Interview 13

Age at interview: 57

Brief Outline: Has decided not to have a PSA test, mainly because he has no urinary symptoms, and because there is so much uncertainty about the PSA test and the treatments for prostate cancer, and because treatments have serious side-effects.

Background: Occupation' Education advisor. Marital status' married. Number of children' 2. Ethnic background' White British.

He received information about the PSA test when he took part in a university research study.

Yes I was given a range of 4 or 5 different things, there may have been another one which I don't have with me at the moment that is simply where, where we are, in terms of trying to give people who either have prostate cancer or may be considering prostate cancer in relation to symptoms they've got, more information about what the test is about, how it's conducted and what the, what the treatments are, if the indicator is, suggests that this is something that's worth looking at. And I have to say I mean they vary quite considerably in style and in length, the way they're illustrated, some are very densely packed with quite factual information which has a lot of facts and figures and quite a lot of medical terms which I think a lay person might find reasonably off-putting. Others I think do manage to put things in a mixture of text and graphics that are really quite helpful and probably if I had to pick and choose I could put these in a rank order.

There's The Importance, 'Important Messages for Men About Prostate Cancer' produced by the Orchid Cancer Appeal. There is a pre-draft prototype (Thinking about a PSA test), I think this one is an Australian publication, which I like very much actually because I think although clearly the, this is, this is a draft which doesn't have colour and doesn't have very many illustrations I think the balance of text and graphics in this one is likely to appeal and it's not too daunting on the page. This one (PSA Testing for Prostate Cancer' An information sheet for men considering a PSA Test) is altogether too brief I think and it raises in many senses more questions than answers which I certainly think would need to be followed up. I mean it says for example the main treatments for prostate cancer have significant side effects and there's no certainty that treatment will be successful. Well I'd want to know facts and figures, the percentages and age related issues and whether there are other conditions that played a part in success rates and I think in many cases there's, the leaflets on this kind of level, although you know you appreciate the brevity of having something on a single sheet of paper, as I say it raises more questions than it answers and I certainly need to go further before making my mind up. And lastly one this one by Cancerbackup, 'Understanding the PSA test' which I also find, found quite helpful, if just a little bit verbose in points and lacking in illustration. 
 

Thinks he is in a low risk category for prostate cancer. This has made him decide not to have a...

Have you thought at all about the causes of prostate cancer?

I've read a little bit about the causes, they're extremely unclear, very contradictory and quite often a bit idiosyncratic I think. This is an area that clearly you know is not tried and tested yet to the point where I think anyone would come up with conclusions. When you read stuff like that you tend to be swayed by whichever factors are closer to your own lifestyle [laughs]. I mean the fact that I'm white, that I'm vegetarian that I don't you know indulge in kind of you know extremes of diet, that I don't work with, what were the other indications, I don't work with powerful magnets, I don't live under a pylon and all those kind of things. I mean you know you tend to take from those, I guess some solace in the fact that you know that's pushing me towards a category of lower risk. That may be illusory but I think going through that kind of process is probably quite important and quite useful to people, it does help them make their mind up.

He has concluded that the test 'is not good enough' and does not want to become neurotic about...

So having read all that information what sort of message did you go away with?

Well I think what I came away with was the fact that this is a quite finely balanced thing for men of my age as to whether, as to whether this should be something that I would A do myself or B whether the Government should do as a routine part of the National Health Service. And I did kind of mull that over and I'm, probably I think my position changed, having sort of read the stuff and reflected on it after a while. But having made up my mind I think my mind is now made up, and I'd be a person who would not think that at the moment routine testing, screening was something that the NHS should provide, although I wouldn't you know deny people the freedom to pay for it if they felt that it was important to them.

Would you mind spelling out your reasons?

Because I think the test is not good enough to be perfectly honest. I mean it's not a test which is a, you know has a one to one relationship with giving you information that you can reliably act on. It's only an indicator and the indicator is itself on a scale and you know what happens if you are borderline and so on. It seems to me that the testing would need to be so periodic for people who came out with a borderline result of an antigen that it would kind of just loom too largely in their life really compared with all the other, the other comparable conditions that could be screened and tested for. I mean if you're not careful you know you could, you could be having yourself routinely tested for such a variety and array of things that you turn out to be some kind of neurotic Woody Allen figure or Howard Hughes at the worst extreme and I don't want to live with that really.

His father had prostate cancer for years but wasn't aware of it. His father's experience has...

Is there any history of prostate cancer in your family?

Well my father, among the many conditions that he had very late in life was actually diagnosed with prostate cancer but as I say that was in conjunction with 32 other things which an 86-year-old man had. What that suggested to me is that, is actually a counter indication if anything because he wasn't aware that he had prostate cancer and he may well have had it for 30, 35 years without knowing. As far as I know he had no urinary problems that were associated with, with prostate cancer. So if anything the fact that he had it was a counter indication for me that the test would be good.

So that reinforced the idea that it would be a bad thing for you perhaps to have a test?

Or a an unnecessary thing to have yeah.

Because he lived happily till he was old without knowing he had the cancer?

Yes, precisely so yes.

Says that since treatments for prostate cancer have unpleasant side effects he does not want a PSA test at present.

And do you remember what the leaflet said about treatment for prostate cancer?

Yeah that it's, there are various forms of treatment, most of them are unpleasant to some degree and many of them have side effects which you know are quite life affecting. That also is a factor. I mean the problem about all this thing is that there are complexities on all sides it seems to me and prostate cancer itself is quite a complex cancer and I gather a fairly unusual one although I'm by no means an expert in those matters. The fact for example that many men over 50 have, have prostate cancer cells present in numbers that are detectable but not noticeable in terms of every day life and may lie dormant like that for many years to come, is already you know one suggestion that this may be a condition that I don't think that routine screening would necessarily give me information on which I could make a reasonable operational decision. And then the fact that as I've said the PSA test is not a test for prostate cancer as such, it's a test for one of the indicators of prostate cancer and then the fact that the, the various treatments and their combinations are, quite often do bring side effects which are in very high percentages and those percentages suggest to me that I'd rather play the kind of wait and watch game than go for the first indicator of something that may be an indicator of prostate cancer.

So to sum up at the moment you have no symptoms and you decided you wouldn't want to have a test at this stage, can you sum up all the different factors that influenced you?

Well I really, I'm the kind of person who, I generally speaking I do want to know whether I've got a condition or not but I'm always going to balance that with how clear are the indicators going to be, what are the risks and what's the prognosis in terms of the effect of treatment and so on. And I think at the moment so many of those are stacked on the uncertain unpleasant or unsure, unsure side of things as far as prostate cancer is concerned that doesn't persuade me to take a test routinely unless I had quite serious symptoms. I think you know personality and what, the way you think about life philosophically probably plays a part in this. I mean you know I'm not going to be somebody who's going to cling onto life desperately at all costs. I think I have you know definitions that are quite clear in my own mind about what would be tolerable and what wouldn't in terms of you know seeking to maintain my life and I think you know unless a lot of the boxes are ticked then I'll go out and wave people goodbye without going through you know a huge amount of invasive procedures.

Screening may cause unnecessary anxiety, particularly since prostate cancer can be 'unproblematic' or 'dormant', over a considerable period.

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 people's 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 '