Watchful waiting and active surveillance for prostate cancer

Some prostate cancers are very slow growing and never cause the man any problem. This is particularly true with older men, many of whom will die from another condition before the cancer causes trouble. Because there is also considerable uncertainty about the effects of all of the available treatments for prostate cancer, ‘watchful waiting’, which involves frequent monitoring without active treatment, may be the best choice for some men.

Watchful waiting

Watchful waiting aims to avoid treatment unless symptoms develop. If a man does chose watchful waiting, active treatment may be pursued if symptoms become apparent or the cancer progresses and starts to grow. You will have regular PSA tests and may have digital rectal examinations.

Some men were certain that watchful waiting was not an option they could have lived with. Also, not all men were aware that watchful waiting is considered to be a serious option for men with prostate cancer, perhaps because it is hard to believe that early aggressive treatment would not be most beneficial. One man’s doctor told him that watchful waiting was not recommended for men of African descent.

Concludes he could not have lived with watchful waiting.

Age at interview 70

Gender Male

Age at diagnosis 66

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In retrospect would you have liked to have been given the option of doing nothing?

No I don’t think I could’ve handled it. It’s a bit like,well I’ve got to get rid of it, no I don’t think I would,because you’d be walking, you’d be walking around thinking well it’s still there. In fact you still do now but not to that extent because you feel somebody has done something for you, well you know somebody has done something for you but no I don’t think I could’ve lived with that.

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Compares watchful waiting to na’ve ignorance.

Age at interview 56

Gender Male

Age at diagnosis 55

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

I suppose we could’ve said wed rather bury our head in the sands. I think he would’ve 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 [a radical prostatectomy], and if I was may be you know terribly scared of theatres or whatever I don’t know. Luckily we were both absolutely in agreement that we wanted to get on with it, but no I think he would have given us a severe ticking off if wed prevaricated and he would’ve told us.

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States that he was informed watchful waiting is not recommended for those of African descent.

Age at interview 49

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It [watchful waiting] was presented or discussed as an option but the consultant then suggested that this was not an appropriate procedure for me because she was involved in some, in setting up some research and the preliminary indications were that men of African descent, that their particular prostate cancer in them, the prostate cancer in men of African descent was more active and aggressive than it would be in Asian or people of European descent and therefore if there was another route, another treatment available she’d prefer to do that rather than the watchful waiting. So there is some indication around that in the male of African descent that the prostate is much more aggressive.

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Men who wanted to opt for watchful waiting could come under considerable pressure from well-meaning members of their families, support groups or doctors, and commented that you might need to be quite strong to stick to the decision.

Highlights the pressure from his consultant and wife to not continue with watchful waiting.

Age at interview 49

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I was very upset in London when the biopsy was done because the consultant said ‘I operate on you right away. Now I had read up things meanwhile and I was terrified of either incontinence or well lack of sex.

I saw this consultant who had done this biopsy, under whose direction it was done, in fact he had directed himself and he 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 ‘Yes but I, I don’t want to be 1 of the 10%.

My wife kept pestering me in a very nice way that I should think about it and my children, well they live in different countries apart from one in London, one in Scotland and the others are phoning me up every month and saying ‘How is it going dad?’ even 2 years later and it’s very sweet but I don’t really appreciate that very much.

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Describes the pressure from family not to stay with watchful waiting.

Age at interview 68

Gender Male

Age at diagnosis 67

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Having read all the side effects and everything that I wasnt going to do anything because my doctor said hundreds of thousands of people are walking about with it, the rate of growth is X, Y, Z and what have you so I wasnt going to have anything done about it. Then my family began to put pressure on me and say you know Dad youve got a cancer, you know you really ought to do something, cancers even if theyre slow they don’t stand still and what have you and if you go beyond 70 and I’m 68 now, if you go beyond 70 they wont do it anyway sort of thing. Because theyd told me that you see because you havent got the life expectancy which would justify doing it so that’s what they said. So they began to put pressure on to me so I went back and I reassessed the situation and this was about the August time.

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For men who chose watchful waiting the deciding factors were finding out about the uncertainty of benefits from active treatment; and avoiding the incontinence and impotence which are frequent side effects of treatment (see ‘Side effects of treatments’ section). For at least one man the disruption involved in daily radiotherapy treatment was also a factor. Those who had chosen watchful waiting had sought second opinions, spoken to doctors in the family and had seen a US video reviewing treatment options.

Concludes his decision to opt for watchful waiting stems from the uncertainty of benefits in…

Age at interview 57

Gender Male

Age at diagnosis 56

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I have read articles which describe the state of play of research and treatment into prostate cancer and I sort of now know that in terms of western medicine pretty much what is known in the sort of professional fraternity on prostate cancer. And 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 if you like in terms of well I suppose the overall satisfaction and results for the patient. So that’s weighing up the chances of eliminating the cancer with the side effects that I mentioned earlier of impotence and urine dysfunction and indeed it can also induce some bowel dysfunction as well, depending on the treatment that you’ve undergone. And in addition to that the rates of success in terms of eliminating the cancer are also not absolutely clear using different treatments. I’ll give an example, there is apparently in the United States a surgeon who has stated that 30% of his patients after operation he has realised he probably would’ve been better not to have operated on, in other words hes actually found even though hes been very careful only to operate on patients he thought would have a good chance of success in 30% of the cases it would probably have been better not to operate, in other words the side effects are probably more significant than the disease itself and indeed it’s not necessarily had an impact on eliminating the disease, presumably may be because it’s spread somewhat.

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Concluded watchful waiting was more suitable for him, considering the problems with radiotherapy.

Age at interview 77

Gender Male

Age at diagnosis 75

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But the radiologist was extremely good. He outlined the options, he said ‘surgery, he said well your consultant doesnt think that would be an option, he says now with the radiology, he pointed out the side-effects, loss of potency and saying well there were ways of still enjoying your sex life and all the rest of it you know and but the thing that really, what worried me was the prospect of sort of double incontinence. Now that really set me back a bit you know and also this may seem trivial but this treatment would have to be conducted in Y Town. Now I thought it was, I was so nave I just thought it would be a one visit. Oh no it’s going to be half dozen visits. I thought how the devil am I going to get to that town and back you know, you cant, the wife does drive but she only drives up to the village shop and back you know I thought get up early in a morning and sort of with frequency, I’m not worried about the driving but with frequency and problems it’s a very great worry. Anyway we discussed it at length with the doctor and he said Well, he said Or you can just wait, I said Well if I just wait I’m getting older, would that option still be valid or available to me? Oh yes, he said yes, he said. Look, he said heres my home telephone number, he said any time, he says You want me to take action, he said ring me up.

That’s nice.

Oh I thought it was wonderful. I think he was conscious possibly that there had been such delays before because of clerical problems. So I thanked him, I thought well I cant, Ill wait because that was one of the options that they gave on the video.

Did they, did he give you the option of being collected in a hospital car if you did decide on the radiotherapy?

No that wasnt given as an option.

So the transport was one of the reasons why you decided not to go for radiotherapy and the worry about the incontinence?

Well, yes

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

Yes it did, it did make a serious contribution. I think it was, had an American bias and so theyre much more advanced in their, or seemingly advanced in their treatments and their surveys, it gave, you were loaded with statistics and they were not really pertinent to the patients in the UK because the back up treatment and the facilities in the States possibly were sort of much better than here. But nevertheless the options that were available and so on did need clarifying being on a video you could switch off if you were feeling, well Ive had enough of this, and you could go over it again, so yes that was quite, quite valuable.

And one of the options was watchful waiting?

Watchful waiting, yes, oh yes very much and I thought well, so that was the

Had the surgeon and the radiologist also mentioned the option of doing nothing, of watchful waiting?

Oh yes the radiologist certainly he said, he said I just have not got a crystal ball, he said Ill look into it, he said but I cant really advise you, he said if you go down that road of having the radiology treatment, he said all I can point out, he said These are the possible side-effects. He said You may not experience any of them. And so I thought well theres still this worry over double incontinence, traveling and so on, I thought well Ill wait another 3 months.

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Active surveillance

Active surveillance is another form of observation for men with localised prostate cancer. In this case the doctor intends a man to have treatment to try and cure the cancer if it starts to grow. It is different from traditional watchful waiting in that the patient is more carefully observed. In the first year of surveillance you will usually have blood tests every 3-4 months to monitor your PSA levels and digital rectal examinations every 6 months, and will be asked if you have developed any new symptoms and after a year you will be asked to have a prostate biopsy. After the first year of surveillance you will usually have blood test every 3-6 months to monitor your PSA levels and a digital rectal examination every 6 months. After five years of surveillance blood test will usually be every 6 months and a digital rectal examination every 12 months (recommended by NICE CG175 January 2014).

If these regular tests show that the cancer is progressing (growing) your doctors will then recommend treatment intended to cure the cancer, such as surgery or radiotherapy. If your cancer is not growing or developing, it is safe to continue with active surveillance.

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