Interview 34

Age at interview: 72

Brief Outline: He had urinary symptoms for about 5 years, and in February 2005 had a PSA test which was slightly raised. After a biopsy, prostate cancer was diagnosed and treated with High Intensity Focused Ultrasound (HIFU). He recovered quickly from the operation with few side effects and little discomfort.

Background: Occupation' Guest house proprietor. Marital status' married. Number of children' 4. Ethnic background' White British.

He went to his GP because he had to pass urine frequently.

Yes. I think perhaps my, the history of my father having a benign condition of prostate made me aware that I might have some problem with my prostate at some stage. And in the last ten years my inclination to urinate at frequent intervals in some cases made me aware that I might be getting this condition. And my doctor was not pushing the idea of a PSA test at any stage. I did mention it to him one time, but he said, 'When things get worse perhaps we can consider it'. And recently I m-, I approached his locum when he was away for a spell and mentioned it again. And she said, 'Well, it's not difficult to arrange. Quite happy to do it'. And I have two friends who just recently have had prostatectomies. And one is our local vicar, and he's been through it and is still recovering from it. And another is a, another friend I've known for thirty years and he seems to have come through that well. And by talking with them it made me aware that, you know, I might be getting to the stage where it wouldn't be a bad idea to, to have it checked up. Throughout our married life I've encouraged my wife to have mammograms because, you know, that's the problem which could affect, could have affected our families years back. And eventually I got round to the idea that I should perhaps have the PSA test. And at that stage approached the doctor and got it arranged.

Comments that PSA results are confusing and that they aren't widely explained to patients.

To date so far have you just had the one PSA test, or has it been repeated?

No, I've had a PSA test just recently. And I have to say that, not very alarming, but it was raised to 10.6, on the most recent one I've had, which was when I agreed to, to the HIFU [High Intensity Focused Ultrasound treatment]. And I phoned one of the doctors who's on the, the HIFU scheme and asked him whether I should be bothered by it in respect of the fact that from the time of the test to the time of my treatment it's a period of two and a half months. And he wasn't alarmist and he wasn't quite totally clear to me as to whether I should be worried. He said the PSA tests have a, a factor of 10 per cent, where they can be inaccurate. And I put the point that my PSA was raised by 50 per cent. And when he said that I said, 'You can read that two ways. It's risen by 30 per cent or it's risen by 70 per cent, because the PSAs can be both, wrong in both ways either way.' So I don't know whether that's a worry. And I don't think I'm quite clear in my mind yet.

I have to say any information I've had about PSA tests has not been as it were explaining to the uninitiated what it means. If I wanted to make it clear to the general population what to worry about with a PSA test, if I could be told that the levels you ought to have are 4, the levels you should be slightly concerned at are 6, and the levels you should be very concerned at are 15 to 30, I'd be better informed about it than I am. I don't think it's something which is widely explained to patients.

I don't really know on what basis doctors read the information from a PSA test. And one's, one's in their hands to say, 'You need something done' or, 'You could very well not need something done'. There's a certain sort of mystique about it [laugh].
 

He was worried that the biopsy might allow cancerous cells to spread throughout his body.

I made the point to a doctor later that if, as some of the diagrams show, cancer travels from the prostate through the blood system to other areas of the body, if you're going to stab something which has a, a cancer e-, element inside it, which is then going to bleed fairly profusely at times [laugh], was that a way of spreading it around? And he said, 'Yes, it's something that one has to accept is a possibility'. And the implications of that to me were, well, you know, if it's the only way of finding whether you have a, you know, a cancer, I suppose that's, you've got to accept.

Was there anything else that worried you about the biopsy?

I think that was the one which worried me most.
 

He was concerned that the biopsy might have allowed cancerous cells to get into his sperm and pass into his wife during sex.

We were talking about the biopsy again, and you mentioned...

Yes.

...one other worry you had?

Yes.

Can you talk about that a bit?

Yes. It only occurred at the time I got the results from the biopsy, when having been expecting it to be benign, it, it turned out to be positive. And my wife and I had made love a couple of times during the interval between having the biopsy and the results. And it suddenly occurred to me after leaving the doctor who told me about this that I might in some way have contaminated my poor wife with semen which was, it had cancer cells involved. And so fortunately I was able to phone my GP, and spoke to his wife, who was also a doctor. And she put my mind at rest, because she said it could not contaminate a woman in any way, prostate cancer cells. Which was a great relief.

His doctors told him about treatment options, and said he could take part in a trial of high intensity focused ultrasound (HIFU).

And at that consultation did the doctor then discuss possible options that you might choose after that?

Well, the young doctor who told me first, um, the results of the biopsy, mentioned HIFU, which is something I'd never heard of obviously before. And he said that there are three, three options, prostatectomy, which, at my age was an, you know, an indication not to go for that, or radiotherapy of some sort, or this newer HIFU treatment.

Why did he say, because of your age not to go for prostatectomy?

Well, that's, that's beyond my knowledge. I think my father was early sixties when he had prostatectomy. My two friends are both similar aged. And I just accepted that. My own doctor in discussion later also said, 'It is a major surgery and, you know, if there's other ways of going about it they may be preferable'.

Did the doctor at that consultation mention the possibility of just monitoring the situation and not taking any aggressive sort of treatment?

They didn't, they didn't push that.

Did you feel you had plenty of time to weigh up all the decisions about whether, which treatment you were going to have?

Yes. The natural spacing of the visits to hospital. In the first case, when I had my decision given to me, there was then a natural break whilst the, the two scans were taken. And then very quickly I was then told about radiotherapy. And after that it took another two, about two weeks to meet a, a doctor who would ex-, could explain HIFU.

So you had...

So I had everything else than the HIFU information for quite a long time. So when I then had, well, I, I made actually a questionnaire of items to ask the HIFU specialist. And he explained it very clearly. And I decided that day to go for the HIFU.

And did you feel you were given sufficient information about the nature of the trial?

Yes. I mean any trial is, you're a guinea pig and, and there's no way out of that. But one's got to balance it against the, what has already gone before. And it appears that around the world about two thousand people have had the ultrasound treatment, and with generally quite good results. And the figures that are claimed for the first five years are f-, are comparable with those of prostatectomy and radiotherapy. And there are certain benefits from the radio-, from ultrasound, which perhaps radiotherapy, in my opinion having thought about it, seems preferable. There is no radiation toxicity in HIFU. And the energy I think is very focused and doesn't go to other parts of the body.

Explains what is meant by high intensity focused ultrasound (HIFU) and how it is used to treat prostate cancer.

You said you had the scans?

Yes.

Were they all right?

Yes. I got the results after about two to three weeks. And they both were clear, and there was no spread of the cancer to the bones or any other area of the body. And so at that stage I was told that ultrasound would be another alternative treatment and HIFU means High Intensity Focused Ultrasound. And without ever having seen the machine I've tried to have doctors explain to me what it is. But it's, as I understand it, rather like sunlight is if you have a lens. You can make something burn, some, some piece of paper on the floor, by focusing the light into one place. Sound is somehow used by the machine to focus energy on to one particular spot. And the treatment is undertaken by focusing s-, all over the different parts of the prostate to eliminate any sections which may have any cancer cells in it. And the effect of this is also to destroy tissue in the prostate. Initially I was concerned that since one passes water through the prostate, if you've just got a whole lot of scar tissue, how are you going to urinate? But this was explained to me as the body in fact repairs the urethra to some extent to make this, this workable. And, I'll probably get the name wrong, epithelial tissue grows over the, the lining of the destroyed urethra.

And you, and you have to have a catheter for a little while after the operation. Is that right?

Yes. It's normally about up to two weeks. 

And is the ultrasound treatment given to you via the rectum?

Yes, yes. As I understand it, you know, I, the, the simile which is, is given to you in the information is that the focus of the ultrasound treats a section of the prostate about the size of a grain of rice. And if you think of a prostate as being made up of maybe several hundred grains of rice, it obviously takes time to go from one to another and do it. And it is also in-, involved with a computer. Which sounds to me a brilliant idea. The idea of a surgeon trying to hold the thing for three to five hours and pinpoint various parts of one's prostate over that period sounds pretty unlikely to be effective. So if it's computer-controlled that appeals to me.