Yes I was given a range of 4 or 5 different things, there may have been another one which I don’t have with me at the moment that is simply where, where we are, in terms of trying to give people who either have prostate cancer or may be considering prostate cancer in relation to symptoms they’ve got, more information about what the test is about, how it’s conducted and what the, what the treatments are, if the indicator is, suggests that this is something that’s worth looking at. And I have to say I mean they vary quite considerably in style and in length, the way they’re illustrated, some are very densely packed with quite factual information which has a lot of facts and figures and quite a lot of medical terms which I think a lay person might find reasonably off-putting. Others I think do manage to put things in a mixture of text and graphics that are really quite helpful and probably if I had to pick and choose I could put these in a rank order.

Theres The Importance, ‘Important Messages for Men About Prostate Cancer’ produced by the Orchid Cancer Appeal. There is a pre-draft prototype (Thinking about a PSA test), I think this one is an Australian publication, which I like very much actually because I think although clearly the, this is, this is a draft which doesn’t have colour and doesn’t have very many illustrations I think the balance of text and graphics in this one is likely to appeal and it’s not too daunting on the page. This one (PSA Testing for Prostate Cancer’ An information sheet for men considering a PSA Test) is altogether too brief I think and it raises in many senses more questions than answers which I certainly think would need to be followed up. I mean it says for example the main treatments for prostate cancer have significant side effects and theres no certainty that treatment will be successful. Well I’d want to know facts and figures, the percentages and age related issues and whether there are other conditions that played a part in success rates and I think in many cases theres, the leaflets on this kind of level, although you know you appreciate the brevity of having something on a single sheet of paper, as I say it raises more questions than it answers and I certainly need to go further before making my mind up. And lastly one this one by Cancerbackup, ‘Understanding the PSA test’ which I also find, found quite helpful, if just a little bit verbose in points and lacking in illustration.

And what sort of information have you looked for, have you been, were you sent any leaflets or booklets from the university?

Yes I was, in fact there was one particular one, I think it was Cancerbackup, which I found the most helpful. What none of them actually did in fact, which I would loved to have seen happen, would be, in a way, just simply draw up a flow chart of the decisions that you make, the decision tree. I mean at what point do you actually decide to have the test, and then at what point do you decide from the results of that test whether you go on to a biopsy, let’s say, and so on.

You mentioned the Cancerbackup booklet?

Yes

Was that about the right amount of information?

I thought it was extremely well laid out, it took you through the, it described the background, it described the issue and then it presented the question of a PSA test in a very balanced way, what the pros and the cons were and then it left you with questions that you had to ask yourself about whether you wanted to do it, if so what you would do with the information. I think that’s the most important thing.

I mean if you take your car to the garage and they say it needs I don’t know a new clutch or something then it’s quite clear you have to do that but here it isn’t so clear because the, the information is not clear cut.

As a result of seeing all this information has it tempted you to follow it up further with a GP or anything like that?

No, not at this stage. I think if I actually started to show any symptoms then I would be straight to the GP and I would want to, I would want to actually state that, that test was available and was there any possibility of me getting it or an equivalent test.

So do you think the PSA tests should be advertised more widely?

Yes I do.

Because you said you didn’t really know about it before?

No I didn’t, didn’t know anything about it. I think far more tests should be, should be advertised more widely and I think they should be available even if you have to pay for them, to go sort of private, private medical care and to be able to pay for the tests. If it’s something that you feel would benefit then it should be something you can do.

So you said you, you did say that if you were offered a PSA test you would have one?

Yes I would yeah, yeah.

Would you actually ask for one or would you wait to be offered one?

No, if I, I’d ask for one if I thought I had any of the symptoms but up to now you know I’ve found no need to because you know it’s like urinating, as you get older it does, you know the flow is not as strong as what it was when you was younger but that’s a natural aging process isn’t it, you know, and nothing to let any alarm bells start ringing.

So you’re sort of still thinking about it and you say that if you were offered one you might?

Oh if I was offered one yes I’d certainly take it. If I had any symptoms I’d go immediately to my GP and you know I’d ask him to carry out some sort of tests or get some advice.

Well the information sheets came and I think there were two or three like tests or options as to possible diagnosis but when you had the tests even if the blood test showed there was a strong possibility that there might be something wrong it didn’t mean that it was. And in the same respect if the blood test was totally okay it didn’t mean that you were okay either. And I find that all a bit pointless. I would want a result or to know, the only way they were really going to know was if there was the start of prostate cancer which presumably would only show through a physical examination.

Oh I would have a test

Right.

I would still have one.

But only if you had symptoms?

No if I was offered one now I would have one.

Oh would you?

Yes but all, my main point was they may, the tests may come back and say yes it does show signs so wed like to carry on and do more tests, which is fair enough, it’s a bit hair raising but that’s fair enough. But on the other hand if it came back as not showing signs it wouldn’t necessarily mean that it was 100% okay.

Right.

So yeah I mean anything that I was offered, any type of medical examination, help, advice or anything I would always accept or take.

Would you?

Yes.

Can you explain why?

Well it may benefit other people and it hopefully would benefit myself.

So even having read all the information about the possible advantages and disadvantages and the possible inaccuracies and possible uncertainty if you were offered a test you’d still have one?

Yes, oh yeah definitely

Because I think I would always sort of think if you went back to the GP or whoever, you know in two or three years time and they said well you were offered this three years ago and you turned it down, if we had done this we might have picked up on it sooner, but perhaps they wouldn’t say that [laughs], I would.

Could you say a little bit more about the sort of information the GP gave you?

Yes there was a general handout which was a sort of one page flier but he had actually gone to some trouble to isolate more statistics and I think one of the reasons he did that was because of the experiences of these two people that he sent for a biopsy who were not entirely friendly towards him any longer, let’s put it that way. and the charts he gave me were very, very expressive and they broke it down into age groupings and it almost got as far as socio economic groupings. And it broke it down into the incidence of PSA testing and those people that went onto have biopsies and the calculations that were concerned with that so it was extremely useful. The other point that he made which I think is a very good one is that the PSA test is extremely valuable if you are diagnosed with prostatic carcinoma because it will help more definitively to identify whether treatment is working. And it appeared to me that that was one of the major uses of the PSA test but only after the carcinoma had been diagnosed and treatment had occurred which I thought was a very good point.

Did he have all this information waiting for you, did he know you were coming to ask about it?

No he didn’t and initially he ran me through it in, not in a brief manner it was fairly, it was fairly structured but his words were, ‘The decision is yours’, but you need to have enough information to be able to take that decision. And so he actually collected some of this data for me and I think he now has that as a de facto standard for people that come in and it was extremely useful. Certainly the one page flier [PSA Testing for Prostate Cancer] gives you the nuts and bolts of the thing but this was much more definitive and allowed you to arrive at a valued decision.

Have you been aware of anything in the newspapers or magazines about the PSA test?

Oh yes, yes I’ve seen quite a lot. The Mail on Tuesday runs health pages and there have been several items over the last few months regarding prostate cancer in men. Three Counties local radio in this area have had awareness days on there, they also produce a very good action pack. May be other local BBC radios do the same thing, I’m sure they do and so therefore contact your local radio. And they also put people in touch with other individuals who can answer questions.

Have you looked at the Internet at all for information?

I did when my colleague at work was diagnosed as having prostate cancer and between us we, we searched the web and he was quite keen at look at alterative forms of treatment and he didn’t want to rush into surgery. And there certainly is a wealth of information available on the web and it’s quite hard to sift it. Which is why good information from your GP I suspect can’t really be bettered. But there is a lot of information available and I think it’s only beneficial for us to understand as much as we can.

And did you say you’ve also looked for a little bit of information about the PSA test on the web?

Yes while I was doing that, because I was having the test at the same time I looked at the arguments for making it a compulsory screening test as for breast cancer or cervical screening and the arguments for and against which helped me to understand a little bit more about the nature of the disease and the possible complications.

Well if I have a question about the PSA I’ll get on line, look on a website, have a poke around, if necessary pick up a phone, ring a urologist and say tell me.

Have you always used the Internet for health matters?

I use the Internet for most matters. I find it, I mean before I was trying to work out how to spell raison detre, I couldn’t work out, couldn’t get a French dictionary so I went on the website and said French phrases and there it was.

So for the PSA test it’s been really helpful?

Anything I’ve used on there, anything at all you go on there. I think the problem is that PSA test information on the website, you have to have some scientific/medical background because it can be gobbledegook and so if somebody goes on there it might be worthwhile to print it off and find a friendly nurse. Now you have to remember that modern nurses, that’s nurses trained probably after 1980 onwards, female nurses don’t have a lot to do with genitourinary conditions and male nurses don’t have a lot to do with gynaecology so if you want to ask this find a nice friendly male nurse, buy him a pint, they always like beer, sit down and have a chat about these things.

Did he, did you have any written information abut the PSA test right at the beginning?

No [laughs] I’m afraid information was, was very short.

Did you come home and search the Internet or anything like that at that stage?

Not at that stage. I mean basically the thing about the PSA test was I think I had about 12, they tested me for 12 different things you know so various blood tests for various things and the PSA was just, was just one of them and it wasn’t really any big deal at all. Of course when I, when the results came back at 4.8 and my doctor was concerned, then I did of course get on the Internet and I learned all about enlarged prostates and of course about prostate cancer. But at no stage, one of the things which I’m concerned about is that at no stage other than through my own research on the Internet did I realise that actually having an enlarged prostate is much more common than having prostate cancer. And you know following all the experiences I’ve had over the last 2 years I was a classic case of having an enlarged prostate. So I went through all the cancer testing and what have you, probably quite properly, but at no stage did anybody want to reassure me particularly about the fact that I probably didn’t have prostate cancer. Nobody said I probably did but the way people acted and the way that all the appointments followed each other in a very rapid succession meant that although nobody said they were very concerned I had prostate cancer it was very obvious, it was implicit in how they were acting that I may well have prostate cancer. Obviously with the benefit of hindsight all the signs were that I didn’t have prostate cancer but I did just have an enlarged prostate.

The majority of the information, probably 100% came from the Internet. I found a number of interesting sites in America and all over the world, I think the most interesting thing that came out of it was the, the help line at the Prostate Cancer Charity in London, I found it extremely interesting and helpful. I had a 45 minute chat with the nurses there who were very factual and very, very helpful. I digested a lot of conflicting information, I learnt about Gleason score, I learnt about the PSA readings, I learnt about how things were affected and I found a little bit, some of it slightly confusing but I was able to, taking sites from all over the world, understand what was going on. I found the DIPEx site by searching and read one or two experiences of what people had been through and all of that information which was gathered together over days really helped me build up a very good library of knowledge.