularly sportsmen, actively fighting cancer. As Seale [29] notes, their illness experience is compared with sporting struggles. Other studies have also shown that patients suffering from other illnesses, e.g. breast [30] and testicular cancer [31], are keen to take action, and start chemotherapy or radiotherapy, rather than adopt a watchful waiting strategy. Charles et al.[30], who interviewed women with breast cancer, suggest that interventionist strategies provided women with a sense of control over a disease they see as frightening, unexpected and mysterious. Doing something as opposed to doing nothing also alleviated the possibility of experiencing ‘decision regret’ later, that something else could have been done to promote a successful outcome.

The Prostate Cancer Support Association, a national association of regional and local self-help support groups in the UK, has a website that states that watchful waiting is ‘usually appropriate for older patients of 70 years or more’. The site suggests that prostatectomy is unlikely to lead to long-term incontinence, and that with modern surgical techniques ‘impotence may be short lived’[32]. ‘US TOO’[33], the world's biggest, independent charitable network of prostate cancer support groups, gives details about treatments such as prostatectomy and radiation therapy, but does not yet have a section on ‘watchful waiting’. According to the website, that section is ‘coming soon’. Thus perhaps we should expect members of support groups to be in favour of active treatment. However, the graphic account of the man in our sample who felt under pressure from his support group to change his mind about watchful waiting was still surprising. A previous report of men's experiences of prostate cancer self-help groups in Canada [34] mentions only their positive experiences (perhaps because those interviewed for that research were active members of support groups, rather than those who had left a group because they had not found it useful).

As there are so many possible treatments for prostate cancer, and as urologists and radiotherapists tend to recommend different treatments [1], it is essential that men are well informed and involved in the decision-making process. While there is wide variation in the amount of information that patients with early-stage prostate cancer think they need to decide on their treatment [35], patients should be alerted to the existence of uncertainty and the notion that treatment may not be better than watchful waiting in terms of survival. Shultz [36] rightly argues that, “Differences in experts’ advice can often be resolved only on the basis of risk and value preferences.” Decision aids, e.g. videotapes [37], may prove invaluable for men with prostate cancer.

It is important that randomized controlled trials, including men who are randomized to watchful-waiting, are completed. O'Reilly et al.[38] reported that in previous trials younger men have not allowed themselves to be randomized to a ‘watchful waiting’ group. However, the ProtecT feasibility study has shown that this need not necessarily be the case, as men identified with localized prostate cancer after a programme of ‘case-finding’ in the community are being successfully randomized in a multicentre treatment trial to surgery, radiotherapy or monitoring (Donovan, Hamdy, Neal et al., personal communication). The methodology of the study and the way the information is presented to patients is likely to be crucial in allowing randomization to take place.

We hope that the present study has also highlighted what might be done to support men who have chosen watchful waiting and to encourage men to take part in trials that include ‘watchful waiting’ (and, just as important, to remain in the trials once they have been recruited). Patients who choose watchful waiting need the support of their doctors and families, particularly if members of self-help groups do not support them. If possible, with the patient's permission, relatives should also be included in discussions about treatment options, so that they also understand that watchful waiting is an active process [4], and that other treatments can be started later if necessary. If family members do not understand the rationale behind watchful waiting they may put immense pressure on men to seek other more aggressive active treatments, which may not be in the best interests of the patient. If trials are not completed it will not be possible to determine which treatments are best for men with prostate cancer.

Acknowledgements

We thank the men who gave us the interviews, and those who helped to recruit volunteers. A.C. interviewed most of the men for this study and analysed the data in collaboration with S.Z. The prostate cancer study is part of the wider DIPEx project. A.M. and A.H. had the original idea for DIPEx and S.Z., R.M. and S.S. have been involved in the DIPEx project since it began. A.C. drafted the paper; all the authors contributed to the subsequent drafts and final version. The study was funded by the National Screening Committee.

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