Interview 23

Age at interview: 62

Brief Outline:

He did not have any urinary symptoms, but in 2001 he asked for a PSA test, which was found to be 5ng/ml. A biopsy was performed and prostate cancer diagnosed. He had a radical prostatectomy. His PSA is now 0.2ng/ml.

Background:

Occupation' Retired IT executive. Marital status' married. Number of children' 2. Ethnic background' White British.

His GP was reluctant to do the PSA test but finally agreed after explaining that the test isn't very accurate.

So the doctor at the end said 'Is there anything else while you're here, I see you so rarely?' And I basically said, 'Well it suddenly came into my mind and I said 'Well look I've got no symptoms, I've got no logic for asking for this except it seems a sensible thing to do, can I have a PSA test?' And his reaction was quite interesting he certainly wasn't very keen on giving me one, he said basically he said, 'Well it's not always accurate and therefore we can raise fears and uncertainties that you know you might not cope with.' His second reason was, 'Well, men generally don't cope with the uncertainty and I've found it creates more negatives than positives, and thirdly if you haven't got any symptoms,' you know, which was my argument, 'why go looking for a problem?' And I suppose it was his, his logic of putting me in this group that all men can't handle problems and that all men can't face issues, without any discussion of how I might deal with it, was just a kind of broad categorisation, so I suppose that was, as is like a red rag to a bull so I thought well I would exercise my rights. So I basically said, 'Well look have I a right to have one?' And he said, 'Definitely'. So I said, 'Well despite all your arguments I would like one,' and well basically he proceeded to do it albeit it was patently reluctantly. And I suppose it's interesting the experience just to quote one example that subsequent to this I recommend it to another man who went to his doctor specifically and was sent home to think about it for a month and come back if he still wanted it. So it's quite interesting that my doctor, whilst anti, others felt even more strongly and even told this particular man to go away for a month and only come back if he was really, you know really wanted it.

After his consultant explained all the treatment options he chose prostatectomy.

I set up an appointment with the consultant urologist, who explained the Gleason score. He then ran through what the options were as he saw it, and at that time he said basically we could look at radioactive implants, which at that time were in the sort of, as he put it, more pilot stage, but people felt that they were successful, and he talked about radiotherapy at the Royal Marsden Hospital which would be daily over 3 weeks. He talked about, as I said earlier, doing nothing, and monitoring it and seeing if it got worse say in a year's time or 2 years' time, and he talked about having a radical prostatectomy which basically would be removing the prostate, and then he ran through some of the negatives about that. He also gave me a booklet which summarised all this and also gave lots of other helpful information about prostate cancer generally and basically suggested that I kind of went away and thought about it and came back to him, fixed an appointment for a week's time and said why don't you go away, look at it, follow it up and then come back with any questions. 

I opted for the radical prostatectomy, I felt at 58 years, I felt hopefully I had a few more years to go and if that was going to remove it, then it was better to have the thing done and dealt with than kind of be wondering with any of the other treatments if having had them it was going to recur in 5 or 6 years time.

He wasn't offered an anaesthetic but thought other men might consider it if faced with a biopsy.

Yes I mean basically I was asked to lie on a couch, to draw my legs almost up to my neck and then the doctor goes in via the rectum in order to feel and examine number 1. And that in itself is not exactly joyful but then.

In order to examine the prostate?

In order to examine the prostate and then obviously accesses via the same route in order to take the samples which sounded a little bit, when it happened they are obviously inserting, and even to this day I never asked what it was [laughs] presumably a machine of some sort and it sounded a bit like a gun going off every time they took one and they moved it slightly, there was just this clicking noise and he said 'That's one more done,' and then obviously was moving round and taking more than one sample. And whilst I say it was not a pleasant experience I mean to be fair I keep using the analogy but going to the dentist isn't always the most pleasant, you get on and do it because that's part of, part of the process. So I mean I wouldn't be totally negative about it. To be fair, they did say this will be uncomfortable, and they did say you know it might be slightly painful but we'll do everything we can to kind of ease that. I have heard of some men who since have explained to me that they did have an anaesthetic in some shape or form. I wasn't offered that and if I'm being asked I don't think it's particularly, you know if I was doing it again I wouldn't particularly say I wanted one. Presumably it was a local anaesthetic they had. But I have heard of some men who offered it and who did have it. I think in most cases it was because they'd had something similar before, knew what it was like and therefore were ready and questioned it. So I guess from an awareness point of view it's something to think about but I certainly wasn't offered it and yes if it happened again I'm not sure that I would be particularly saying I wanted one from that perspective.

When he received his PSA result the GP suggested a digital rectal examination.

So yes had the test, had a phone call a bit later saying would I come back, they wanted to chat about the results of the test which I suppose was the first warning sign that you know they were only doing that because there was a problem. And I can remember at the time even on the phone saying, 'Are you sure you've got the right person [laughs] have you mixed me up because I'm not called by my first name?' and I can remember the woman saying yes and quoting my address back to me and 'You are that person aren't you?' because I think she was worried she'd rung the wrong person. And I said 'Oh yes that's me,' and I suppose that was the first time therefore that it flashed a kind of warning sign. So yes I went back to the doctor he basically said well, I mean he was very non-committal, in his mind he, in my mind anyway in his explanation he was riding the middle road. He said 'The result of the PSA is that it's a score of 5,' he said 'I don't see that as a particular negative, if you were 10 or 20 or higher it would a major, you know I would see it much more seriously so it's up to you if you want to go any further with it you can, but it does indicate that potentially there may be a problem and there may not be a problem. Do you want to follow it through further?' And in which case, and at that point he then explained the kind of next step which in his opinion was that a biopsy. But before then he said, 'Well look while you're here I'd like to examine it physically just to see if it's enlarged, whether in fact from my examination I can add anything to the result of the PSA test that might be helpful at this point in time in us making some decisions about the way ahead.' so he did examine it whilst I was there, not the most joyous experience but [laughs].

A friend encouraged him to have a PSA test even though he had no symptoms.

Yes basically I went for a PSA test primarily due to someone, a friend of mine who every time he met me, when I reached the age of 50, kept saying 'Have you been and had your PSA test?' And his logic was that he knew two or three men who had had prostate cancer and his argument was if only they'd had the PSA test earlier it might have been trapped before it became a kind of major problem. And his logic was that would you, we have our teeth checked regularly, we have our car checked regularly, women have check-ups for cancer, you know why are men so afraid and why don't, don't they go? So I suppose on one hand there was the logic of his argument, on the other hand I'm very much a person who says well why go looking for a problem if there isn't one and if it's not broke why fix it? So basically I filed it away as a good idea'

When he heard that his PSA level was slightly raised his GP was sympathetic and explained that one option was to do nothing about it.

And then when you went back to the GP for the results of the PSA test how did he present the results, in what way?

I think again in 3 or 4 years it's a bit foggy but I certainly felt I didn't come away with any feelings that he'd particularly mishandled it or hadn't you know done it in an unsympathetic way. I mean however he did it he left me certainly with a feeling that there was a problem, he was in some ways ahead, and I didn't, certainly didn't come out of the surgery feeling well that had been mishandled you know.

No and did he tell you what the normal range of a PSA test was, did he explain what the figures meant?

Yes and in fact he was very much of the view that this was a pretty low score and I can remember coming away thinking that certainly one of the options very clearly in his mind was to do nothing. But you know he very much saw well this, this has highlighted something but it's not a big issue.

Having his wife with him when he saw the doctor helped him remember what was said about the options.

My wife did offer to come [to the consultation] but I said I would rather go on my own. She did come to subsequent ones, because I felt there was a strength in having two people because when you get home you don't always remember what you've been told. 'Now what did they say?' you're thinking, whereas two people I think see things from different angles, can ask different questions, so I think there is a plus and I would recommend, even if you're not married or you've got a partner or a friend to go, I think it does help to have two people listening from that point of view. And equally in talking through the options which I did with my wife, I think it helps sometimes to talk, well certainly for me it did, to talk through the options because I think people ask questions and see things from different perspectives. So again I would just suggest the benefit certainly was to me to have someone just to sit and informally chat things through with.