Interview 15

Age at interview: 65

Age at diagnosis: 63

Brief Outline:

Diagnosed with prostate cancer in 1998. TURP in 1997, external beam radiation.

Considers the relationship between regular exercise, testosterone levels and prostate cancer.

Well my thought is, is testosterone, the exercise and the things perhaps that guys do generating testosterone, could be that be the reason that the tumour develops at the rate of which the tumour develops because if it's testosterone fed and you're producing more than average testosterone is that the case? I don't know, that one has only recently come to mind and it was only because I read an article on the production of testosterone and the things that can produce it and it would seem that athletes, I'm not an athlete but I like to run, people who swim regularly, people who ride bikes that sort of activity produces what's seen to be a healthy body and a very healthy supply of testosterone.
 

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

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.
 

Explains the process taken with an ultrasound scan.

Ultrasound, well the image of the bladder is taken using ultrasounds and the reflection from ultrasounds, rather like the asdic system that was used for submarines many years ago. The picture can be formed by sound echoes I understand. I've no technicality of it but I understand that's the principle. So rather than use X-rays or whatever a picture can be formed with the ultrasound showing the shape, the size of the bladder.

So they just move something over your stomach?

A jelly over the stomach to make better contact, I believe, with the skin so there are no sort of air pockets between the device and the skin and with that the ultrasound penetrates. The reflections are picked up and the image can be formed I think just like pregnant women have the scans to show their unborn child, I think it's the same sort of thing. As I say I know nothing about the technicality but that I believe is the method used. So a picture was formed and afterwards one empties the bladder and has the scan again so I think the bladder size empty and full can be ascertained and I think that's a significant factor yet again in the sort of search for the problem. So I don't think that turned up with anything in particular that was concerning, so then thought well perhaps it's a prostate problem.
 

Comments that some people are still very negative but support from others can be brilliant.

You sometimes find there is a strange attitude in that direction and again you find that some people say 'How are you?' you know, wondering how your cancer is, and it's almost you know 'You do look well,' and it's almost the sort of big surprise as to 'Oh you're still with us,' you know (laughs), you look at it and you think oh dear there's a bit of an attitude problem here. So you get mixed reactions from people, brilliant reaction from my fellow jazz enthusiast who gave me so much support and said 'Well look my treatment was this and I'm 15 years on now,' that was brilliant news. And I've found one or two other people since, because I will talk about it, and you find then other people have been through the same thing. And their support is brilliant.
 

Describes his initial shock but now how he focuses on the positive.

I've read quite recently that it is one of the most significant killers of men, outside lung cancer. And he was very good, he said 'Sit down,' and he explained that because I had come to him at this stage and my tumour was not too far advanced there was a very good chance of cure. If, well he was saying also the majority of men that he sees with prostate cancer are too far gone to be treated the treatment is only palliative so you know I was there with a pretty good chance of survival which is very encouraging of course. But still it's a devastating shock you know okay we're all mortal and we realise that the end will come at some stage. And I suppose as you get older you become more philosophical because your children have grown up, you look to the fulfilment of your life rather than the sort of negative side and you say well we've done well you know we, I feel I have a wonderful wife, a lovely family- I'm very fulfilled. So I had the feeling well you know death is something that we've all got to face you know there is nothing unique about dying in fact it's quite the reverse. But by the same token it is still a shock when you think it's round the corner. 
 

Expresses his concern that support groups may quell optimism.

Have you been in touch with a support group?

No, no I'm not very much a support group person I suppose really. I find in that direction I would much rather do my own research and find out for myself than go along to a group of people all with the same complaint. One of the worst things there if you go to a support group like that and you hear that Bill died last week and Mary has died subsequently it doesn't really do your optimism a lot of good does it?

Expresses his frustration with the worry caused by delay in the waiting room.

The delays to see the consultant bothered me, I suppose also the delays in the waiting room bothered me, particularly when you're going for the results of a biopsy and you're there biting fingernails. Because we all feel this you know the word cancer scares the life out of us and you're waiting there for a half past 9 appointment and you see the specialist at quarter to 11 and I've seen them as late as 12 o clock. And all that time you're a bit frustrated with the long delay and you are sort of beginning to worry and worry and worry, well I say you, I'm speaking for my own self because some of us worry more than others. I feel quite anxious those times, what happens I do not know.

It must be awful.

Yes it bothers you because you almost regard this man as God who's going to pronounce a life or death sentence on you when you don't know. So to wait a long time for that sort of pronouncement does get you up a little bit tight. But the frustration as I say of waiting and the worry of what the guy is going to say to you when you go in.

Explains that the operation is very technical and precise.

The actual radiotherapy you just lay down, the beam is focussed and they're very precise, they mark you up with an infrared beam as it were, I'm not sure that it's infrared but at least it's a red beam, if it's infrared it would be producing heat. But they mark you up with the beam, they set you in exactly the position, they keep you very still for a period of about 2 minutes and then the radiation takes place in 3 positions. The 3 positions for the prostate to the left hand side, exactly over the middle, just up above the penis, about 3 inches up above the penis and to the right hand side. So it's quite a precise art as it were. The duration is for about 2 minutes and the only thing you do is lay there rather bored and I count the clicks. They explained that the clicks were not seconds because I try and time it but it's just clicking to say that the radiation is on. You're not completely sure whether you should be there because everybody goes outside the room, so you think what is this thing that they want to avoid that I'm having. So they go outside and they monitor you from the outside. But that, once they've set you up then the machine is automatic, it would do its 3 positions automatically, I assume automatically, I don't think they're operating it from outside. So that is a very, very precise, very technical operation that is I think particularly good.

Comments on the symptoms he developed after external beam radiation.

At this stage I'm beginning to develop one or two symptoms and the main symptom is that the back passage is bleeding which I understand is quite a normal thing, and passing motions becomes very sore and quite unpleasant and I would imagine perhaps like someone has got very bad piles and the bleeding associated with the piles was very much the experience that I was having. It was important at that stage to keep myself particularly loose because otherwise it was excruciating if I didn't eat lots of fruit, roughage things like that, to make sure that I could pass motions easily. That was one aspect of it. 
 

Explains how a transurethral resection led to some change in his sex life.

After the operation, well yes it was explained that ejaculation wouldn't be the same as it had been previously. It wasn't, that was, that was extraordinary so the sexual life changed, not disastrously or anything like that but the way in which one behaves in that situation had changed in as much as there was not a complete or proper ejaculation. Instead there were a number of mini ejaculations so the whole thing of sex had changed in that direction. I would say a little of the pleasure of sex had disappeared, but that was the only side-effect. The great bonus I suppose was peeing and on the first occasion when suddenly after what obviously had been a long time the stream had been getting smaller and smaller there was a mountain stream gushing so it was quite incredible the change as far as that was concerned.
 

Discusses how radiotherapy affected his energy levels.

The other aspect, I like to run and I've been running for about 50 years I suppose, even longer now 55. In the first place I was able to run very regularly. I was very fit before starting the treatment and I was able to run all the way through the treatment, but I found towards the end that I was becoming very tired. I found tiredness coming in and a little bit of ennui, lethargy, I was beginning to be not be as on the ball perhaps as I would normally be. Well enough to drive, well enough to do all sorts of things you know it wasn't major or anything like that but I was beginning to find running a little bit more difficult. And in fact I cut my mileage down towards the, I suppose the last 5 or 6 weeks of treatment, sorry the last 3 or 4 weeks of treatment I had to cut training down. After treatment I was still left with the problem.

Having had a word with the GP about it, how long would you expect the tiredness and the physical change to take place after radiotherapy and he said 'Well 3 to 6 months' but its taken me a lot longer to get back. But then also I suppose I'm now 66 and there's an aging process too so it might not be due completely to the treatment. But the fact I had to cut down at that stage, it's taken may be longer to get back into form, due partly to age, not necessarily due to the treatment. But having said that all normal things, after 3, 6 months I was fairly well okay again to do most things.