Interview 31

Age at interview: 65

Age at diagnosis: 59

Brief Outline: Diagnosed with prostate cancer 1994, hormone treatment and vaccine trial.

Background:

Discusses the possibility that dairy produce is a cause of prostate cancer.

We were talking about causes of cancer and diet in the western world.

I was saying about the book I read where the lady was convinced that dairy produce was the cause of it. She'd done a lot of research in countries where they didn't have dairy products, specifically products from cows and there was very little incidence of breast cancer or prostate cancer and she came back, she'd had in fact 5 lots of breast cancer which had been treated normally, she had her sixth lot which she then decided to treat by cutting out all dairy products and the tumour mysteriously disappeared. So she became convinced that dairy produce was the answer and I must admit I did cut down quite considerably on dairy produce although I haven't cut it out entirely. I know you can exist without dairy produce but I find that it affects your lifestyle again to the extent that I wasn't prepared to go. I think it was a conscious decision, I started having things like soya spreads and stuff which I didn't like, soya milk which I didn't like and so I went back onto having a small amount of milk and things like that. But it's something that, I certainly cut down on the amount of diary produce as a result of reading that research.

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

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.
 

Explains how devastated he was and felt completely uniformed about the cancer.

I was absolutely devastated, they, there was no real information at all, I was basically told 'You've got prostate cancer, it's at an advanced stage,' I said 'Oh does that mean I'm going to die and how long have I got to live?' That was my initial reaction and they said 'Oh well we can't say, there's no way of knowing.' So I went home absolutely devastated.

Stresses the importance of a positive attitude.

I think a positive attitude to the disease is essential, it's so easy just to sit back and give up and think well I've got cancer, I'm going to die and that's it. If you think I've got cancer and I'm not going to die I'm going to fight it I think that's the way that you can beat it, so I think as I say a positive attitude and do everything you possibly can to help yourself, inform yourself as much as you possibly can so that you know what the best options are for you and do it that way. 

Explains he could continue with an active life at first but was concerned that his GP knew little about prostate cancer.

I was leading a very active life. I was playing golf, I was going to the health club and working out three times a week and I though, well okay it's not stopping me doing anything that I want to do, it's not so bad after all. The GPs I worked with kept reassuring me that, you know, it's probably slow growing, it probably won't affect you, you'll probably die of something else, all the things that I've since found GPs rely on to put patients at their ease, because I also found out that most GPs know very little about it. 

Explains how he found fatigue to be a pressing problem that started to affect his lifestyle.

The other big problem that I found throughout my illness is that you do get very fatigued, you get very tired from time to time, well particularly after the first 3 years. I found that I had to stop doing things, I found that I got too tired to play golf so I had to stop playing golf. I couldn't go to the health club any more, that was too tiring and I began to think at that stage well I'm deteriorating you know things are getting worse which I suppose they were because it was affecting, starting to affect my lifestyle.

Were you still working?

That was about the time that I decided to stop working, I was by then 63 years old.

Describes his change to a healthier diet and increase in vitamin supplements.

I've changed my diet quite considerably. I've stopped having virtually all red meat, eating mostly white meat and fish, eating a lot of green vegetables, taking dietary supplements, such things as green tea, eating things with a lot of anti oxidants in them, taking supplements like Vitamin C, Vitamin, well Vitamins A, C and E, zinc, selenium, garlic, all of which I've been taking for several years, which I think helps. Again, I've read up a lot of alternative therapy for prostate cancer and I haven't done anything without knowledge, I've done things in an informed way not just because somebody says 'Well yes this does you good or that does you good,' I haven't just taken their word for it, I've done my own research and because you can get it from the Internet quite easily I've been able to do quite a bit of research into all the things that I decide to take myself. 

Describes the change in his course of drugs.

I've been under two of the local consultants, the first one was the one that put me on Zoladex, it was after 3 years when I started having problems that I was asked would I like to be referred to a second consultant locally to go on a trial of another drug which was flutamide. I immediately said yes because I was then starting to experience bone pain. I was told that the flutamide may help to reduce that. I saw the second consultant and was told that this was a European wide trial of the drug flutamide and would I be prepared to take part. I was again given very little information about what it was, about what the drug did, all I was told was that it would probably cause some breast tenderness and probably growth in the breast as well which it did. I was on that for 9 months

You said you had some problems and that's why you went to the other consultant, was that problems with the drug or problems with pain?

Well that's why I was referred, no I started having pain after 3 years on Zoladex. I had another bone scan and they said 'Well the cancer is spreading and we need to do something else,' which is when I was referred for this trial of flutamide. The flutamide again settled me down and lasted for about 9 months at which time I started getting bone pain back again and the consultant decided that the flutamide was no longer working. I'd since, whilst I was on it I found out more about it, what the drug did, the fact that it could stop working after a certain length of time. I was the told that stopping flutamide would probably have a beneficial effect so we stopped the flutamide and I just went back on the Zoladex. There was a beneficial effect by stopping it, it's strange but stopping the drug can have as beneficial effect as starting on the drug.

Explains that his doctor was not helpful so he sought information ffrom cancer charities.

Were you given any information at that stage?

I was given absolutely no information whatsoever, advanced prostate cancer is what I was told, and I just went away and that's all I knew. Because as I say, I worked for a group of doctors, I immediately, once I'd come to terms with the idea that I'd got a disease like that, I wanted to know what it was all about. Like the vast majority of men I really had no idea where my prostate gland was, what its function was, anything about it so I immediately rang Cancerbackup (now Macmillian Cancer Support), asked them to send me all the information they had about it, also contacted the Prostate Cancer Charity and asked them for all the information they had about it. I spoke to people at both places, asked them the basics of what it was all about, started looking for books on the subject and generally educating myself as to what it was all about. That probably took about 2 or 3 months, at the end of which I was far more informed than I had been and started to think well may be it's not as bad as I thought it was. I only wish somebody would have sat down with me initially and gone through all that with me.
 

Describes how a patch with the right dose of painkiller was found.

Then they put me onto pain patches, 50mg pain patches of Fentanyl. 

I stayed in the hospital for 8 days on these pain patches occasionally being sick but I was on anti sickness tablets as well in the hospital. I had, I didn't realise until I was finally discharged and sent home, still on the patches that there was a pattern to it and that it was immediately after a new patch was applied which they're applied every 3 days, it was immediately after a new patch was applied that I felt sick again. 

Yes you put a new patch on and you immediately get a high dose of the painkiller and it was that high dose that was making me feel sick again so I was being sick immediately a new patch was put on and then it was gradually getting into my body and I wasn't sick any more. So realised that it was the new patch that was making me sick so I was going away to have a holiday with my daughters, went to see my GP and said 'What shall I do because I'm being sick you know every time I put a new patch on?' So he said 'Well I suggest you don't stop the pain patches whilst you're away on holiday because we don't want you to have a lot of pain while you're away, see how you go.' But I said 'Well what about reducing the pain patches to 25 mg?' which is the smallest dose you can have?' So he agreed with that and in fact I started having 25mg pain patches just before I went away for the holiday. I found that they didn't make me sick so I was okay while I was away on holiday. When I came back I thought well I don't want to be on these pain patches permanently.

Describes the strontium injection and its use as pain control.

Just to digress slightly in the meantime I'd been back to see the oncologist because of the pain and he suggested that I have a strontium injection which is a radioactive injection. I had the strontium injection the week before I went away on holiday, when I came back from holiday I realised that that should've then started to work so I suggested to my GP that I perhaps should stop having the pain patches altogether which he agreed.

How did the strontium injection work do you know?

Yes it basically releases radioactivity through your blood stream so that it hits wherever the pain is throughout your body so if you're getting it in more than one place which I was it stops the pain wherever it's occurring. I was told that the length of time that the strontium injection work vary between patients, it can be as little as 3 months and as much as 15 months before you need another one. At the moment it's about coming up to the, getting on to the 3 month stage and it's still working with me, there are no problems, at this stage I'm completely pain free, I'm feeling a lot better than I did.

Does it have any side-effects the strontium injections?

I haven't had any, there can be side-effects with them but I haven't had any so far.

Describes the varying side effects after different treatments such as breast tenderness.

Right, the Zoladex gives you hot flushes, exactly the same as women have when they're going through the change. Again, I didn't have them as bad as some men I've spoken to, some men have them really bad, they were sweating nearly the whole time and found it very, very uncomfortable. Waking up in the night absolutely bathed in sweat and having to get up and sometimes go for a cold shower to cool off. Fortunately mine were never that bad. Mine would last may be 3 or 4 minutes where I just absolutely boil up but you know and then I would just sit still and it would go off and I'd be okay again. But there was never any warning as to when that could happen but I found that triggers were often things like having hot drinks or being in a very warm room, things like that would bring the hot flushes on, that was the only problem that I had with Zoladex. When I started having the Stilboestrol, Stilboestrol stopped the hot flushes (laughs) so that was a benefit of having the Stilboestrol but the Stilboestrol caused breast swelling and breast pain, breast tenderness.

Describes his experience of the vaccine trials.

I then wrote to the [name] Hospital, to the consultant there who was doing the trial, and asked for more information about it. This was about 2 months after the trial had started. The trial was for 60 men to have the prostate cancer vaccine which had been devised. A similar vaccine had already been used on melanoma which had proved to be quite useful so I was encouraged to think well if it's worked on one cancer it may work on another. I got some written information about the trial, discussed it with my two daughters and they said 'Well if you're happy to go on it you know go for it.' I was told that I could come off that trial at any time I wished if I didn't feel it was doing any good I could stop the trial at any time. 

There were certain entry criteria for the trial that I had to fulfil. The main one was that I had to have a PSA of above 30 and rising and that I had to have had two hormone drugs that had ceased to work efficiently which I had. The only problem was that my PSA was just below 30 at that stage and wasn't rising so they said 'Well we can't take you until that happens.' So I had to start having regular monthly PSA tests until such time as my PSA went over 30 and carried on rising which eventually about 3 months later it did. So in July of last year I qualified for the trial and started on the trial. Because it was a trial things changed during it. I was originally told that we would have to go down to London every 4 weeks for the injections. The injections were 2 in the lymph nodes underneath the armpits and 2 in the groin at each side. That was okay, it wasn't too bad, there was just a slight stinging from the vaccine as it went in and then it was okay. Before the trial started I had to have some trial injections to find out if my skin would react to the vaccine at all and that was not the case, it didn't react so I was okay for going ahead with it. So we started work on the 4 weekly injections and I felt quite well, I felt my energy levels were increasing, I didn't feel as tired, I didn't feel as fatigued as I had done and I thought it was doing me good. I tried to get feedback from the consultant as to how they felt it was going but they were quite noncommittal, I think probably because it was a trial they didn't want to say too much about how they thought it was going. The only thing they did say was that they felt that the vast majority of men on the trial were feeling better and they seemed to be producing more cells to fight the cancer so that was encouraging news. And because I felt so well I assumed that I was one of the ones that was producing these cancer fighting cells.

Did they say much about how the vaccine had been developed and what was in it?

It was developed from dead cancer cells from other patients. There was a similar trial being conducted in America where the vaccine had been produced by taking the cells from the patients themselves but that was the difference between the two. I believe there's now a trial going on in Britain which does exactly the same thing as the American one where they take the dead cells from the cancer patients themselves, make the vaccine then re-inject it. There are currently additional trials going on as far as I'm aware, a new one at St George's, another one at Hammersmith Hospital in London. I don't know too much detail about those.

And how long does the trial go on for?

Well the trial, we were told initially that following 12 injections we were going to go down to 12 weekly injections but when it came to my turn to go onto the 12 weekly injections I was told that they'd changed their minds because they'd found that some of the men that had started before me were having adverse reactions to carrying on with the injections following the end of the 12, monthly ones. So they, they decided to change what they'd originally said and finished the vaccines after the 12 injections. So in July of this year I finished the injections. I immediately started having a reoccurrence of bone pain, whether that was because I'd stopped having the injections or whether it was coincidental I don't know.