Interview 49

Age at interview: 57

Age at diagnosis: 56

Brief Outline: Diagnosed with prostate cancer 2000, watchful waiting.

Compares the biopsy to the unpleasantness of being flicked with an elastic band.

The 6 point biopsy I was told would be uncomfortable and I might sort of feel slight pains like having an elastic band zapped at me you know sort of inside your backside and yes I suppose that really was what it was like. It was a bit unpleasant you know having sort of a big tube poked into your backside and then this gadget that sort of goes in and takes these 6 samples from you. But it's over in, I think it took about 20 minutes, something like that. I was counting them and unfortunately he said that 2 of them hadn't worked very well so I had 8 instead of 6.

Explains why there are problems associated with PSA screening.

I think this is a difficult one. I have a medical person in my family who is completely anti PSA screening because having got a positive result you end up in the situation that I'm in, of then being given 4 or 5 options, one of which is doing nothing. Well, if that's the case, then not knowing, then that's what you're doing, you're doing nothing. But on the other hand, watchful waiting is a little bit more than doing nothing, it's actually knowing and monitoring, and therefore being in a position to make decisions as to what treatment you might go for. 

So I would say on balance, relatively high-risk people, men of a certain age, men with certain backgrounds & I believe for example, my sons probably after the age of 45, it might be an idea if they were screened, but I think to screen the whole of the male population, and then simply be saying to them, 'Well, actually we're not quite sure what to do about it,' is probably not terribly helpful to people, and for a lot of people might be quite destabilising. And I do understand that an awful lot of people end up dying from things other than prostate cancer, and then if they have an autopsy they find they had prostate cancer all along, so knowing that you've got prostate cancer and you're not going to die of it is not necessarily very helpful. 

Explains how investigations started after a urine infection that would not clear with antibiotics.

Well when I was about 40 I had the first experience of urine infection and it was quite unpleasant you know I had to sort of go to the doctor in the middle of a weekend and a lot of pain, impossible to pass urine and so on. And he sort of did a rough examination and said that I'd got an infection, I didn't have any tests at that stage but I went onto an antibiotic and that seemed to get rid of it. So, oh I suppose after about 10 days I was sort of reasonably okay, feeling a bit weak but, now that repeated itself about 3 times and each time I had antibiotic and it seemed to clear it up. Then a bit more recently, about 2 years ago I went onto an antibiotic and it didn't clear it up at all. I had a second antibiotic, this was provided by the GP but he decided that I really ought to go and see a consultant urologist at the local hospital so I agreed to do that. Waited about 6 weeks, something like that, saw the urologist and basically the sort of process of various investigation started.

Advises people to get as much advice and information as they can.

Is there anything you'd like to tell other people, other men who've just been diagnosed, have you got any message for them?

Well I think, I think if you've been diagnosed with prostate cancer then the important thing is to..., well first of all it's a shock, it's bound to be a shock but once you've sort of got over the shock you know keep your head and collect information, ask questions, talk to people you know anybody that you feel comfortable with talking to, whether they're in your family or outside. If you're at all unsure about what the doctor is telling you ask him more questions or her and if you're still not happy go and ask for a second opinion and you know recognise that the chances are that it's a slow growing cancer and that there are treatments and there's also the option of just seeing how things go. 

Describes how he lives for now rather than have concerns for the future.

So has all this affected your view of the future at all, your whole philosophy of life?

Not a great deal, it's made me less worried about the fact that I haven't actually got very good pension provision because I've worked overseas much of my life and I work in a charity, or I've worked for charities of one sort or another and I haven't built up much pension so I suppose in a way that's a bit of a relief really you know I sort of recognise that I'm probably not going to be one of the statistical, one of the people who needs a statistical age expectancy for or above the statistical age expectancy for men. I actually work for a charity that works with older people and you know I mean I do see a lot of differences in the way people enjoy or otherwise their old age. So you know I'm quite, I'm quite sort of philosophical I suppose about having, I suppose I'm more interested in sort of good quality active living for as long as possible than say you know ending up may be sort of rather chronically ill so I suppose that does influence me a little bit yeah. But I cycle by the way and I also do yoga and both of those I think keep me reasonably mentally and physically fit, I think that's quite helpful.

Explains his personal decision to avoid support groups.

So you haven't joined a support group or anything like that to talk to other people?

No I haven't, no I haven't done that no. I'm actually really quite busy in my work and whilst this is something that's sort of part, you know important to me in my life I don't spend you know sort of a huge amount of time dwelling on it. You know I mean I basically get on with my work and get on with my life and I think if I, may be if I had treatment and you know there were problems attached to the treatment or the condition got so that it was you know worrying me on a daily basis then I might well find it useful to share that experience with other people but I'm not sure, I think that's a very personal decision.

Describes his experience of treatment in Thailand.

I also take a medicine that was prescribed for me. I happen to work a lot, travelling overseas, and I went to see a Thai Chinese doctor, and very interestingly she actually treats or at least has quite a number of prostate cancer men from the west in Thailand who go there after they've been may be diagnosed and treated, and decide that they'd rather live in the sun than you know in our cold climate. I mean may be these are people who actually are quite seriously affected. And they go to her and she provides them with herbal treatments and so on which she claims are quite effective and she's sort of made me up a herbal medicine which she turns into pills.

Comments on the information he gained from American sites on the Internet.

Yes I've had advice from two members of the family. I've had advice from two consultant urologists. I haven't had any advice at all from my GP, in fact my GP, the one that I'm actually registered with is quite often off sick and whenever I go to the GP I tend to see a different doctor each time. So I haven't actually relied on my GP at all for advice other than referrals. But what I have done is to go onto the Internet and I've registered with one of the information services that exists on the Internet. I think it's an American network, and I actually receive each week a list of abstracts of the latest publications on anything to do with urology. In actual fact I would say that 50% of the items on this website are about the prostate and probably a good 2/3rds of those are about prostate cancer. And some of them are really interesting and sometimes if the abstract is sufficiently interesting I then go and read the whole paper, which is quite easy to do.

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

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 he's actually found even though he's 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.