PSA test for prostate cancer
Deciding whether or not to have the PSA test
There is still much controversy about the PSA test. One of the men we talked to recalled that he had heard GPs talking on the golf course, and that they completely disagreed about the value of the test.
Discovered that GPs have very different views about the value of the PSA test, but decided to have one anyway.
Discovered that GPs have very different views about the value of the PSA test, but decided to have one anyway.
Yes, I'd play golf with two GPs and they'd had a great debate about PSA tests. And this was before I'd had a PSA test. This was before I was 50. So I was very listening to, you know, what they'd got to say. And, you know, they were completely diverse. One was saying, 'Well, you should have a PSA test because, you know, that w-, is a sign of there might be something wrong, and we can do something'. And the second one said, 'Well, it, it's a waste of time because the, the end result is, is no better from those who are having the tests and intervention and those that don't have anything at all'. And that's where the debate essentially stopped. But I still decided to have the test.
If a man has symptoms some doctors do a PSA test as routine, but experts differ on whether it should be routine or whether men should be counselled and encouraged to make an informed decision beforehand.
Most of the men we talked to had consulted their GP either because they had symptoms or because they had heard about the test and thought it might be a good idea to have one.
Because the test is of uncertain benefit doctors are supposed to inform their patients about the benefits and limitations of the PSA test before one is done. Some of the men said that their GPs had discussed the test and had offered them a useful information leaflet.
His GP discussed the advantages and disadvantages of having a PSA test. He decided not to have one now.
His GP discussed the advantages and disadvantages of having a PSA test. He decided not to have one now.
Okay it was about two years ago that I, I suppose seriously thought about having a PSA test for the first time and at that time my GP gave me literature to take away and read and think about it and again I went back to him, some, some months later. I have to say that [laughs] I was very slow in following all these things up, I think kind of the working life takes over and it was just not a pressing issue so that the whole thing got rather drawn out over a period of time. But eventually we had a sort of more thorough discussion about it and at this stage he talked me very thoroughly through the pros and cons of having the test and the sort of decisions which I needed to make. And up to this point I've still decided not to have the test although I think it's true to say that I'm monitoring my own situation quite closely and every so often I discuss it with my GP again.
Did you feel that it was your decision about the PSA test or were you taking advice from him [the GP]?
I took, I took advice from him in the sense of listening to what, to the pros and cons which, but he was very even handed in that and I felt it was entirely my decision in the end, yes.
Was that how you liked to make the medical decisions?
Yes, yes I suppose you always value the doctor's opinion and I think probably he was a little bit more firm in his advice against the test or the necessity for it but I wouldn't say that he was in any way influencing me, he was very clear on the pros and cons and very clear that it was my decision and I'm very happy that it is absolutely my decision yes.
However, some men recalled little discussion about the PSA test before being tested. A young man, for example, who had recently requested a PSA test, was given no written information or advice.
He asked for a PSA test. He had no symptoms but was tested without getting written information or advice.
He asked for a PSA test. He had no symptoms but was tested without getting written information or advice.
Do you remember reading anything about the PSA test before you went to the GP?
I don't, I can't honestly say that I specifically remember reading anything specifically about the test no. I did, I asked the question of the GP and I was told that it was a simple blood test and that's all I did was make an appointment to go and see the nurse at the surgery and then took, took the plunge.
So did the GP give you any other information about except the fact it was a simple blood test?
No not at all.
He didn't give you any information sheets about the PSA test?
No I wasn't handed anything.
Did he tell you how accurate the test was and that sort of thing?
Well I'd sort of gleaned that from the web site as to, as to what, you know there's, on balance it, it can be more accurate than inaccurate but it's not 100% guaranteed. It's you know 70-80% hit rate as far as my understanding is concerned and 80% is a pretty good bet [laughs].
Okay so that was your understanding before you had the test?
Absolutely.
So he didn't hand you any sheets of paper about PSA?
I got nothing given to me.
How long ago was all that?
Well it was initiated about a year ago with my father in law but the actual test was done about 4 or 5 months ago.
When doctors feel that a test is an important part of investigating symptoms they may not present it as a matter of choice. An elderly man who consulted his GP with symptoms was told it was 'crucial' that he had the test, but he knew very little about it. Another man, in the same situation had been tested for 'prostate problems', but knew little about the test itself.
He did not remember receiving much information about the PSA test. His GP said it was 'crucial' that he had one.
He did not remember receiving much information about the PSA test. His GP said it was 'crucial' that he had one.
Did he [the GP] tell you much about the PSA test before you had it? Did he say what the advantages and disadvantages of having a blood test were?
No aye he never said, you know.
He just said it was a good idea to have it?
Aye he just said it was crucial.
He says he couldn't stress the importance [enough], because of I mean [clears throat] I've had him for years, you know first name terms, he calls me by my first name and that and-and he is he's quite a good understanding how I tick, you know. And he says to me it's crucial, it is awful crucial you going to get this test.
Was it a joint decision to have the PSA test or was the doctor very much pushing you to have it?
He was very much pushing me, He was very much.
Because of the symptoms?
Aye, he took control there, he'd done it, as I told you he done a couple of tests himself, you, where he took blood tests and they sent away urine tests and he was quite, he was quite force, forceful on it you know, he was quite forceful, he says, 'it's important'. He says, 'it's very important, you must get this test'. You know, so I mean if they tell you that, you know that's, that's the time you bring your head down from the clouds.
And say well I better get it done, you know.
A man who asked a urologist in the USA for advice about mild impotence, regretted that he had had a PSA test without understanding the implications.
He had the PSA test primarily to humour his urologist. The result left him feeling extremely anxious.
He had the PSA test primarily to humour his urologist. The result left him feeling extremely anxious.
It started about 18 months ago when I was working in Washington DC in the States, and I went to a local urologist because I had marginal impotency problems and I wanted him to prescribe Viagra for me, which at the time was difficult to obtain through a GP here. He agreed to do that but then he asked me whether I'd recently had a screening test called PSA and I immediately responded that I'd never heard of PSA and what did it stand for and what was it for? And I don't think I really took in what he was saying but I agreed to take the PSA test primarily to humour him rather than because I'd really considered all the risks and benefits of taking such a test.
He did examine me with a digital rectal examination at the time and that was normal and since I'd got my Viagra tablets I simply forgot about visiting him. And so I was somewhat surprised about 3 weeks later when he telephoned me about 10 o clock at night at my apartment and said my PSA level was very high, much higher than normal, it was about 9ng per ml and that I should take it very seriously although it didn't necessarily mean I had prostate cancer and he suggested I have a biopsy straight away. Well I was just about to finish my turn at Washington and go for a months visit to Venezuela and a biopsy wouldn't have been appropriate. But obviously I did feel a great sense of, well fear I suppose, because this was the first intimation that I might have a problem in this connection. I didn't really have any symptoms and suddenly I was faced with my own mortality. So it was a most anxious time and I remember rushing round to the book shop and buying 4 books on prostate cancer and reading them up and being absolutely horrified about the treatments on offer. Surgery seemed to me more like butchery than surgery and so I was finding it very difficult to sleep at that time.
He wished he had talked to a trained counsellor before he had the PSA test.
He wished he had talked to a trained counsellor before he had the PSA test.
If PSA is brought up in the course of a medical interview when people are really thinking about other things, they are not going to take it on board. I mean I don't think at the end of the interview I could have gone out saying PSA stands for Prostate Specific Antigen. I didn't think of it as a test for prostate cancer. I'm sure he said something at that time but I don't think I gave informed consent if you like.
And there seems to be a sort of general assumption that for all men the objective will be to live as long as possible and I don't happen to agree with that viewpoint at all. It may be appropriate for many men, particularly family men, with growing grandchildren and so on, they want to see their grand-daughter getting married or their great grandson getting baptised, whatever. But for other people it will be the quality of life and the quality of life means being, or at least feeling, healthy that's the more important thing. And I would have liked very much to discuss these kind of issues with a counsellor, possibly trained by the consultant himself or herself.
I wish I had never had the very first PSA test. But it was my own fault, I can't blame the urologist in Washington, I could have asked for more information or thought about the consequences, it just did not occur to me, it did not seem to be a major thing at the time. It wasn't presented as a major choice to me and I didn't think through it.
Suggests that having a PSA test requires very informed consent, in the same way that patients...
Suggests that having a PSA test requires very informed consent, in the same way that patients...
Well I think they'd also have to consider how they would feel about the surgery or the radiation treatment if they were found to have cancer and what kind of decisions they would make. So I think, my principle point is really that it requires a very informed consent in the same way as patients have to give informed consent to say an HIV test, it's not a question of a GP saying to a patient "Oh if I were you I'd have an HIV test," they need to be told the consequences, that's what happens with HIV I suspect it isn't happening with PSA tests and I think it definitely should. And people should be taken through the worse case scenarios and see how they would cope with that.
Other men we talked to felt much better informed. They knew about the PSA test and some of them had asked for it. They felt that the decision to have the test was entirely driven by them.
He decided that he wanted a PSA test and requested one from his practice nurse.
He decided that he wanted a PSA test and requested one from his practice nurse.
Oh the PSA test was entirely driven by me, I had to ask for it. And she was quite happy to put it on but she did warn me that it gives false positives and I wasn't to get sleepless nights if I got a positive test. And as I say I expected to, to have a second test.
But this was the practice nurse, she didn't say you had to discuss it with the GP, she went ahead and did it?
They, our practice nurses are given pretty good authority, they're pretty good. yeah and they, you know they've been known to say,' I'll have to get the doctor to endorse that but this is what you do,' [laughs] they're very good.
His GP agreed to his request for a PSA test without much discussion.
His GP agreed to his request for a PSA test without much discussion.
Did you look at the Internet at all before you decided to have the test?
Not specifically about this no I think I'd already sort of, I felt that I was sufficiently informed. And I should also may be say, I mean I didn't go to my GP asking if I should have a test, I went more on the basis of thinking I may as well have one. I have little occasion to visit my GP but thought that I would. And when I basically said to him I thought you know may be I'd have a PSA test you know his attitude was a bit like 'Well yes you know you're of the age when these kind of things are good.' He didn't particularly question if I thought I was ill or nor did he, he didn't try to persuade me to have it or not to have it, he just basically said, 'Well if you think that would be a good idea fine let's do that.'
Did he offer you any written information about the PSA test?
No, no he didn't. We didn't really discuss it in more detail, I mean to be fair I didn't ask for more, I didn't ask for an explanation about exactly what it, how it worked or what it said. 'I read up on that a bit, I think he knows that I have, that I do medical work and perhaps made the assumption that I probably did some of the homework on my own. So I didn't ask for a lot of background or details, as I say I didn't particularly ask for advice on whether the test would be a good idea, whether he thought I should have it, it was more a case of me suggesting it and him agreeing.
Okay so you didn't, he didn't bring up any advantages or disadvantages of having a test, it was more or less alright?
Yes it was businesslike if you like. He didn't, he didn't raise issues in relation to, for or against really he, it was, he just seemed to take it in his stride as the kind of thing that men of my age should probably have.
Some men said that the decision to have a PSA test was very much a shared decision, involving themselves, their GPs and their partners.
The decision to have a PSA test was made with the help of his wife and GP. He knew the test might lead to further investigations.
The decision to have a PSA test was made with the help of his wife and GP. He knew the test might lead to further investigations.
'I mean it, it was, it was my final decision, but it wasn't a decision that I went off and did on my own. It was in combination with my family, with my wife and the GP. And we were all happy that we knew what we were doing, and all, we were all happy that, if I was going to have this PSA test, it could lead to where it did lead. Which is, you know, anxiety, but essentially, hopefully nipping things in the bud, because I didn't have any symptoms.
You just wanted to make one important point about the PSA test?
I think that the most important thing about the PSA test is that, if you have a PSA test done, you must do something about it. There's no point in having the PSA test done, because if it comes back abnormal and you ignore it, you might as well not have had it done. So just, you know, the thing to always remember is if you're going to have that PSA test, it might lead to further investigations, and it might lead you down the route of biopsy and further hospital examinations that you might not want to know about.
So you're, you're suggesting that if people have already decided they wouldn't want to have a biopsy or further treatment, better for them not to have the test?
Yes.
Decision-making can be difficult, particularly if GPs seem to give conflicting advice. One man was told about the pros and cons of having a test but advised by his GP not to have one. When he consulted another GP in the practice, having seen a nurse about a suspected urinary infection, he was dismayed to find that this GP had decided that he should have a PSA test and had asked a nurse to do one. He wondered if this was due to defensive medicine.
His GP advised him not to have a PSA test unless there were clear reasons for suspecting prostate cancer.
His GP advised him not to have a PSA test unless there were clear reasons for suspecting prostate cancer.
You said your usual GP didn't encourage you to start with to have a PSA test?
He, he put it very plainly, told me the pros and cons but his advice was quite clear that unless there were clear signs of prostate cancer I should not have the PSA test, he did not think that I should have it done as an investigatory process.
Can you remember the pros and cons at that stage, can you remember any of the points that he made?
Well I think he said that it's a bit of a blunt instrument, that it's not actually terribly good at, at predicting whether a man has prostate cancer. I think he went on to say that the investigations that might follow a PSA test were invasive and unpleasant and even if one had a PSA test and did have prostate cancer it might not be picked up by the PSA test and it might give a misleading impression that one did have prostate cancer when in fact one didn't. And the thing that he said to me, which in fact I'd already read was that a lot of men die with prostate cancer but comparatively few die of prostate cancer. And as I said to you right at the beginning before we started this I, I tend not to want a lot of investigation and that frankly if I got prostate cancer I'm not sure I would want to know because of this point that a lot of men die with it but not die of it. So it didn't seem to me to be worth investigation, particularly as my GP's advice was not to. Of course he left it entirely up to me but I went along with that.
A breakdown in communication led to him having the PSA test against his will.
A breakdown in communication led to him having the PSA test against his will.
And that's when you had the PSA test without really wanting it?
Without really wanting it and without knowing that it was going to happen. I must say when I went into the nurse to have the blood test for the urinary infection to be told that I also had have a PSA test I found that extremely disturbing and I felt pushed into it and I felt that the nurse was, was under a lot of pressure of time, etc etc but afterwards I felt that I wish I said I'm not having this done without further discussion with my, the GP I saw. But in fact in, now because I had the PSA test and I've been told clearly I don't have [prostate cancer], but also I have to say that without that I wouldn't have come into contact with the Saw palmetto and so that is the enormous benefit. So now I'm very happy about the way it's worked out.
Yes
There was a breakdown of communication and it's water under the bridge, it now no longer matters.
Men's experiences of making decisions about the PSA test reflect the uncertainty about the benefits of the test. Some saw it as a routine test, as 'responsible health behaviour', akin to cervical and breast screening, and recommended that other men their age should consider it, but others emphasised that it is less straightforward than a cholesterol or blood pressure check and that men need to be fully informed and prepared for the consequences if their results are 'abnormal'.
Last reviewed May 2016.
Last updated May 2016.
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