Yes, I’d play golf with two GPs and they’d had a great debate about PSA tests. And this was before I’d had a PSA test. This was before I was 50. So I was very listening to, you know, what they’d got to say. And, you know, they were completely diverse. One was saying, ‘Well, you should have a PSA test because, you know, that w-, is a sign of there might be something wrong, and we can do something. And the second one said, ‘Well, it, it’s a waste of time because the, the end result is, is no better from those who are having the tests and intervention and those that don’t have anything at all. And that’s where the debate essentially stopped. But I still decided to have the test.

Do you remember reading anything about the PSA test before you went to the GP?

I don’t, I can’t honestly say that I specifically remember reading anything specifically about the test no. I did, I asked the question of the GP and I was told that it was a simple blood test and that’s all I did was make an appointment to go and see the nurse at the surgery and then took, took the plunge.

So did the GP give you any other information about except the fact it was a simple blood test?

No not at all.

He didn’t give you any information sheets about the PSA test?

No I wasn’t handed anything.

Did he tell you how accurate the test was and that sort of thing?

Well I’d sort of gleaned that from the web site as to, as to what, you know theres, on balance it, it can be more accurate than inaccurate but it’s not 100% guaranteed. It’s you know 70-80% hit rate as far as my understanding is concerned and 80% is a pretty good bet [laughs].

Okay so that was your understanding before you had the test?

Absolutely.

So he didn’t hand you any sheets of paper about PSA?

I got nothing given to me.

How long ago was all that?

Well it was initiated about a year ago with my father in law but the actual test was done about 4 or 5 months ago.

It started about 18 months ago when I was working in Washington DC in the States, and I went to a local urologist because I had marginal impotency problems and I wanted him to prescribe Viagra for me, which at the time was difficult to obtain through a GP here. He agreed to do that but then he asked me whether I’d recently had a screening test called PSA and I immediately responded that I’d never heard of PSA and what did it stand for and what was it for? And I don’t think I really took in what he was saying but I agreed to take the PSA test primarily to humour him rather than because I’d really considered all the risks and benefits of taking such a test.

He did examine me with a digital rectal examination at the time and that was normal and since I’d got my Viagra tablets I simply forgot about visiting him. And so I was somewhat surprised about 3 weeks later when he telephoned me about 10 o clock at night at my apartment and said my PSA level was very high, much higher than normal, it was about 9ng per ml and that I should take it very seriously although it didn’t necessarily mean I had prostate cancer and he suggested I have a biopsy straight away. Well I was just about to finish my turn at Washington and go for a months visit to Venezuela and a biopsy wouldn’t have been appropriate. But obviously I did feel a great sense of, well fear I suppose, because this was the first intimation that I might have a problem in this connection. I didn’t really have any symptoms and suddenly I was faced with my own mortality. So it was a most anxious time and I remember rushing round to the book shop and buying 4 books on prostate cancer and reading them up and being absolutely horrified about the treatments on offer. Surgery seemed to me more like butchery than surgery and so I was finding it very difficult to sleep at that time.

These were more PSA tests, they in fact took about a month to come through and each day I was phoning the consultant’s secretary, first of all getting to the hospital switchboard “Could I speak to the consultant’s secretary,” she might have been out and then each time she would have to shuffle through a set of papers to see whether my results were in. Each time it seemed to me like waiting for an order of execution of death and this went on day in day out and feeling this terrible feeling of apprehension, cold sweaty hands, ‘am I going to live, am I going to die kind of feeling.

If PSA is brought up in the course of a medical interview when people are really thinking about other things, they are not going to take it on board. I mean I don’t think at the end of the interview I could have gone out saying PSA stands for Prostate Specific Antigen. I didn’t think of it as a test for prostate cancer. I’m sure he said something at that time but I don’t think I gave informed consent if you like.

And there seems to be a sort of general assumption that for all men the objective will be to live as long as possible and I don’t happen to agree with that viewpoint at all. It may be appropriate for many men, particularly family men, with growing grandchildren and so on, they want to see their grand-daughter getting married or their great grandson getting baptised, whatever. But for other people it will be the quality of life and the quality of life means being, or at least feeling, healthy that’s the more important thing. And I would have liked very much to discuss these kind of issues with a counsellor, possibly trained by the consultant himself or herself.

I wish I had never had the very first PSA test. But it was my own fault, I can’t blame the urologist in Washington, I could have asked for more information or thought about the consequences, it just did not occur to me, it did not seem to be a major thing at the time. It wasn’t presented as a major choice to me and I didn’t think through it.

But for somebody like you it might not have been the right thing to do?

Well I think they’d also have to consider how they would feel about the surgery or the radiation treatment if they were found to have cancer and what kind of decisions they would make. So I think, my principle point is really that it requires a very informed consent in the same way as patients have to give informed consent to say an HIV test, it’s not a question of a GP saying to a patient “Oh if I were you I’d have an HIV test,” they need to be told the consequences, that’s what happens with HIV I suspect it isn’t happening with PSA tests and I think it definitely should. And people should be taken through the worse case scenarios and see how they would cope with that.

Did you feel that it was a joint decision to have the PSA test in the end or was it mainly driven by you?

Oh the PSA test was entirely driven by me, I had to ask for it. And she was quite happy to put it on but she did warn me that it gives false positives and I wasn’t to get sleepless nights if I got a positive test. And as I say I expected to, to have a second test.

But this was the practice nurse, she didn’t say you had to discuss it with the GP, she went ahead and did it?

They, our practice nurses are given pretty good authority, they’re pretty good. yeah and they, you know they’ve been known to say, I’ll have to get the doctor to endorse that but this is what you do, [laughs] they’re very good.

I mean it, it was, it was my final decision, but it wasn’t a decision that I went off and did on my own. It was in combination with my family, with my wife and the GP. And we were all happy that we knew what we were doing, and all, we were all happy that, if I was going to have this PSA test, it could lead to where it did lead. Which is, you know, anxiety, but essentially, hopefully nipping things in the bud, because I didn’t have any symptoms.

You just wanted to make one important point about the PSA test?

I think that the most important thing about the PSA test is that, if you have a PSA test done, you must do something about it. Theres no point in having the PSA test done, because if it comes back abnormal and you ignore it, you might as well not have had it done. So just, you know, the thing to always remember is if you’re going to have that PSA test, it might lead to further investigations, and it might lead you down the route of biopsy and further hospital examinations that you might not want to know about.

So you’re, you’re suggesting that if people have already decided they wouldn’t want to have a biopsy or further treatment, better for them not to have the test?

Yes.

You said your usual GP didn’t encourage you to start with to have a PSA test?

He, he put it very plainly, told me the pros and cons but his advice was quite clear that unless there were clear signs of prostate cancer I should not have the PSA test, he did not think that I should have it done as an investigatory process.

Can you remember the pros and cons at that stage, can you remember any of the points that he made?

Well I think he said that it’s a bit of a blunt instrument, that it’s not actually terribly good at, at predicting whether a man has prostate cancer. I think he went on to say that the investigations that might follow a PSA test were invasive and unpleasant and even if one had a PSA test and did have prostate cancer it might not be picked up by the PSA test and it might give a misleading impression that one did have prostate cancer when in fact one didn’t. And the thing that he said to me, which in fact I’d already read was that a lot of men die with prostate cancer but comparatively few die of prostate cancer. And as I said to you right at the beginning before we started this I, I tend not to want a lot of investigation and that frankly if I got prostate cancer I’m not sure I would want to know because of this point that a lot of men die with it but not die of it. So it didn’t seem to me to be worth investigation, particularly as my Gps advice was not to. Of course he left it entirely up to me but I went along with that.

Some months ago I had what was clearly a urinary infection and I had to go to a local medical unit and they prescribed antibiotics. And then I went to the heath centre and my own GP was away on holiday and I saw another [laughs] GP who is not my usual GP and there was a clear breakdown of communication at that point because my impression of the conversation with him was that he was recommending, he was sending me, or requiring me to have a blood test but that he agreed with my GP that a PSA test wasn’t required. When I turned up for the blood test I was very surprised, in fact I was shocked to find that hed also put me down for a PSA test. I said to the nurse on duty that I wasn’t happy about that because that wasn’t what I thought wed agreed but she was under pressure of time and I had the PSA test much against my will but I, I didn’t feel I should just refuse although in retrospect I wish I had. Anyway I then actually wrote a letter to the health centre drawing attention to this quite severe break in communication and the fact that I thought I hadn’t been treated with a great, with enough consideration. The doctor I saw rang up and said that he was sorry there had been a breakdown of communication but that he had intended me to have the PSA test but I have to say that’s not what my recollection of that conversation was.

And that’s when you had the PSA test without really wanting it?

Without really wanting it and without knowing that it was going to happen. I must say when I went into the nurse to have the blood test for the urinary infection to be told that I also had have a PSA test I found that extremely disturbing and I felt pushed into it and I felt that the nurse was, was under a lot of pressure of time, etc etc but afterwards I felt that I wish I said I’m not having this done without further discussion with my, the GP I saw. But in fact in, now because I had the PSA test and I’ve been told clearly I don’t have [prostate cancer], but also I have to say that without that I wouldn’t have come into contact with the Saw palmetto and so that is the enormous benefit. So now I’m very happy about the way it’s worked out.

Yes

There was a breakdown of communication and it’s water under the bridge, it now no longer matters.