So you think it’s important that men are informed that treatment for prostate cancer doesn’t necessarily lengthen life?

I think that in the current state of our knowledge it is important that they are told what the consequences are of earlier diagnosis as a result of PSA screening and what difference it makes, that we don’t know what difference it makes to their life expectancy, but that we do know that some of the treatments have side effects, unwanted effects that some men would find very unacceptable. I mean incontinence is embarrassing quite apart from anything else, and quite frankly a bloody nuisance, so certainly one wouldn’t want to go in for something which had that risk attached to it unless there was some pretty clear evidence of benefit on the other side; or anyway that’s my position, I would want to think very carefully before going for a treatment of unproven effectiveness that sometimes causes incontinence.

And impotence you said?

And impotence, yes for some people that will be a more important problem than for others, but I could imagine that incontinence is likely to be a bind for almost any person who experiences it.

Would you like to just summarise why you think theres not a national screening programme for men for PSA testing in this country?

I would say that possibly there isn’t the call for it because somebody has done some research on it that might lead people to believe that unless men were forcibly taken by the back of their head they may not take it up. So that that might be a reason for not doing it. I think that the other reason it possibly is that it isn’t so clear cut, the treatment side, on a lot of occasions as it would be say for a smear test. If you’ve got bad news on the smear test, then you know what you’ve got to do. Hopefully it’s not too late.

But the PSA test?

But, but for the PSA you’ve got all these dreadful alternatives, all of which have possible problems. And the, I mean and probably the most sensible alternative is the surgery but that perhaps has the worst possible side effects. I mean you end up unable to hold your bladder and you’re impotent. It’s so, I mean that’s not all, that isn’t all that pleasant but on the other hand somebody might turn around and say ‘But yes chum but you’re alive.

The principles of screening are based on the idea that you have a test which is simple and reliable and reproducible that can diagnose a common disease which is an important health hazard and as a result initiate treatment at an earlier stage as a result of which deaths from that disease are prevented. So screening by PSA should only be introduced when there are data that such screening stops people dying of prostatic cancer or at the very least improves the quality of their life.

I believe that those data are missing at the moment, we do not have the data to support the notion that PSA screening stops men dying of prostatic cancer. In the meantime though we have to be very, very careful in going down that route for a couple of reasons. Firstly elevated PSA can identify in situ or what I prefer to call latent prostatic cancer. If you do post mortems on men of say 80 who have died of other causes something like 80% of such men will have these latent in situ prostate cancers. You could almost argue that in situ prostate cancer is an inevitable consequence of the ageing process, therefore the detection of in situ prostate cancer as a result of PSA testing is not a triumph, in fact for many men it can be a disaster. It is highly likely that the vast majority of such cases detected would never have announced themselves in a man’s lifetime.

Remember the numbers, 80% of men will eventually have in situ prostate cancer and yet how many men actually develop invasive prostate cancer in this country? I can’t remember the numbers off the top of my head but it’s something like 20,000, out of a population of 20 million so clearly it’s a very small minority. And then what are the potential consequences of coming across these in situ cases? If you do nothing then you leave the man with intense anxiety, an obsessional checking and re-checking and if you do something what is the something? Well many urological surgeons, particularly in America, would advocate radical prostatectomy. Now that’s a pretty big operation, a very significant proportion of such men will end up impotent and incontinent for a condition the majority of which would never threaten that man’s life. So until weve resolved the issues of what is the natural history of in situ prostate cancer and there is a treatment that will prevent deaths from prostatic cancer I honestly think it is irresponsible to advocate PSA testing.

Fine now I’d like to ask you about your views about the screening, in other words inviting healthy men to come to the doctors for a PSA test please?

Well I guess that I’m a bit of a snail when it comes to screening in that as most people know, a screening test can tell you the truth about some serious problem that’s there but it can also mislead you in both directions. A positive test might arise when in fact there is no serious problem, and a negative test might miss a problem that’s actually there. So in both of those directions theres the possibility for doing harm unintentionally and so I think people, particularly people who are feeling perfectly healthy, should be well informed about these limitations of screening tests before they go in for them.

What sort of side effects or possible treatments do you think men should be told about?

Well I’d be worried first of all about the side effects of a positive test, and the biggest side effect is probably anxiety. And it’s, I think, probably not sufficiently taken into account that some people, and I’m one of them, can be quite anxious faced with the result of a test which isn’t certain, and then go on to have other tests which are more invasive, if you like, than a simple blood test. So people need to know about that, but in particular they need to know well if it does turn out that this test identifies a cancer that’s there, a real cancer that’s there, what are the treatment options and what difference do they make to, for example my life expectancy, as one example, and what are the side effects of the treatments as well. And when not enough is known about those one can find oneself being treated for a disease and being labelled as being a cancer sufferer if you like, a good deal earlier than might otherwise have been the case and you want to be very clear that that’s got advantages as compared with, for example, going to your doctor when you’ve got some troubling symptoms, and then the doctor examines you and does things in response to the fact that you’ve gone to the doctor rather than the doctor has offered a screening test in spite of the fact that you appear to be well.

I mean there are some conditions, blood pressure, raised blood pressure is a good example, where you may not have any symptoms and because there are important and effective treatments for them it is a good idea for a doctor to check your blood pressure and see whether it’s raised and if it is, may be to do some further investigations and to invite you to consider going on treatment. Because we know that treating high blood pressure can reduce your risk of stroke, which is a very serious condition. But the situation with PSA screening is not like that yet, may be it will become that, but the evidence that’s so far available doesn’t put it in that class of a screening test at all.

Would you like to comment on the fact that there isn’t a national screening programme then for men, for prostate cancer like there is for women with breast cancer?

Well I know theres a lot of issues about breast cancer and whether the, how useful it is but I wouldve thought that if the PSA test were a categorical black and white test then I would think it would be recommended for everybody because it would be completely clear. But since it’s so contingent it seems and it’s, the information it gives is conditional in some way I don’t know that it would be the right test to offer for everybody because yet again it would only cause possibly unnecessary anxieties.

Why don’t you think there is a national screening programme?

Almost certainly because a lot of the decisions makers agree with my doctor that the false positives are too much of a risk.

Mm what might you think that might, what effect might that have on the population?

Well I think that people, quite a lot of people perhaps might be distressed by the idea that they could have cancer because cancer is alarming. It’s a bit insidious and I think were all a bit aware that at the end of life people very often suffer severe pain towards the end of their life from cancers which are out of control.

Mm so just back on that a little bit, so you think people would worry?

I think it is possible that people who were told they had cancer might fear that it could lead to one of these cancers which spreads around the body. And I think were all aware of people who get cancer in the lymph glands which seems for some reason to be particularly dodgy area to get it. I wouldn’t know why but I suppose it’s because whatever the lymph glands produce spreads around the body and would carry cancer with it.

So you think, just to sum up you think the National Screening Committee decided not to do National Screening because of the uncertainty, because it might cause worry?

I would think that’s very likely to be the case and also cynically because they can save money by not doing it.

Would you like to sum up why you think there isn’t a national screening programme for prostate cancer for men, for PSA testing?

I’ve no idea about the costs of these things but in a sense I think that’s irrelevant because if there were a good, if it were, if we had a good screening test then I would want to see it used if the cost was reasonable. Right okay I think my view is this that the, certainly for people who consider themselves to be a relatively low risk groups and have no symptoms the notion of having a screening test done which is itself only one indicator and not a definite proof of a condition like prostate cancer is already quite a serious argument for not doing it. And I think the fact that even if you do get an antigen result which is on the range there will be borderlines about that which then may give you more anxiety and the necessity for repeated tests which you might otherwise spare yourself if you have no symptoms. And I say that in the context of prostate cancer being a condition which can be present but unproblematic and dormant, stagnant, over a considerable period of time. So all that stacks up for me, although the balance is there that it does need thinking about and balancing, the balance tips in favour of not doing it unless symptoms present.

And you also mentioned that you read about the serious side-effects of treatment, which side effects would you be most worried about?

Well I think certainly impotency and incontinence, especially double incontinence is something that I would not want to go continue living with. Obviously you know peoples views change when they, when they have conditions as they get older and so on but I’m pretty intolerant of not being as well as I am now ‘

And to go back to the subject of screening as you said in this country we don’t have a national screening programme using the PSA test for prostate cancer, what are your thoughts about that?

I think we should keep things a bit as they are for the time being. Obviously we need to really find out how accurate the tests can be because there is a cost implication and you know we shouldn’t really mess around you know playing silly games with, no there is a cost implication so we need to bear that in mind and if we need a test, a national screening test then it’s got to be pretty accurate, it’s got to be able to pay for itself so to speak. So if we are going to test gentlemen from the age of fifty then it’s got to give us really accurate results at least you know weve got to be looking in the area of possibly eighty, eighty five percent accuracy, we can’t ask for one hundred percent you know [laughs]. But that’s what weve got to be looking at, anything below that then it’s almost like throwing money away and we all know the implication of that, the taxes go up and this sort of thing. But so may be we should leave it as it is for the time being until we can actually clarify how accurate the tests can be and then introduce it, possibly starting at 50 and obviously work is going on you know to check things out, a lot of work is going on, people are presenting possibly earlier but people are also more aware, theres a lot less fear, it’s less of a taboo now, cancer, any type of cancer and people are willing to, to submit themselves for tests and go in for check-ups. So yeah I think we should keep it as it is for the time being but with the way work is going on at the moment I can see it becoming a national screening exercise possibly in the next five years.

Yes I’ve talked about it with my wife and I think we have rather similar views about screening tests, that if they’re available as part of a proper programme, that’s a good thing and we take part in them. But if it were a one off individual demand that’s probably not worth having.

But now weve moved onto screening, earlier you were talking about the PSA test in relation to yourself, do you want to say anything else about PSA screening of the whole population?

Yes, again I was interested to compare the advocacy that seemed to be coming from one of the journalists, particularly in the newspapers with the apparent, well as far as I knew the Government’s decision, the Department of Health’s decision not to start a programme of mass screening for prostate cancer. And so I read a little bit more into why such a decision would be taken, or not taken, and it seemed to me that the Government, I can understand, why the Department of Health has not been pushing for a prostate cancer screening programme. That the benefits in that detecting prostate cancer earlier and getting people onto treatment earlier really don’t, those benefits strike me as being pretty slim against the costs and difficulties of running a programme.

Did you know very much about prostate cancer and the PSA test before you developed these symptoms?

I didn’t know much about the PSA test because it’s something that’s come since I stopped clinical; prostate cancer yes, I’ve known about that for many years. I recall as I say in the past, that prostate cancer in terms of men, the only time we knew about it was someone would be admitted with what we would call a spontaneous fracture then, I believe they’re now called non-traumatic factures which is the same difference. The men would come in and nearly always it would be a fracture of the thigh bone, the femur. When you knew about that this man’s life would be thrown upside down, back to front and thered be so little you could do, absolutely nothing. It wouldn’t, the cancer didn’t respond to radiation, it didn’t respond to, it only responded to stilboestrol so it was it was quite a hard job.

It wasn’t uncommon at night in the hospital, you would have men that had prostate cancer, and it could take 11 or up to 20 years to kill them, and some of the latter part of that they’d have really bad pain in their bones which is one of the worst types of pain and no matter how much diamorphine, heroin you gave them it wouldn’t, it wouldn’t stop it. And it was dreadful to see them and their family suffer and that’s why I say, now weve got something, may be it isn’t the best, may be were just on the threshold, but now weve got something we can find out before we fall over in the street and when you get up you say, ‘Oh god I’ve got prostate cancer. What a way to find out. This way at least it’s scientific and it gives individual patients an opportunity to ask the questions based upon the evidence. It’s pretty silly to ask questions after the event. It’s like saying should Lazarus have asked, ‘How do I come back to life?’ when he was dead or somebody said, ‘How do we resuscitate him?’ And I think the question is when you think of it these days, when I started nursing and it’s 1960, if you had a cardiac arrest you died. Now in 2005 the amount of people who are resuscitated and live is round about 60 to 70%, without all that research and all the insight and all the help from doctors, nurses, scientists and patients we would still be in a situation when you said if you had a heart attack you died and I’m sure anyone who sees this interview would say if I was asked to go for blood pressure tests, cholesterol tests, tests on my heart I wouldn’t think they’re thinking going to die, they’re thinking how can they save my life so why not have a PSA test and save your life too?

Would you like to go back to prostate cancer, what is the evidence at the moment about treatments?

Well one of the reasons that there is uncertainty is that prostate cancer is quite common, far more common than people realise, but it doesn’t [always] kill people. In other words, you can die with prostate cancer but not of prostate cancer. So it’s quite important, given that fact, that one is very clear about the quality of the evidence upon which you intervene early with some of the quite radical things which people are intervening with. For example radical prostatectomy, quite a major operation, to remove a prostate with some cancer in it, has side effects. It can cause incontinence, men can become impotent as a consequence of it and then of course it has the risks associated with any large operation, those associated with the anaesthesia or bleeding and so on.

And then there is treatment given with radiotherapy as an alternative to that. There again there are problems which can be associated with the radiotherapy, so some people say, even when they know there is cancer there, well actually let’s just watch the situation and if it does seem to be deteriorating fast only then intervene with one of these more radical treatments. And that uncertainty is currently reflected in the fact that men are participating in this country in a very big controlled trial comparing those three different options, the radical surgery, the radical radiotherapy and active monitoring of the situation. And as a result of that study and other similar studies, although I think the British one is probably the biggest and the best, people like me are going to be in a far better position to take an informed decision if we find ourselves in the circumstances where we do have an early prostate cancer diagnosed. And indeed, if I went to my doctor with symptoms and it did lead to a diagnosis, I think I would want to be invited to participate in that controlled trial. It’s a way of hedging my bets because we don’t know which is best, but also helping to produce the information that will make decision making in future by people in my position more informed than it would otherwise have been.