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PSA test for prostate cancer

Why some men have not had a PSA test

Some men living in the UK have not heard of the PSA test or thought about it seriously, while others have thought about it carefully. Here we summarise the views of men we talked to who had either decided not to have the test for the moment, or were still thinking about it (also see 'The pros and cons of a national screening programme for prostate cancer'). 

Some men told us that their GPs had told them about PSA testing while also making it clear that they were not in favour of doing the test without good reason (also see 'Deciding whether or not to have the PSA test' and 'Finding information about the PSA test'). 

A man who thought he was at low risk for getting prostate cancer due to a chromosome condition that affected the level of androgen in the blood, and who had been influenced by articles in the press that were opposed to the PSA test, also listened to the advice given by his GP, so initially decided not to have the test. However, recently he has changed his mind, mainly because of peer pressure, and may have the test during the next few months. 

 

Thinks he is at low risk for prostate cancer but is weighing up the pros and cons of having the...

Thinks he is at low risk for prostate cancer but is weighing up the pros and cons of having the...

Age at interview: 68
Sex: Male
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Good material which lays out the pros and cons very clearly. I wasn't terribly impressed by the arguments that were put forward not to have the test actually, I think they're rather unconvincing arguments and on those grounds alone I think in fact I would today go round to the doctor and say I'd actually like to have the test. The only, the only reason that stops me at the moment is that I have read about a hormonal aspect to the onset of the disease and since I have a relatively low androgen out put or production, for chromosomal reasons, it seemed the risk factors in my case were somewhat less than might be otherwise in spite of my brother who would increase the risk factors [laughs]. And that's really where I stand at the moment, not having made a final decision but I think I'm more, I think I'm inclined to have it rather than not have it, I think it's more than likely that in the next few months I'll go back to my GP and say I'd like to have it.

 

His GP will do a PSA test if asked but made it clear that he prefers not to do the test unless a...

His GP will do a PSA test if asked but made it clear that he prefers not to do the test unless a...

Age at interview: 68
Sex: Male
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Now when, when you went to see your doctor to say that you might be interested in having the test...

Mm

You say you got the idea he wasn't terribly keen on, or wasn't terribly keen for you to have it at any rate?

Yes.

Can you remember if he specifically said that?

He said that, he certainly said that it was not a reliable test unlike some tests one can have, it's not reliable and therefore one has to treat it with great care. He also said that, which is the point that I really don't agree with him on, that it can be a cause of great anxiety to patients. And it could be, it's possible it is but I don't think it would be for me, I don't think whatever the test said would make me particularly anxious. He didn't, I don't think he said anything about the unreliability of different forms of treatment, I think he concentrated more on the unreliability of the test itself. Certainly he said that he would ask for the test to be done instantly in the case of symptoms but in a symptomless situation he was not so keen on it. But he did, he did all the way along say, 'If you'd like it you can have it tomorrow'.

The men who had decided fairly firmly not to have a PSA test in the absence of symptoms gave many reasons. Some, like the man quoted above, thought they were not in a high-risk group.

 

He thinks he is not at high risk of prostate cancer and would be disinclined to have a test...

He thinks he is not at high risk of prostate cancer and would be disinclined to have a test...

Age at interview: 59
Sex: Male
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Yes well I'm in my late 50s, I'm 59 and so I think I'm at that age where I should be taking this issue seriously. I don't see myself as one of the high risk groups in that there's no experience, no history of that in my family or in any close relative, and I'm not in one of the ethnic groups which I see are at high risk. And so I'm, but I'm nevertheless aware of it, I have a lot of friends of mine do it, have a test quite regularly on, may be on an annual basis. I tend to look at these issues rather on the way of a car in a sense I mean some people like taking their cars in for regular maintenance, I'd rather not have something fixed unless it's broke and my general inclination would be to wait until there were symptoms before I acted. And I think, I may be wrong, but again not knowing a great deal about it but just through what we all pick up at our age, it's fairly clear what the obvious first symptoms would be, difficulty or pain in urinating, frequent urinating during the night, more than one has experienced in the past. So I suppose if those things became serious or of course if there was any actual pain then I would go and take this a bit more seriously.
 
 

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

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

Age at interview: 57
Sex: Male
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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.

Some men said that they didn't want to become neurotic or obsessed about their health. They also worried that the PSA test itself was unreliable, giving false positive results (an abnormal test result that occurs when there is no problem) and false negative results (a test result that suggests that all is well when in fact there is a problem). 

 

Has had some urinary symptoms but has decided not to have a PSA test for now because it is not...

Has had some urinary symptoms but has decided not to have a PSA test for now because it is not...

Age at interview: 57
Sex: Male
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And thinking back can you remember the main pros and cons of having the test from that all that information?

I think the main, the main pro of having the test would be that if there was a sign that there may be cancer obviously it would, could lead to earlier treatment and that would clearly be the main pro of having it is that it could lead to diagnosis and may be sort of catching the problem at an early stage. So it's the other side of it that I think was more interesting really because it did seem to me, from what he [the GP] told me and what the leaflet said that there is a huge amount of uncertainty in this test and it isn't anything like as certain as some other tests for various cancers or other illnesses. And I forget, I think something like is it something like even like two thirds of the cases cannot be accurately pinpointed? I got this figure two out of three from somewhere and I can't quite remember what that's, what that's related to [laughs]. Anyway it seemed that in some cases it could suggest that there was a problem which may not be cancer and that could lead to further exploratory tests and treatment which could be actually quite sort of I don't know sometimes painful and other times uncomfortable. It could also lead to a sort of a mental, I've lost the word there, can I just come back to that mental word. 

Worry?

Yes, I suppose, yes, anxiety, yes. So there was that side of the argument that it, and the other side of the argument is that it could actually miss, miss the cancer anyway and so I decided that with all that sort of uncertainty around it and my symptoms not deteriorating that for the time being I wouldn't proceed to the next stage of having the test. My doctor gave me a sort of very brief examination in so far as he was capable of doing which he said suggested no obvious abnormality although I understand that's a fairly.

It was a rectal examination?

That's right yes, is a fairly sort of imprecise thing but it did again sort of put my mind at rest for the moment that, but as I say I remained very uncertain about whether to go ahead and have the test or not. I may well yet do so.
 
 

Worries that the PSA test is unreliable and may give false positive and false negative results.

Worries that the PSA test is unreliable and may give false positive and false negative results.

Age at interview: 59
Sex: Male
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But it's a question I suppose really of whether one does have as it were a prophylactic kind of test and just testing to see whether one does have this antigen. Part of the reason is that I also have to say rather doubt how useful the test actually is, what the information, how useful it is for oneself, what one would do with it. There seems to be... a lot of people who do have high levels of the antigen, in fact don't have cancers. I think I read a statistic somewhere saying that even though it's with symptoms only about 1 in 14 of those in fact were shown to have cancers. And this can I think be a very anxious, a very fearful experience and unless there's a real reason which symptoms showed up, I'd almost rather not expose myself to the possible fear. And then, and there are huge uncertainties obviously, when you suspect that you might have something like this then you think of all the implications in your own life and how it will affect your family and so on and I think these are, I rather think, I like to think, that are unnecessary, unless of course there are clear symptoms which made one have to address the problem.

You mentioned false positives and false negatives?

Mm.

Was that something that came through in the literature that you read?

Yes mostly there were cases where the tests had shown, had read normal but there were, was in fact a cancer. But on the other hand you could argue that those would be picked up by a second PSA test so I suppose once you have had one, I mean it seems to me what you would do, for me the decision flow would be as follows. Wait until there were symptoms, if there were symptoms see how, how serious they were. If they were sufficiently serious take a PSA test, but only that, and see the results. 

 

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

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

Age at interview: 57
Sex: Male
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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.

Men's views were also affected by what they had learnt about the prostate biopsy, an investigation which is usually recommended after an abnormal PSA test result (see also 'Biopsy of the Prostate'). 

 

Says that a raised PSA result may lead to an unnecessary biopsy. Prefers to live life in an ...

Says that a raised PSA result may lead to an unnecessary biopsy. Prefers to live life in an ...

Age at interview: 59
Sex: Male
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Now if the results were normal or slightly increased antigen levels then probably again do nothing, and just wait and see, and take another PSA test, possibly in 6 months time after that. And if things have gone, if the levels have gone much higher then, then, and I think also a digital rectal examination would be a first step to have. I don't, well I wouldn't like to have, to have to have a biopsy, obviously it's painful but again because I'm not entirely sure what the information would do and as I understand it something like 70% of the results, well 70% of the cases of biopsy show there isn't a cancer. So that is reassuring but then it's also to say 70% of people needn't have gone through it.

So one of the main reasons for not having a PSA test at this stage is unnecessary anxiety?

I think that's true. I mean a lot of people who live their life in fear and want to insure against everything and one of the minor, they have sort of an anxious attitude towards life and I think that, I have a sort of sense, this is completely ridiculous really but I sense that this actually can create the condition or very largely and I'd rather live life in a more optimistic way and only take action when it's clearly necessary.
 
 

His GP explained that the PSA test is unreliable and that a false positive result might lead to a...

His GP explained that the PSA test is unreliable and that a false positive result might lead to a...

Age at interview: 60
Sex: Male
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It really came to a head because two men I know quite well were diagnosed with prostatic carcinoma and that and I think a combination of a growing awareness about prostate cancer generally, probably the fact that I'm getting older so you just become more aware of things that may cease to function or not function properly. But the two people that developed it, it was a little bit close to home, and to an extent at the provocation of my wife I think, I decided to see if there was a test that could be done. 

I think you've got to be careful about this because you can become paranoid and get tested for just about anything. So I started in what I thought was a logical place and went to see my GP, who in fact was extremely helpful. And he said, 'Well you can have what's called a PSA test, but I should explain it to you.' And he did and he explained it extremely well because I think I started out by thinking that it was rather like getting your cholesterol tested or just a blood test, I thought it could be just a routine test but I discovered later on that it's no such thing. 

There is a test and as far as I can make out it certainly is not a definitive test, and he was, as I said very good about it and talked me through it in some depth and he had the figures to back up what he said. And it seems to me that you can have a PSA test but it is not a finite measure and so it became apparent that you can actually have a relatively high PSA reading, without having prostatic carcinoma. I then said, 'Well it's, given that you had a PSA test is it more prevalent in older people than say younger people?' and the answer was, 'Probably yes, because it tends to occur more in older people.' He then went onto explain that if you did have a high reading the next stage would really be a biopsy where they took a sample of the prostate itself. And as I said he was very open and honest about it and he said he'd had two patients that had had the biopsy and didn't actually thank him very much for it because it was an extremely painful procedure and invasive. And he also pointed out that although it was a smaller risk it was possible to take a sample of relatively healthy tissue in a biopsy and therefore not turn up the carcinoma at all. 

So he left the decision up to me, which I don't think was avoiding the issue at all, I think he did exactly the right thing, because he was not in a position to say, 'Yes that is a definitive test and it will tell you yes or no whether you should proceed to the next stage.' 

Some men knew that elderly men often have 'latent' prostate cancer where they are not affected by the disease and eventually die of something else. This also influenced their decision not to have the test now.

 

Recognises that men may have prostate cancer but die of something else.

Recognises that men may have prostate cancer but die of something else.

Age at interview: 60
Sex: Male
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And when you were at the GP's did he discuss prostate cancer at all or treatment for prostate cancer?

He didn't discuss treatments for prostate cancer, he discussed to a limited extent the kind of prostatic irregularities that might occur which included hypertrophy which you can exhibit apparently the same symptoms with just straight forward hypertrophy or urinary, urinary tract infection as you can with a carcinoma. So it's, the more probable case if you are exhibiting symptoms it could be just straight forward hypertrophy rather than anything else. Although having said that and looked into a little bit further the incidence of prostatic carcinoma is much wider than I previously thought. But one of the articles I read and something I remembered from it was that, and it's a quote from a particular medical dictionary is that a lot, a very high percentage of older men actually have a prostatic carcinoma, but the phrase that rings in my mind is that they die with it rather than because of it. So you then arrive at a situation where you may well have it but you may not die of it.

Does that influence your decision-making?

It does to an extent because if you, if a high percentage of elderly men actually have it you may outlive the thing altogether and in fact that's apparently what happens in the majority of cases.
 
 

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

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

Age at interview: 57
Sex: Male
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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.

Some men were also aware of the conflicting evidence about whether or not treatment for early prostate cancer prolongs life. They also knew that treatment may cause unpleasant side effects. This persuaded some that they should not have a PSA test unless they had quite serious symptoms.

 

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

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

Age at interview: 57
Sex: Male
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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.
 
 

He knows that treatment for prostate cancer isn't 'foolproof' and that it may be 'quite invasive'.

He knows that treatment for prostate cancer isn't 'foolproof' and that it may be 'quite invasive'.

Age at interview: 62
Sex: Male
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Obviously I've thought about the PSA test because it's been in the newspapers and I've heard people talk about it at work. And my thoughts go like this. I don't feel particularly worried about prostate cancer for myself. I wondered what I would do if I got a negative result i.e. the test was clear and I don't think I'd get any benefit from having an all clear result because I'm not worried about it in the first place. So what I would, if I had the test and got a negative result, which is the most likely, that, you know no gain and a little bit of inconvenience to all concerned, a bit of waste of doctor's time, laboratory time. If I got a positive result I then, as far as I know, would be facing a number of rather awkward decisions about whether to be treated, whether, what, and going through the further tests that are needed before one gets to the treatment. I'd also be worried, wondering about whether it was a false positive result and was the whole thing necessary or not. So on balance it seemed to me that being tested would cause more trouble than not being tested. 

You mentioned the media, do you want to say a little bit more about that?

Yes, the media, I think, is quite prone to pick up a cause like prostate cancer screening, and that's good many ways but the way I was reading the articles is that they seem to be very one, usually one sided, usually for it. And I automatically would ask the question well, what's the other side of the argument? And when I found that that wasn't being very well described or considered in the press I did a bit of reading around for myself and came to the conclusion that there was a down side to being screened, that the test wasn't very reliable, that even if it's positive it doesn't necessarily mean that you're going to suffer from having a prostate, a lump in your prostate, that you can live okay fine with that, with that but the treatment wasn't, isn't foolproof by any means, nor very clear cut and some of it is quite invasive. So it's not necessarily a good thing to be tested.

Last reviewed May 2016.

Last updated May 2016.

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