Interview 28

Age at interview: 57

Brief Outline: No urinary symptoms, but felt tired. His GP suggested a PSA test. The PSA was raised, so he was referred to a consultant, who performed a biopsy. Prostate cancer was diagnosed, and treated with 3D conformal radiotherapy in 2005.

Background: Occupation' Company Director. Marital status' separated. Number of children' 3. Ethnic background' White British.

His GP explained that his PSA level was slightly high for a man of his age.

When I had my second PSA test and it came out with a reading of 8 then I started looking quite seriously and I wanted to know what was going on. 

How did the GP present the result of 8 to you, did she present it explaining what a normal PSA test result might be etc?

She was very good, she's a friend anyway so we have a, a good relationship in terms of she can speak directly to me, she knows the kind of person I am and I found her very, very helpful and very, very sympathetic, almost too sympathetic you know, I prefer to deal in the facts. Other people need a lot of sympathy, I prefer to know the bottom line all the time and if, if it's 5 years or 2 years or you've got to have an operation or you're in trouble I want to know.   

But did she explain what the normal range would be or did you find that out yourself?

Oh yes she explained, she explained. When the first tame, test came up as 4 she said, 'You're slightly high for a man of your age,' I think the, at 54-55 you're supposed to have a reading of about 3.2 and my reading was 4 and she explained that it didn't necessarily mean anything, that it could be other reasons and that we should test again in a year. So I think she, looking at it I can't fault her in any way at all.

Feels frustrated that he can't get a specialist to give him a prognosis.

And my reading came out as 1.9. I'll be having another blood test in 3 months' time when he expects the reading to, to have dropped further. I will be kept under observation every 3 to 6 months. I have locally advanced prostate cancer. I find it very frustrating personally that I can't really obtain a prognosis from anyone as to my life expectancy. People with advanced prostate cancer who have gone through the treatment have a 50% chance of surviving 5 years. I have locally advanced prostate cancer which is slightly down from that but I can't get any specialist, doctor, to give me any kind of prognosis and say look you, we think you should be okay for X amount of years and then I have a target and I can work at it and I can be determined to beat the hell out of it. I find personally that a little bit difficult.
 

He searched internet sites from all over the world. One led him to the Prostate Cancer Charity,...

The majority of the information, probably 100% came from the Internet. I found a number of interesting sites in America and all over the world, I think the most interesting thing that came out of it was the, the help line at the Prostate Cancer Charity in London, I found it extremely interesting and helpful. I had a 45 minute chat with the nurses there who were very factual and very, very helpful. I digested a lot of conflicting information, I learnt about Gleason score, I learnt about the PSA readings, I learnt about how things were affected and I found a little bit, some of it slightly confusing but I was able to, taking sites from all over the world, understand what was going on. I found the DIPEx site by searching and read one or two experiences of what people had been through and all of that information which was gathered together over days really helped me build up a very good library of knowledge.

His PSA will be checked every three months at first and then every six months to check that the treatment has been successful.

What do you expect the PSA to remain now?

The PSA should come down to may be 1.2, 1.4 and stay around there. If it starts to rise again I'm in trouble. 

Have you been told that or have you just read that?

Oh I know that and I've been told that effectively, not in those words, far more delicately put but the only way of keeping track of things is to, for me to have a regular PSA reading and that will continue for 5 years.

Will that be done every 6 months or every?

In the first year I believe it's going to be every 3 months and then it will go to 6 months. I have, I'm a firm believer in the PSA test for obvious reasons. I might well go and have a private PSA test every 3 months just to make sure because it did screen me, it did discover my cancer and I can't understand why after I've had my cancer it's sufficiently good to screen me for the future, why couldn't I have been screened beforehand and logic just tells me, I'm a very logical person, medical opinions may say one thing but logic tells me everything I've gone through that the PSA test is a good way to screen for prostate cancer.

His PSA test was only slightly higher than 'normal' so his GP decided to repeat the test.

Right well I've been going to my doctor for a couple of years because I've felt very tired. I'd been working very hard, very, very long hours and I'd had a number of blood tests all of which had proved negative and she eventually said to me, 'I think it's about time you had a PSA test, you're 54, 55 years old let's see what that comes up with.' that was in March/April 03 and I'd just turned 54, 55. The first results were a reading of 4, I think, 4.2, and my GP said to me she was a little concerned about it, that it was slightly high and we decided that I would be tested again in a year's time. I think she said 9 months first of all. Because of commitments I eventually had the second test about 11 months later which was March/April 04. The result of that test was a reading of 8.2 and at that time my GP expressed some concern at the levels that were shown. There were, there was a possibility that the test was an incorrect reading so we had another test about 5-6 weeks later. She didn't actually know how long she had to leave it, it could've been left I think for, I believe now for about 3 days. Test in July 04 gave a reading of over 10 and alarm bells really rung then and I then went for, was referred to a specialist and went through for a biopsy, privately. The biopsy came up very, very positive, all of my biopsy samples were cancerous, the readings on the Gleason scale from 7 to 9 and alarm bells were really being rung then.
 

He was given an oral painkiller and a local anaesthetic - the biopsy wasn't painful.

Yes, I couldn't stop laughing during the biopsy, I didn't find it painful. I went to a local private hospital. People were very, very good. I wanted to see what the doctor was using for the biopsy. He wouldn't let me look at it, which I thought was quite funny. They were very, very professional; they were very, very good. One of the samples taken, they took 10 samples, the first 5 I really didn't feel anything I had, I was given an oral pain killer, I was given a local anaesthetic, they rubbed a liquid on, and I had an injection. The first 5 samples, there were no problems with at all, I really just felt, not even a pin prick. The 5th, 6th sample was a little sharp, as if you'd caught yourself on a drawing pin, the rest was no problem at all. They were super people, it just wasn't a problem.

Okay. Did you have any side effects as a result of the biopsy?

I passed blood through urine the next day, and that was it, just once, absolutely simple as anything, gave me no fears at all.

After looking for information about treatment options he decided to opt for radiotherapy.

Were you given any more written information at the hospital about prostate cancer and treatments?

Not really no.

So what options were you offered at the hospital by the consultants?

I went along to the hospital with my prostate cancer help pack [which he got from the Prostate Cancer Charity] which gave me all the questions I was supposed to ask. Because of the research I'd done, as soon as they said my Gleason score was 9 I knew that I was in a fairly bad way. And I asked all the relevant questions and I knew that I had to have radiotherapy, that there really wasn't any other option. I wasn't really given much information at all, may be because I had all that information and I was able to talk intelligently about it and I found my consultants at various times not informative enough. I think that I needed to know much more information than perhaps someone else might want to know. I won't criticise them in any way at all but there were no information packs, there was nothing really.

I felt that the after effects of surgery were potentially far greater than the after effects of 3D conformal radiotherapy. If my cancer had not been so advanced I'd have tried to have had brachytherapy. It was just a foregone conclusion to me. I know microsurgery is helping a bit now but I just didn't want to have surgery at my age, in terms of the side-effects, the after effects I felt they would be greater with surgery. In addition how advanced my, my cancer was quite advanced so I really didn't have much option. If they'd operated the surgeon explained to me, the oncologist explained to me very carefully that if they operated there was the possibility that there might be a cancerous cell left behind and then I would have to undergo radiotherapy anyway. So really with the information I gleaned from the Internet and from various other sources it was a forgone conclusion. I wasn't an in between case.

Did your consultant have a view or was it, the decision really made by you?

The consultants were insistent that the decision was made by me. I didn't go back to see the surgeon, consultant, I saw three consultants, a surgeon first of all then the stand in surgeon and then the oncologist and by the time I'd reached the oncologist I knew that I was in a reasonable amount of trouble, and that probably radiotherapy I was 99% certain was the only option for me.

Was active monitoring or watchful waiting ever a consideration?

No, no I, with a Gleason score of 7 and 9 the cancer was too aggressive something had to be done and had to be done fairly rapidly.
 

Says that men over 50 should be screened for prostate cancer because the disease destroys families.

So what's your view about the lack of prostate cancer screening for men in this country?

Quite strong, quite strong. I think that the lack of screening for men's health is less politically expedient than the very, very justified screening for women. And I know that many respected medical people have made very, very conscious decisions about PSA testing. I think that whilst it is accepted that many, the average age of getting prostate cancer is 75, I think that there are many people in my boat who should be screened because the implications are so dramatic and that I can understand the watchful waiting, PSA testing for a men of 75, but for someone of my age, at the age of 54, for someone even younger than myself, I do not feel that the cost of screening is a, I'm sorry I'm not expressing myself correctly, I feel very strongly that men of my age should be screened because the implication afterwards is so great, families are destroyed, jobs are destroyed, I'm paying taxes, I just don't understand it. I cannot understand it at all. If you have a high reading, PSA reading when you're 75 and it does increase with your age, have another blood test in 3 months' time and if it's rising make an objective decision. If you're 75 and you have a slightly rising PSA reading the likelihood is you'll probably die eventually from someone else, from something else. I do not see why we can't make objective decisions in the way that my GP and I made objective decisions with the information that we had from our PSA test. Logic tells me I can't accept it, I just can't accept it.

I just wondered if you wanted to answer, sometimes in the newspapers you read that national screening hasn't been promoted by the Government because of all the uncertainties about side-effects of treatment and about how effective treatment is?

I think that the effectiveness of treatment and that argument is very, very relevant for older people, someone over the age of 75, where perhaps their life expectancy would be less anyway. But if you're someone of my age or even younger if you have prostate cancer from what I can gather it is going to be aggressive. And screening in my case, well not screening but PSA test used in a watchful careful waiting way has been perfect screening and it has stopped a very aggressive cancer and I think that the arguments that are used against screening are too generalised, that there should be screening in place for men of 50, that that screening should be accompanied by very careful considered back up information and I don't think GPs are informed enough, I've read all the papers that a GP gets, I feel that the information that they are given is biased against PSA testing, I think that we almost have a nanny state in that you're not clever enough to be able to make the decision for yourself, and informed choice is very important for people of my age and my GP and my specialist when I persisted with him about my prognosis at the end of all my treatment said to me, 'You would've been in trouble if you'd come to us in a year.' I had no symptoms at all and that sums it up.