Interview 54
He was diagnosed with prostate cancer in 1997 and had a radical prostatectomy. Five years later his PSA started to rise again so in 2003 he had some radiotherapy and hormone treatment.
A retired doctor, married with 3 children. Ethnic background' White British.
More about me...
He was totally incontinent for the first six months after his prostatectomy. Then the problem started to get better.
He was totally incontinent for the first six months after his prostatectomy. Then the problem started to get better.
I was incontinent from October to the following April, totally urinary incontinent and that of course was a problem easily overcome but it has to be rather in the forefront of your mind because the sort of nappy type pads that I wore had a 40 minute life span. One had to change them in 40 minutes so one had to park the car so if you were going to go shopping you'd be back again into the car within 40 minutes. When I got better [from surgery], I went back to seeing patients, one had to make certain that no interview of a patient lasted more than 40 minutes, 40 minutes almost precisely, and then I had to go and change my pads. If I was lecturing, anything of this sort, I mean I couldn't lecture for more than 40 minutes. I had to find an excuse to disappear. I couldn't go to a cocktail party, you know, if one was going to go to a cinema or anything of that sort, everything had to be worked out in 40 minutes' I was still very pleased I'd had the surgery. I mean I would never have not had the surgery because of it. It was a nuisance but I was beginning to make long term plans about how one was going to deal with this nuisance. It did seem at the time it would be difficult to continue in medicine with such a short sort of urinary span. And a very nice former consultant who I knew, who had exactly the same problem and was left totally incontinent, had heard about this on the grapevine and came round to have a chat. And he said, 'It's really very easy. The whole question is sun' and he said, 'What you've got to do is retire' and he said, 'You buy a house in Spain where you have a lovely patio and you sit in the sun and you're never more than 10 minutes away from the loo.' And he said, 'In the winter you go out to Australia or New Zealand and you spend your winter out there and you just come back to England at Christmas time.' Well, that actually struck me that he must have done very well when he was a consultant but I didn't see my financial resources running to a house in Spain and three or four months of the year in Australia. So I said it was very kind of him to come but I might have to find more simple ways round it. And then suddenly it started to get better.
Did you find it hard to get the pads or was it quite easy?
It was quite easy. They used to arrive by post in a great bundle. I'd got the address of where I'd had the pads when I was in hospital, I wrote to them and I just had a regular, steady order.
He developed bowel problems after he had his prostatectomy.
He developed bowel problems after he had his prostatectomy.
And what was recovery like?
Well, I mean what I call doctors, one collects every complication going. I had bled during the surgery and after the surgery I was totally incontinent, but only urinary incontinent. But my bowels had been altered but not, I'm glad to say to give rise to incontinence. But I developed the symptoms and signs of a mega-colon, which was trying, particularly if the pelvic floor isn't as strong as it was so you have the combination a mega-colon and poor pelvic floor. So that was a bit of a problem. And one has, of course, a very sore bottom when you wake up from the prostate [operation].
Do you mind explaining to other people what a mega-colon is?
A mega-colon is when one's colon is dilated, when you have a mega-colon, so it becomes almost like a reservoir so instead of being a muscular tube which is going to propel the faeces along, it becomes a collecting tank for faeces. Is that a good description do you think?
In practical matters it becomes '?
Practical matters instead of saying well I want to go to the loo, I must go to the loo, one's bowel seems almost never to be properly emptied. But it can become very over-full and so even without being constipated in terms of having hard faeces or that type of problem, one does have a great faecal mass which has to be expelled from time to time. And there's not much muscle power to do the expulsion because the propulsive, the peristaltic power of the colon has rather diminished.
And the side effects, the bowel problem, how long did that go on for?
Still have it. And so that's 6 years.
So that's a permanent'?
Yes, I was just left with that. And then one was, of course, impotent.
The biopsy was painful. He still had blood in his urine and blood in his sperm three weeks later when he had the surgery.
The biopsy was painful. He still had blood in his urine and blood in his sperm three weeks later when he had the surgery.
The biopsy itself was interesting, well I find it interesting because I'd had a chat with my elder brother who'd gone down the same path, you know 10 days earlier, and gone to the same team and I said, “How did you find it?” And he said, “Oh, you won't worry at all, uncomfortable at the worst.” And so I went along feeling, you know, pretty relaxed about it, and my own view was that I had always had a very much higher pain threshold than my brother and was much more pain tolerant. So I thought if he just thought it really was hardly worth calling discomfort it would be exactly the same for me. But in fact it was very painful. I was quite surprised how painful it was. The sort of pain that made you, you know you're lying there all bundled together in the fetal position and one shot up as the pain... and I think the amount of pain people get depends on the size of the prostate, how much distension there is, and how much bleeding there is. If you get bleeding into quite a big prostate you get the capsule stretched and then you do get pain. If you've got a smallish prostate or if you don't bleed [the pain will be less]. I hadn't stopped bleeding from my prostate by the time I had the surgery, whatever it was, three weeks later. I still had haematuria [blood in urine], I still had haemospermia [blood in sperm] and so I think it was the bleeding into the prostate which gives rise to the pain.
That was quite unpleasant and surprising?
Well, one didn't show it after the first initial surprise, but yes, it was unpleasant. I certainly wouldn't suggest that people didn't have trans-rectal ultrasound and biopsy because of it, but one realised in some people it is not terribly easy. And when a few years later I was involved in a research project and the surgeon said in a jolly way, “Well, I think we'll take 36 biopsies from each man” I just said, “Oh no, that's not happening on any account.”
He was totally incontinent for the first six months after his prostatectomy. Then the problem started to get better.
He was totally incontinent for the first six months after his prostatectomy. Then the problem started to get better.
I was incontinent from October to the following April, totally urinary incontinent and that of course was a problem easily overcome but it has to be rather in the forefront of your mind because the sort of nappy type pads that I wore had a 40 minute life span. One had to change them in 40 minutes so one had to park the car so if you were going to go shopping you'd be back again into the car within 40 minutes. When I got better [from surgery], I went back to seeing patients, one had to make certain that no interview of a patient lasted more than 40 minutes, 40 minutes almost precisely, and then I had to go and change my pads. If I was lecturing, anything of this sort, I mean I couldn't lecture for more than 40 minutes. I had to find an excuse to disappear. I couldn't go to a cocktail party, you know, if one was going to go to a cinema or anything of that sort, everything had to be worked out in 40 minutes' I was still very pleased I'd had the surgery. I mean I would never have not had the surgery because of it. It was a nuisance but I was beginning to make long term plans about how one was going to deal with this nuisance. It did seem at the time it would be difficult to continue in medicine with such a short sort of urinary span. And a very nice former consultant who I knew, who had exactly the same problem and was left totally incontinent, had heard about this on the grapevine and came round to have a chat. And he said, 'It's really very easy. The whole question is sun' and he said, 'What you've got to do is retire' and he said, 'You buy a house in Spain where you have a lovely patio and you sit in the sun and you're never more than 10 minutes away from the loo.' And he said, 'In the winter you go out to Australia or New Zealand and you spend your winter out there and you just come back to England at Christmas time.' Well, that actually struck me that he must have done very well when he was a consultant but I didn't see my financial resources running to a house in Spain and three or four months of the year in Australia. So I said it was very kind of him to come but I might have to find more simple ways round it. And then suddenly it started to get better.
Did you find it hard to get the pads or was it quite easy?
It was quite easy. They used to arrive by post in a great bundle. I'd got the address of where I'd had the pads when I was in hospital, I wrote to them and I just had a regular, steady order.
He believes that the government does not encourage men to have the PSA test because of financial reasons.
He believes that the government does not encourage men to have the PSA test because of financial reasons.
Do you want to say a little bit about your views of PSA testing then?
Well, I think that my own view about PSA is that it is a highly political subject and I can understand why it is a political subject. But when we look at it dispassionately, although it's not perfect, in fact it is imperfect, it is more perfect than many screening tests or diagnostic tests which are used and trusted implicitly by the medical hierarchy and by the patients.
My key point about PSA testing is that it has been badly presented, both to the medical profession and through the medical profession to the general public. PSA testing is a better diagnostic test than the cervical smear, it is a better diagnostic test than mammography, there is only one standard diagnostic test, colonoscopy, only one diagnostic test colonoscopy, which is better, and then only when you have a very good rectal surgeon doing it, or rectal physician. The trouble with PSA testing is that you get a lot of false positives. The problems of false positives have been exaggerated. The average patient isn't very disturbed; they have to wait 10 days or so to find out whether the tests are truly false positive or whether they are satisfactory. It is trying for him but it is not devastating. I mean you ought to really see ways in which we can get this done faster, not give up the test.
And you say the main reason, [for not doing PSA testing] you think, is the financial one?
And I think the main reason is a financial one because although the actual PSA test is very cheap, the follow-up test for everybody who is positive is expensive. It is expensive in terms of actual costs of materials, in costs of the time of the radiologists, cost of time of the laboratory and it blocks the radiologist's couch for half an hour or so. And furthermore, if all those false positives were not false positives but actual positives, the theatre, the trouble on theatre time would be very considerable indeed. The urological clinics and lists would be chock-a-block. Instead of being honest with the world, and saying we can't afford this but we've got to find means of affording it, we tell the doctors and the doctors tell the patients that the test is a bad test. A bad test is a test which gives rise to a great many false negatives and the PSA testing gives rise to fewer false negatives than all those other diagnostic tests which have Government support and Government approval. It's cash and the men are being allowed to die because people are saving money by allowing them to die.
He has lived a full and enjoyable life since having treatment for prostate cancer.
He has lived a full and enjoyable life since having treatment for prostate cancer.
The essential object of the treatment of the prostate cancer is not only to give the patient as long a life as possible but a good quality of life. Important is to stay alive, because if you follow a course of treatment which is going to result in death, premature death perhaps, the last 18 months of the illness are going to be very trying. So try and survive for as long as possible. There is nothing which has happened to me, since I've had treatment for my cancer, which has in any way upset me. It's been a nuisance and tiresome but I've lived a very enjoyable and very full life and I'm extraordinarily pleased that I had the surgery. And I look around at those people who didn't have surgery when I had it, and had not such a malignant cancer as I had, and they are now dead and I am alive, going out for a very good lunch today, going to work all day, going out to dinner this evening.
So have you, finally, got any message for those people who might be just newly diagnosed with prostate cancer?
Don't allow people to put you off, they may well tell you terrible stories and I really wouldn't believe them. There are tiresome things you will have to face in life, nuisance problems, but nothing to really upset you. Keep going.
The prostatectomy was not as painful as he had expected it to be.
The prostatectomy was not as painful as he had expected it to be.
I found that you know, the hospital staff, the nursing staff, everybody was very kind and considerate and I felt extremely well and I had no worries about it. But people went out of their way to give me information which they, nothing was hidden, everything. I met the anaesthetist who gave a large number of anaesthetics for prostate surgery and I think, probably, at that time was giving more anaesthetics for prostate surgery than any other anaesthetist in the country. So we had a very friendly talk about it and you know, the problems with anaesthesia in prostate surgery, such as they were, and so I felt very reassured. Well, there was no pre-med, which I hadn't realised, so there were little things that slipped passed, I didn't realise that so far as he was concerned he didn't like his cases to have pre-med so I went down to the theatre quite wide awake. Then had the induction and the anaesthetist said to me, 'Well, this is just like champagne which you'll have drunk rather too much of it, it's a very pleasant feeling.' And I didn't altogether care for the feeling induced, of the feeling brought on by the induction, and I said, 'That champagne is bloody awful champagne' and if I hadn't come round those would have been my last words.
But was that with an injection?
That's right, yes. And then I woke up in intensive care.
And how was that?
Well, I found it much better than I expected. Everybody had talked to me about pain when you wake up and there wasn't a nurse who hadn't come in and sat down and said to me, 'Now I do want to warn you of that' and my surgeon had warned me of this and the anaesthetist. So when I went to sleep I was fully expecting to wake up in considerable pain but I woke up in discomfort, no more. And I had my, I could regulate the amount of analgesic I was getting so that if I had wanted more I could have had more but I didn't want any more. And then there were a massive number of drips going, of course, and oxygen, just the usual intensive care procedure. And a very, very pleasant male nurse was specialing me; he couldn't have been better and very efficient, I thought, forever regulating this and that and putting things into my line, what it was I have no idea.
So how long did it take for you to move back to a regular [ward], were you in a private room or regular ward?
I was in a private room and I was just over 24 hours in the intensive care and then went upstairs. I was still having problems with blood pressure and blood oxygenation because I'd bled during the surgery and I had a fair number of units of blood. But even when I got back to the ward, to my room, my haemoglobin was 7 so I had obviously had quite a biggish bleed.
He decided to have a PSA test because of a family history of prostate cancer. He did not have urinary symptoms.
He decided to have a PSA test because of a family history of prostate cancer. He did not have urinary symptoms.
I've been an advocate of PSA testing for a very long while and I have a family history of prostate cancer. My two uncles and my father; and then my elder brother came to see me because he had been unwell for the last, previous 18 months. Rather surprisingly he had been diagnosed as having hypertension with angina because he was getting chest pain after a meal, but he was going very steadily downhill. And he didn't usually consult me about his medical problems but we have a regime here and so we did everything for him, all the standard tests and it turned out that his PSA was very high. And in fact, the pain he was getting in his chest after meals was because he had secondaries in his sternum and ribs and so when his abdomen became distended by his lunch, then not unnaturally it became painful. And so I thought, 'Well my patients all have a PSA done every year if they are over 50, I had better go and get mine done too.' And that came back positive, not very high, 7.2. So I really referred myself to the laboratory and then referred myself to a radiologist who does trans-rectal ultrasounds and biopsies.
He developed bowel problems after he had his prostatectomy.
He developed bowel problems after he had his prostatectomy.
And what was recovery like?
Well, I mean what I call doctors, one collects every complication going. I had bled during the surgery and after the surgery I was totally incontinent, but only urinary incontinent. But my bowels had been altered but not, I'm glad to say to give rise to incontinence. But I developed the symptoms and signs of a mega-colon, which was trying, particularly if the pelvic floor isn't as strong as it was so you have the combination a mega-colon and poor pelvic floor. So that was a bit of a problem. And one has, of course, a very sore bottom when you wake up from the prostate [operation].
Do you mind explaining to other people what a mega-colon is?
A mega-colon is when one's colon is dilated, when you have a mega-colon, so it becomes almost like a reservoir so instead of being a muscular tube which is going to propel the faeces along, it becomes a collecting tank for faeces. Is that a good description do you think?
In practical matters it becomes...?
Practical matters instead of saying well I want to go to the loo, I must go to the loo, one's bowel seems almost never to be properly emptied. But it can become very over-full and so even without being constipated in terms of having hard faeces or that type of problem, one does have a great faecal mass which has to be expelled from time to time. And there's not much muscle power to do the expulsion because the propulsive, the peristaltic power of the colon has rather diminished.
And the side effects, the bowel problem, how long did that go on for?
Still have it. And so that's 6 years.
So that's a permanent?
Yes, I was just left with that. And then one was, of course, impotent.
He got the results of his PSA test and his Gleason score, and then discussed the treatment options with his surgeon. He decided to have a prostatectomy.
He got the results of his PSA test and his Gleason score, and then discussed the treatment options with his surgeon. He decided to have a prostatectomy.
Then I went back to see my surgeon and of course he by then had my Gleason score from the biopsy. It was a semi-formal interview, we are on friendly terms anyway and he said, 'Well let's look at all these results together' and he said, 'Well, the PSA is excellent, 7.2 and the bone scan looks splendid' and he said, 'Nothing to worry about in the shoulders we've decided. And the MRI, nothing to be seen, and it seems to be the tumour is actually confined to the gland.' And he and I said, 'That's excellent.' And he said, 'You're now 67 and you haven't got any relevant history but I'd like you to have a cardiologist's opinion but if that is alright I think we should go ahead.' Now we discussed, a formal talk on you know, radiotherapy versus surgery or even watchful waiting and he said that in his view this would not be a good one for watchful waiting. And then I thought well, we've been through everything but what about the Gleason and I said, 'Now what about the Gleason score?' And he smiled and said, 'Oh, I wasn't really going to talk about that, don't let's think too much about that' and wrote it on a bit of paper and handed it to me, you see, and it was 8 which as you know, really puts you in a very high risk group. And so I said, 'No, perhaps you'd better not talk about that any more but don't let it interfere with what we ought to do.' It would, of course, rule out radiotherapy as the principal form of treatment.
So in his opinion surgery was really the only option?
In my opinion and his opinion. We were absolutely at one about that.
Did you feel that all the options had been well presented to you at that stage?
Yes, I mean I knew the options and we went through them very thoroughly but very quickly. I mean it was not a long interview but everything relevant was said. It was going over very old ground between us because we'd had similar talks about, you know, very many patients between us before.