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).
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.
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.)