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Ronny - Interview 42

Age at interview: 65
Brief Outline: Ronny was invited by his GP to be screened for prostate cancer as part of a trial. He discovered he had cancer. He was randomised to have radical surgery (rather than monitoring or radiotherapy) and is pleased with how it went.
Background: Ronny is a retired painter and decorator. He is separated. Ethnic background/nationality' White English.

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Ronny received a letter from his GP in 2007 inviting him to be screened for prostate cancer as part of the ProtecT trial (Prostate Testing for Cancer and Treatment). He was aware of prostate cancer because his brother had already had it, and so Ronny went along. He was not expecting that he would have cancer, but thought he might be able to help others like his brother. The screening and further tests showed that he did in fact have prostate cancer.

 

At this point a decision had to be made about treatment. It is unclear what is the best treatment for prostate cancer or whether to treat it all, because it often progresses very slowly and may cause few symptoms, whereas treatment can cause side effects. It was explained to Ronny that were three different possible courses of action' monitoring (no specific treatment, but active follow-up to check for developments); radiotherapy; or radical surgery (a prostatectomy). He knew he could drop out of the trial at any point, but decided he was happy to be randomised and let the computer decide which treatment he was going to have. He had hoped he might be allocated to the monitoring group, but he was allocated to radical surgery. He feels it was important that he had a good trusting relationship with the research nurse.
 
Ronny decided to go ahead, even though he was quite anxious about hospitals and surgery, and was pleased that it was not nearly as bad as he feared. He recovered quickly, and most of his friends were amazed when they heard he had had surgery, because he hardly seemed to have been away. He has had few side effects, though sometimes wears an incontinence pad as a precaution.
 
Ronny recognises that each person has to make their own decision about whether to take part in a trial, depending on their own views and the condition and treatments involved. However, he is glad he took part, and hopes it might help others in future. He feels the care, support and information he has had have been excellent.
 
 
 

Ronny agreed to be screened for a prostate cancer trial because he thought it might help his...

Ronny agreed to be screened for a prostate cancer trial because he thought it might help his...

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Well, when the letter came through the door and I read it, I nearly threw it away, to be honest. And then I stopped and I looked again and I read it again, and I says, “This is prostate cancer. This is what my brother’s got” you know. And I thought , “Well, I haven’t got it”, as I said earlier, “But if I go round there and I give them some blood, they might find something in my blood that either could help my brother or give them more information of why it’s in the family and different things.” I never ever thought I had it. And that was one of the reasons. If my brother, I think if I hadn’t have known somebody who had had prostate, I would have probably not bothered, you know. And, as I say, I went and I honestly thought that they would say, “Well, you’re fit, you’re all right” you know. But I wasn’t.
 
Has it sort of changed your views at all now about medical research and whether people should take part?
 
I think it depends on the case and, you know. But I suppose it has in a way, because if you can help somebody, if something helps somebody, you know, even if it’s just giving a bit of blood or a bit of advice, you know. It’s, I think they should have more clinical trials, you know. But it’s all money, isn’t it? 
 

Ronny was prepared to let the computer decide which treatment he would have for prostate cancer,...

Ronny was prepared to let the computer decide which treatment he would have for prostate cancer,...

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Did they say to you could choose which treatment you wanted or you could stay in the trial and be randomised? Is that how it worked?
 
Yes, I could have stayed in the trial, yes, and they could have sort of monitored it, you know. Or they could, I think there was radiology. I think they talked about, I think there was an eight-week course and you had to go every day for eight, you know, and they built a shield so they didn’t damage anything else around here, you know. And I thought, “Well, honestly, I don’t fancy that at all”, you know. And, as I say, there was the random surgery. And the girl, the nurse, she says, “Well, my advice, Ronny” - well, she said she can’t advise me and tell us what to do, you know. She says, “The decision’s yours.” She says, but she, once she explained how, you know, she says, “You are quite a fit bloke for your age, and I would think seriously about what you want to do. But…” And that was when I asked her. I says, “What do you normally do? Can you put it on the computer?” And I says, “Is it fairly detailed, you know, detailed what they do? And is it, you know, they didn’t just hoy [throw] it up for you because they need to do some radical surgery on somebody, you know, sort of style?” And she went away. And she came back and she says, “It’s come up radical [surgery].” And I accepted it. And that was the 25th of November. And 13th of December I was sitting up in bed doing crosswords. Unbelievable, I cannot believe it. The night sister shook her head and walked out of the ward. She said, “I don’t believe this.” [laughs].
 
So if the computer, when they did the randomised allocation to which treatment you were going to get if it had come up with one of the other treatments, how would you have felt about that?
 
I would have probably went with them on the monitored. But I didn’t quite fancy the radiology one, you know, because they had to build a shield for you. And I know it sounds petty, like, but every day for eight or nine weeks going into the hospital, you know, I just wasn’t prepared. I just didn’t fancy myself doing that, I couldn’t see myself keeping it up, you know. But I, if the computer had come up with something different I would have probably went with it apart from the radiology one. But if it said random, I would have been, well, I would have been over the moon, wouldn’t I? I would have says, “Oh, great, I don’t have to have an operation, I don’t have to come into hospital.”
 
For the monitoring?
 
Because I had a – aye. I mean I had a, I had never ever been in hospital, apart from football injuries when you’re a kid, and you know. But never stayed overnight or anything, you know, never had an operation. And I thought, “Crumbs, they’re going to take the –” you know. But, as I said, the test, you know, the survey that they were doing is the best thing that ever happened to me. Because if I had, if I had ignored the letter, say I’d said, “Oh, I’m too busy. I cannot be bothered to go round there”, you know, I would have still been walking around with it now, but it would have been five year, five years further on and it might have been even worse, you know.
 
So if you’d been allocated to the radiotherapy group, you feel you would probably have dropped out of the trial?
 
Personally, yes, yeah. I don’t think I would have went with it. I would have came out there and I would have says, “No, I’m not.” You know.
 
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Waiting to hear which group he was in was ‘a long few minutes’. Ronny hoped he’d be in the active...

Waiting to hear which group he was in was ‘a long few minutes’. Ronny hoped he’d be in the active...

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Well, I knew it was only going to be a few minutes, because they went straight on to the main computer. It was a long few minutes, like, you know. And actually what happened was the computer was down when I went on it, you know. And she says, we made a joke of that. I says, “You see this?” and carrying on, and she had to go away and use another computer. And she came back and that’s how it was up, you know. I, as I said, I would have accepted, but I wouldn’t have accepted radiology. I don’t think I could have. It was, I think it was just the inconvenience – well, not the inconvenience, that’s the wrong word. It was having to go there every day for eight - and then again I said, I asked, she said, “It could come back. You could go through all that and it could still come back”, you know. And she explained the monitoring and she explained what radical surgery was, you know. She said, “Them’s your three options. You can have any one of them.” But I went with, well, I says, “Well, I’ll go for the computer”, thinking it would come up with monitoring, and that would take the decision away from me. But it didn’t. It come up with radical [surgery]. So the decision was made for us, you know, which was, in a sense, it made it easier. Because I know computers are not infallible but, you know, they’re, when they’re putting the right information in you should come up with the right answer, shouldn’t you, you know? So I mean I was, I was happy to go with that.
 
So your understanding is they put some information in about your personal case and it came up with the recommendation?
 
They put in all the - well, from what I, the way I take it, they must have put in all the symptoms and everything, all the tests they had done previous to that, you know. And they put it all on the computer and it come up with that. Because I’d done all the biopsies by then, you know, on the prostate. They had took a bit of the prostate away and, you know, and they cut it up, whatever they do with it, you know.
 
Well, I hate computers, you know. But I don’t know why I let, I don’t know why I let the computer make the decision. But I thought, I was putting, I put a lot of trust in the nurse who looked after us, and I knew she wouldn’t just go on the computer and say, “Oh, we’ve got a spare date for the, do a bit of surgery here. We’ll practise on Ronny” you know. But I knew, you know, I knew she would put every detail in that she had to and come back with a genuine - I knew by her face what she was going to say, you know, by the look, I thought, “Oh, yeah.” But I was happy to go along. I accepted her, I trusted her. I trusted her.
 
So there wasn’t a point when, when it came through with surgery that you thought, “Ooh, maybe I’ll drop out now”?
 
No, no. That never crossed my mind, you know. As I say, when they done my pre-ops, two weeks before I went, when they told, actually told us and they actually done all that, I think they thought, “Well, he mightn’t come back”, so they done them all, you know. But, no, I would, I’d made up my mind and I wouldn’t have.
 
Tell me a bit more about that and the thinking that you might not take part. What do you think?
 
Well, all the time I had been going I was a nervous wreck, you know. I was. I was very bad, like, you know, nervous. And they could tell. And we used to joke and God knows what about it, you know.
 
And, how can I say it? It’s, I was getting frightened and more frightened as it got nearer and nearer, because I knew, well, it’s going to have to be something or other, you know. 

FOOTNOTE: Randomised trials are done when we don’t know which treatment is best, in other words when the relative merits and disadvantages of different treatments are uncertain. It is important to realise that in about half of trials, the new treatment will turn out to be better, but in the other half it will turn out to be worse. This means that, going into a trial, everyone, regardless of which of the treatment groups the computer allocates them to, must have similar chances of a good outcome. If, in spite of the treatment uncertainties that the trial has been designed to address, people would strongly prefer one of the treatments being compared, they should not volunteer for the trial. 

People are allocated at random to one of the groups in the trial, often by using a computer programme. Their personal characteristics are not taken into account when they are allocated to one or the other treatment. Random allocation helps ensure we are comparing two very similar groups of patients, so if one group does better than another, it is very likely to be because the treatments being compared have different effects, and not because of differences between the people in the groups. That's why random allocation to the treatment comparison groups is so important. 
 
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