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Prostate Cancer

The PSA test

Patients discuss their experiences of PSA testing.

Most men we interviewed had PSA tests, either to help with diagnosis, or to monitor the impact of treatment. Most of the men we interviewed were tested when they consulted their GPs with urinary symptoms. However, two men were tested because they were taking part in treatment or screening trials and one man had a PSA test as part of a health scheme at work. Four men had routine tests when they were temporarily living overseas, and others had PSA tests as part of general blood tests when they consulted their doctors for a number of reasons, such as general fatigue, deep vein thrombosis or diabetes. One man was tested because he had a family history of prostate cancer.

 

Explains that he discovered the high PSA after a survey blood test.

Explains that he discovered the high PSA after a survey blood test.

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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I was down at my local GPs and they were doing a survey on prostate cancer. I went along, had some blood tests, and after a week or two, after the blood test I was told I had a high PSA.

Before I had my PSA test I wasn't given that much information. I just went along and they took several blood samples and I was told that I would be, I would get the information within about approximately a week which I did.

But would you have liked to have had more information about the implications of the results of the test before you had it done? Do you think you needed more information before you had the test done?

I didn't think I needed any more information on the test as I had no problems with my waterworks in the start. I was, I'd been quite a healthy person, I get backache like most people when they get to my age but I've had no trouble with my waterworks at all.

 

He decided to have a PSA test because of a family history of prostate cancer. He did not have...

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He decided to have a PSA test because of a family history of prostate cancer. He did not have...

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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.

 

Describes how the problem was discovered after a full check-up and the advice he was given.

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Describes how the problem was discovered after a full check-up and the advice he was given.

Age at interview: 57
Sex: Male
Age at diagnosis: 54
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We're in a health scheme at work and we get tested every 2 years. We have a full examination and when you get over 50 one of the tests I have is a PSA which indicates if there's anything abnormal with the prostate. About 6 years ago I went and my prostate, my PSA was up slightly, it was up to about 6.7. The doctor indicated that that was normal, it was a little bit high but he wasn't concerned at the time. We just let it go for 2 years. Subsequently the next 2 years that I went for my medical the PSA had gone up to 7.5, which was a slight increase again. The doctor again assured me that was a little bit over the range but no reason to be concerned. So what they advised me to do, because it was still low in their estimation, instead of waiting 

for the next 2 year "Well Man", was to go in 12 months. Which I duly did and it had gone up yet again to 8 point something. So I went on seeing my own doctor and I said "Well look it's gone high now, they're telling me the range is between 0 and 5; it's 8 so it's gone up progressively - slow though it may be there's something amiss". So it was at this stage that he referred me to the hospital, and I went down to the urology and after tests I had another PSA, it was at this stage that they says "Still nothing much to worry about but we'll have to do a biopsy".
 
 

Concludes adamantly that he regrets his PSA Test.

Concludes adamantly that he regrets his PSA Test.

Age at interview: 61
Sex: Male
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These were more PSA tests, they in fact took about a month to come through and each day I was phoning the consultant's secretary, first of all getting to the hospital switchboard "Could I speak to the consultant's secretary," she might have been out and then each time she would have to shuffle through a set of papers to see whether my results were in. Each time it seemed to me like waiting for an order of execution of death and this went on day in day out and feeling this terrible feeling of apprehension, cold sweaty hands, 'am I going to live, am I going to die' kind of feeling.

 

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 view point 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. 

 

Describes how his monitored PSA levels raised enough to cause concern.

Describes how his monitored PSA levels raised enough to cause concern.

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I really didn't discover a problem myself because my condition was what I would describe as benign. I go to France annually and when I am there I have a check-up with a doctor in France. And over a three, I think, a three or four year period the doctor noticed that my PSA, this is the Prostate Specific Antigen test that she does routinely, that it had gone up from something like 2 or 3 to 7.

May I just ask, before the doctor did the test, the PSA test did she explain what it meant and what the implications were?

Oh yes, yes I mean she said that anybody over the age of 50 and certainly I'm more than that, ought to have an annual PSA test which she does routinely for elderly people, men anyway in her practice in France.

But at that stage did she explain that if the PSA level was unusually high and if cancer was found what the options would be, did she explain at that stage?

No, no at that stage there was no question of discussing whether my condition was cancerous or not. It was a matter of monitoring the PSA level and to see whether any malignancy would occur. And I understood it to be a routine test, a sort of monitoring test and if the situation warranted it, like the PSA went up some alarming amount then other tests would follow, because it would be an indication that that the prostate was malignant.
 
 

Explains that his cancer was discovered after blood tests for his diabetes.

Explains that his cancer was discovered after blood tests for his diabetes.

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I was quite surprised when I was told that I have cancer in me. You see first of all I was having diabetes in my body.

Diabetes?

Yes diabetes, well they were treating the diabetes then after some time they told me that there is cancer in me again. Oh I was, I mean I wasn't happy at all when I was told that I have prostate cancer.

And so what happened?

It is from testing of that blood that they discovered that there is cancer in me.

 

Describes how he went to the doctor feeling unwell but nothing leading him to believe there were...

Describes how he went to the doctor feeling unwell but nothing leading him to believe there were...

Age at interview: 59
Sex: Male
Age at diagnosis: 59
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Right, perhaps I could start by asking you how you first thought there was a problem, what first made you seek treatment?

Well that's rather unusual because I didn't have a problem. I felt unwell, nothing led me to believe it would be prostate. I went to the doctor who did a blood test and initially it showed that, he then sent it back for a different blood test, trying every avenue and my PSA was only 3.9 which was borderline. 

When you say you felt 'unwell' just general malaise or any specific symptoms?

I'd felt very weak, felt very you know very lethargic, which is not like me. The PSA was only 3.9 but he said he'd do another one in 6 months. I went back in 6 months and it had leapt to 5.4. So he then asked me if I would go and see a doctor at the local hospital.
 

The men we interviewed knew little about the prostate before they consulted their doctors, and very few men were given information about the PSA test, or the implications of an abnormal PSA result, before the test took place. However, some GPs did warn men that the PSA test was unreliable, and some men reported that their GPs were reluctant to conduct tests or investigate the cause of their symptoms. Perhaps this was partly because GPs are aware that the PSA test may give false positive results (results that suggest that cancer is present when it is not), and because of the known serious side effects of treatment.

 

Comments that he was not told anything about the PSA test initially.

Comments that he was not told anything about the PSA test initially.

Age at interview: 65
Sex: Male
Age at diagnosis: 59
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I wasn't told anything about it, initially I didn't even know what the PSA was or what the implications of a high score was or what was a high score, I was just told that a PSA blood test was going to be done and that was it.

 

Comments that he only knew the basics about the PSA test at the time.

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Comments that he only knew the basics about the PSA test at the time.

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Before you had the PSA test did you know what it meant or what the implications were or why it was being done?

No only very vaguely and I knew nothing in detail about it. But I only knew that there was an agent produced that could be detected within the blood that would give an indicator whether there was activity in the prostate gland that was irregular or maybe cancerous. So the prostate specific antigen was high in my case, it was 13. 

I'm just quite interested in what people are told before they have the test. Did the GP ever discuss with you what might be done if you had a high PSA test or it was diagnosed as cancer?

No, no at that stage the interest really was to find out what the course of the problem was. I didn't push to find out what could be done. The knowledge of this side of things evolves as time goes on. But certainly at that stage, as far as I can remember it's a little while ago now there was no indication that this & I knew yes it was a test to determine if there was cancer, I knew that, but we did not discuss where we would go if it were. Subsequently it doesn't necessarily mean that it is cancer it would seem because the PSA test is one of those tests that's a little bit vague.
 

 

Describes his experiences of PSA testing and how he had been told it was unreliable.

Describes his experiences of PSA testing and how he had been told it was unreliable.

Age at interview: 55
Sex: Male
Age at diagnosis: 51
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It was basically explained to me to see why the urinary flow was so slow in the mornings. It didn't affect me at any other time during the day but certainly it did in the morning. The surgeon that I saw at the time basically said to me 'There's nothing at all wrong with you that we can find,' and they put it down to an emotional problem because prior to that, a year or so prior to that I'd lost my oldest daughter, she'd died. After leaving the hospital, it must've been a week or two later, I went back to the GP who confirmed the hospital's results but did point out that my PSA reading was about the 4 mark, but said in the same sentence &..

Was what the mark?

About 4, about a level of 4. Now PSA at that time meant nothing to me and being rather naive I didn't ask him to explain the significance of PSA. But he did say it was a totally unreliable form of test and it wasn't worth thinking about, gave me some tablets for prostatitis I think.

 

Explains that although he had certain symptoms his doctor had been reluctant to request a PSA test.

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Explains that although he had certain symptoms his doctor had been reluctant to request a PSA test.

Age at interview: 56
Sex: Male
Age at diagnosis: 56
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Anyway to return to last September; about a year ago I first asked about a PSA test, and was persuaded then [by the GP] that it wasn't necessary, there was controversy about whether it was sensible and so on. I was given a physical examination, which didn't pick up any abnormality.

So again, nothing happened until earlier this year, about February or March. At this stage I had this cramping or discomfort, and also possibly the stream becoming a little worse, although it's not an enormous problem for me. Knowing what I know now there were other signs, which I could have related if I was a bit more knowledgeable about it, and I suspect I could have forced the issue earlier. But at that stage I was seen again and I asked again about a PSA test, and still my GP thought it was probably a bladder infection which was causing the discomfort that I was having. But he agreed to do a PSA test and of course that's when we found it was an initial score of 59 and no urinary infection and he immediately referred me to a consultant under the two week rule.

Due to the uncertainties surrounding PSA testing and treatments for prostate cancer, it is very important that men who request a PSA test receive balanced information about the pros and cons to assist them in making an informed shared decision about being tested. This information should be provided by their GP or healthcare provider before the PSA test is carried out. The Prostate Cancer Risk Management Programme has written a Patient Information Sheet on PSA testing that should be given to all men considering a PSA test.

Most men seemed glad that they had had a PSA test, and many thought that all men over 50 should be tested (see 'Ideas on PSA screening and testing on demand'). Also, some men described how repeated tests could demonstrate the beneficial effects of treatment. One man was glad that regular PSA testing could monitor the situation, even though cancer had not been confirmed. However, two men were sorry that they had had PSA tests, and they regretted the anxiety caused by the abnormal PSA test result. One of these men did not have cancer diagnosed when he had a biopsy. However, he decided that even if cancer were diagnosed he would not wish to have surgery or other any other treatment because of the possible adverse side effects The other man, who was aged 74, decided that treatment would not necessarily prolong his life but might cause impotence or incontinence, which he feared. Having consulted two specialists he chose 'watchful waiting' rather than any other treatment.

 

Describes how treatment is reducing his PSA level.

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Describes how treatment is reducing his PSA level.

Age at interview: 70
Sex: Male
Age at diagnosis: 68
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Is this the PSA test?

The PSA test... it was around the 200 numeral Okay, which is high, denoting some cancerous activity in that area. Then as the injections took hold, somewhere after the first injection, may be towards the second injection, the count dropped to 5, from 200 to 5, I couldn't believe it when he said this you know, 'Is that so?', and he said 'Yes it's good news, it's down to 5.' Then the last time I went, a few weeks ago now, the count had dropped again to 1.8.

Oh that's good.

So the injections are working! You know they go alternatively left of your stomach, right hand of your stomach and I've had 3 of those now and the count is down to 1.8. Now this was told to me as I say a few weeks ago, and the doctor said that is very good indeed, good news, the count is normally between 4 and 1, you know, well at 1.8 I'm obviously down at the good end of that.
 

 

Discusses how marginal impotency problems instigated a PSA screening.

Discusses how marginal impotency problems instigated a PSA screening.

Age at interview: 61
Sex: Male
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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.

 

Concludes that he would not recommend the test and regretted doing it himself.

Concludes that he would not recommend the test and regretted doing it himself.

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So summing up your view of this PSA test, can you sum up how you feel about the PSA test?

Well you put the right question, I mean basically I wish I hadn't known.

So really you would have preferred never to have had the PSA test?

Yes, yes.

You wish you hadn't known?

Yes, I would have happily lived on in ignorance...

What about younger men, say aged about 50, would you recommend a test for him or not?

I wouldn't recommend it either.

For more information about PSA testing see the Healthtalk - PSA testing website.

 

Last reviewed July 2017.

Last updated January 2014.

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