Yes and looking back do you think you were given about the right amount of information by the GP?

Yes.

But you’d never read about it [prostate cancer] in the newspapers or have you read about it since?

I’m aware of it but I wasn’t particularly well informed. For instance, when I had an interview with the surgeon at the hospital it came out that in fact he couldn’t prove that any treatment for prostate cancer was any better than having no treatment. He said, ‘Weve been doing this for thirty or forty years but the patients die of something else before weve got evidence that weve helped them.

How did that make you feel?

Well it amused me [laughs], I shall die of something.

Did that piece of information make any difference to your decision to have treatment or not?

No, no I still felt that it was worth having treatment. I felt in the end that so many, so many able people wouldn’t go on giving a treatment unless they believed it was effective even though their data in terms of life extension was very often disrupted by other influences.

Do you think it wouldve been useful to have had that information that were not sure that treatment improves length of life right back at the beginning, before you had the PSA test?

No because I think I should still have wanted to follow the same course and I would think in general that if people had that information early they might very well take the decision not to pursue the issue when I’m inclined to believe they’d do better to get treatment. But then I would, having opted for treatment, wouldn’t I?

I was going to say is that based on any reading or is that based on your sort of?

Essentially I think it’s based on my belief that the medical profession very largely knows what it’s doing and wouldn’t waste its time on a complex treatment unless there was a pretty good chance that it really was helping patients. I did see a television programme about prostate cancer where they had three patients, one of whom had opted not to have treatment, another who’d had a prostatectomy and the third had radiotherapy and each of them was absolutely convinced they had taken the right course.

What does that say to you?

Well I’m afraid it says to me that we tend to cling to our own opinions.

After I’d had those two scans I went back to see the consultant and we discussed the various options for me, having prostate cancer. And the three options that were, well, four options were available, was to do nothing, because I had no symptoms, I was completely symptom free and it wasn’t causing me, I was very fit, no problem at all. So I could have done nothing. I could have had a radical prostatectomy, which is the prostate gland removed by surgery. I could have had radiotherapy, which meant that that would also hopefully have got rid of the cancer. Or I could have had some hormone therapy.

Was brachytherapy mentioned?

It wasn’t at that stage.

As a form of radiotherapy?

It wasn’t mentioned at that time as a form, but it was just tuned into the, the radiotherapy.

And were you given plenty of information at that stage?

I was given information, but I’d also gone through some of that with the senior registrar very early, very early on. So I’d gone through a, a conversation with the senior registrar much before I got to this stage. And w-, the consideration I took at the end of it all was that, that radical prostatectomy, for my age, because 52, was the, was the best chance of cure, or early cure. And also, from, from the consultant, if I went for radiotherapy then in his opinion I couldn’t go back and have surgery later. So I’ve gone for radical prostatectomy and I’ve kept the two jokers, which is the hormone therapy and the, the radiotherapy, up my sleeve just in case things hadn’t worked out.

Did you feel that decision was a joint decision with you and your doctors and the family? Or was it very much your decision?

It was a, it was a decision that I took with my wife and in consultation with, with the consultant. And I think afterwards, even though, you know, he c-, he didn’t, he didn’t actually try to sway me one way or the other, later, after wed had the operation, he actually said to me he would have made the same decision. So it made me feel, feel, quite comfortable that I’d probably made the right decision.

So at that stage did the consultant start to discuss options with you?

Oh he laid it down straight away, yeah because I’m slightly jokey he made it plain that I had to take it seriously, which I was quite happy to do of course, and he wanted to, to chop the prostate out, wanted to operate. And it was coming up to Christmas and that couldn’t be worked in really because hospitals all go a bit, when I say go slow over Christmas that’s unkind, that’s not quite the right word but you know get a bit clogged and so he said, ‘Look why don’t you go and see the radiotherapist, hes got some new ideas. The oncologist radiotherapist? Lets have a look [looks at his notes].

Mm

He did between October, that’s right what he did was, 29th October I saw the specialist, 9th November MRI scan, 15th November bone scan to see I if it had spread, I was surprised at that, and then I saw him on 23rd November same fella. And then I saw my GP on 24th November to double check and the specialist by this stage sent me to the oncologist on the 26th November so that was a busy week wasn’t it?

Can we just go back once more to the decision about the treatment for the prostate cancer. Would you like to summarise how you came to that decision to have the Casodex and the brachytherapy, because you saw a few people?

Yes I chose the hospital I chose because they had a huge radiotherapy department and I didn’t want to have the, the operation which has fairly disastrous side-effects. And I wanted radiotherapy and they’ve got a superb radiotherapy department, it’s local to me and the radiotherapy then I thought meant going down five days a week for six weeks which I was prepared to put up, the last pal who had it had this cancer had this treatment and hes alright. Then I read about brachytherapy and this sounded like the bees knees, this sounded very good but obviously it only applies to certain people. You mustn’t have serious peeing problems because they make them worse and you must have a Gleason below 10, you mustn’t, and it mustn’t have spread elsewhere. But it was great.

And at that consultation did the doctor then discuss possible options that you might choose after that?

Well, the young doctor who told me first, um, the results of the biopsy, mentioned HIFU, which is something I’d never heard of obviously before. And he said that there are three, three options, prostatectomy, which, at my age was an, you know, an indication not to go for that, or radiotherapy of some sort, or this newer HIFU treatment.

Why did he say, because of your age not to go for prostatectomy?

Well, that’s, that’s beyond my knowledge. I think my father was early sixties when he had prostatectomy. My two friends are both similar aged. And I just accepted that. My own doctor in discussion later also said, ‘It is a major surgery and, you know, if theres other ways of going about it they may be preferable.

Did the doctor at that consultation mention the possibility of just monitoring the situation and not taking any aggressive sort of treatment?

They didn’t, they didn’t push that.

Did you feel you had plenty of time to weigh up all the decisions about whether, which treatment you were going to have?

Yes. The natural spacing of the visits to hospital. In the first case, when I had my decision given to me, there was then a natural break whilst the, the two scans were taken. And then very quickly I was then told about radiotherapy. And after that it took another two, about two weeks to meet a, a doctor who would ex-, could explain HIFU.

So you had…

So I had everything else than the HIFU information for quite a long time. So when I then had, well, I, I made actually a questionnaire of items to ask the HIFU specialist. And he explained it very clearly. And I decided that day to go for the HIFU.

And did you feel you were given sufficient information about the nature of the trial?

Yes. I mean any trial is, you’re a guinea pig and, and theres no way out of that. But ones got to balance it against the, what has already gone before. And it appears that around the world about two thousand people have had the ultrasound treatment, and with generally quite good results. And the figures that are claimed for the first five years are f-, are comparable with those of prostatectomy and radiotherapy. And there are certain benefits from the radio-, from ultrasound, which perhaps radiotherapy, in my opinion having thought about it, seems preferable. There is no radiation toxicity in HIFU. And the energy I think is very focused and doesn’t go to other parts of the body.

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.

Then I had my results, they came and they said that they was very sorry but I had prostate cancer and it was pretty aggressive, it was on a scale from I think they said 1 to 9 I had, no 1 to 10, I had 9.

Is that a Gleason score did they say?

Well this is…

They just said 9?

Yeah they just said that it was on a scale of 1 to 9 but they still didn’t know whether they was going to operate or whether I was going to have treatment, other treatment or radio treatment or what so that’s how it was left at the time. But then say what they wanted to do then was to give me an MRI scan to see exactly what was going on there on the pelvis and down there so I went up about, it must’ve been 3 weeks later I managed to have an appointment for an MRI scan.

And then they turned round and said that they’re sorry to say that it had gone to my bone and I said, ‘Well what does that entail because it’s gone to my bone and everything?’ I knew I couldn’t have an operation because the prostate was, it was gone too much.

But then when it had gone to the bone he also turned round to me, this is the specialist, he said that, ‘The best thing now is that well just give you hormone treatment’ which I said, ‘Oh, well to be quite honest with you I said, ‘Well if it’s gone for me bone then, oh he said that it’s only gone to my arm, not to, there was no cancer showing on this other hot spot, but only on the bone on the arm. So I said, ‘Well can you take my arm off? You know, I’m not worried as long as it gets rid of it’, sort of affair and he said, ‘Oh well don’t talk so silly, we don’t need to do that.

When he said I had bone cancer, I’ve never asked too many questions and that was where I would go wrong, really you should ask. And while I thought, once they said it had gone to my bone I was worried. Was that, was that going to spread elsewhere and if it is going to spread elsewhere is that the prostate cancer or is it some other cancer? Or you know those kind of things, I didn’t know anything about. And they turned round and told me that it’s only the prostate cancer and the treatment I’m having for prostate cancer will also treat the bone cancer. So you know that put my mind at ease a lot more because I’m thinking that is doing me well anyway.

So what happened after that, did you go back to the consultant?

Yes, I started then to go to the consultant, he wanted to see me, he gave me a date when oh it was a PSA, I had to go back for a PSA. No the PSA was done by my practice nurse and the blood was sent to the hospital and then I went and was introduced to the prostate cancer nurse, with the consultant together and was telling me then the procedure was, would I be prepared to have hormone treatment because that would be the best at this stage rather than going straight in for chemotherapy but to have this hormone treatment which sounded a bit traumatic at the time but I was prepared to have it.

Were there any other alternatives, did they say you could just do nothing?

The other alternative wouldve been to have had chemotherapy but it was suggested that that was probably not necessary if the hormone therapy worked and I wouldn’t have as much side, there wouldn’t be as many side-effects, a bit easier.

Did you feel at the hospital you were given enough information to make choices about treatment?

No I didn’t get much opportunity for choice really I was, the choice was would you be prepared to take this hormone therapy or not? And the fact that I said yes probably they didn’t go any further with it. If I’d have said no I don’t want it may be then it wouldve been suggested that I went on to do chemotherapy but that wasn’t suggested because I said, ‘Yes I’m quite happy to have the hormone treatment’, despite the fact that I’d heard horrendous stories about the side-effects. And there are side-effects which are not very, are not very easy but…