Prostate Cancer

I was down at my local GPs and they were doing a survey on prostate cancer. I went along, had some blood tests, and after a week or two, after the blood test I was told I had a high PSA.

Before I had my PSA test I wasn't given that much information. I just went along and they took several blood samples and I was told that I would be, I would get the information within about approximately a week which I did.

But would you have liked to have had more information about the implications of the results of the test before you had it done? Do you think you needed more information before you had the test done?

I didn't think I needed any more information on the test as I had no problems with my waterworks in the start. I was, I'd been quite a healthy person, I get backache like most people when they get to my age but I've had no trouble with my waterworks at all.

We're in a health scheme at work and we get tested every 2 years. We have a full examination and when you get over 50 one of the tests I have is a PSA which indicates if there's anything abnormal with the prostate. About 6 years ago I went and my prostate, my PSA was up slightly, it was up to about 6.7. The doctor indicated that that was normal, it was a little bit high but he wasn't concerned at the time. We just let it go for 2 years. Subsequently the next 2 years that I went for my medical the PSA had gone up to 7.5, which was a slight increase again. The doctor again assured me that was a little bit over the range but no reason to be concerned. So what they advised me to do, because it was still low in their estimation, instead of waiting 

for the next 2 year "Well Man", was to go in 12 months. Which I duly did and it had gone up yet again to 8 point something. So I went on seeing my own doctor and I said "Well look it's gone high now, they're telling me the range is between 0 and 5; it's 8 so it's gone up progressively - slow though it may be there's something amiss". So it was at this stage that he referred me to the hospital, and I went down to the urology and after tests I had another PSA, it was at this stage that they says "Still nothing much to worry about but we'll have to do a biopsy".
 

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 view point 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. 

Right, perhaps I could start by asking you how you first thought there was a problem, what first made you seek treatment?

Well that's rather unusual because I didn't have a problem. I felt unwell, nothing led me to believe it would be prostate. I went to the doctor who did a blood test and initially it showed that, he then sent it back for a different blood test, trying every avenue and my PSA was only 3.9 which was borderline. 

When you say you felt 'unwell' just general malaise or any specific symptoms?

I'd felt very weak, felt very you know very lethargic, which is not like me. The PSA was only 3.9 but he said he'd do another one in 6 months. I went back in 6 months and it had leapt to 5.4. So he then asked me if I would go and see a doctor at the local hospital.
 

I wasn't told anything about it, initially I didn't even know what the PSA was or what the implications of a high score was or what was a high score, I was just told that a PSA blood test was going to be done and that was it.
 

Before you had the PSA test did you know what it meant or what the implications were or why it was being done?

No only very vaguely and I knew nothing in detail about it. But I only knew that there was an agent produced that could be detected within the blood that would give an indicator whether there was activity in the prostate gland that was irregular or maybe cancerous. So the prostate specific antigen was high in my case, it was 13. 

I'm just quite interested in what people are told before they have the test. Did the GP ever discuss with you what might be done if you had a high PSA test or it was diagnosed as cancer?

No, no at that stage the interest really was to find out what the course of the problem was. I didn't push to find out what could be done. The knowledge of this side of things evolves as time goes on. But certainly at that stage, as far as I can remember it's a little while ago now there was no indication that this & I knew yes it was a test to determine if there was cancer, I knew that, but we did not discuss where we would go if it were. Subsequently it doesn't necessarily mean that it is cancer it would seem because the PSA test is one of those tests that's a little bit vague.
 

It was basically explained to me to see why the urinary flow was so slow in the mornings. It didn't affect me at any other time during the day but certainly it did in the morning. The surgeon that I saw at the time basically said to me 'There's nothing at all wrong with you that we can find,' and they put it down to an emotional problem because prior to that, a year or so prior to that I'd lost my oldest daughter, she'd died. After leaving the hospital, it must've been a week or two later, I went back to the GP who confirmed the hospital's results but did point out that my PSA reading was about the 4 mark, but said in the same sentence &..

Was what the mark?

About 4, about a level of 4. Now PSA at that time meant nothing to me and being rather naive I didn't ask him to explain the significance of PSA. But he did say it was a totally unreliable form of test and it wasn't worth thinking about, gave me some tablets for prostatitis I think.
 

Is this the PSA test?

The PSA test... it was around the 200 numeral Okay, which is high, denoting some cancerous activity in that area. Then as the injections took hold, somewhere after the first injection, may be towards the second injection, the count dropped to 5, from 200 to 5, I couldn't believe it when he said this you know, 'Is that so?', and he said 'Yes it's good news, it's down to 5.' Then the last time I went, a few weeks ago now, the count had dropped again to 1.8.

Oh that's good.

So the injections are working! You know they go alternatively left of your stomach, right hand of your stomach and I've had 3 of those now and the count is down to 1.8. Now this was told to me as I say a few weeks ago, and the doctor said that is very good indeed, good news, the count is normally between 4 and 1, you know, well at 1.8 I'm obviously down at the good end of that.
 

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.