Interview 32

Age at interview: 70

Age at diagnosis: 67

Brief Outline: Diagnosed with prostate cancer 1997, prostatectomy in 1997, external beam radiation in 1998.

Background:

Assures that the scan is totally painless but some could find it claustrophobic.

Can you describe the scan you mentioned, was it a CT?

There were 2 scans actually, there was a CT scan and an MRI scan. The CT scan involved an injection into the arm, a normal injection. I had to wait for 3 hours and during that time I was free to go outside and walk around the city, do anything I wanted and then report back again. I was then asked to lie on a table and without any movement on my part the scanning camera scanned my body from head to toe. I don't know what they were looking for but again I can assure anybody it was totally painless. The MRI scan was the scan which I assume was scanning the softer tissues of the body and it involved lying on a table and the table was moveable in that you were put into a tube. Now it would appear that some people could be claustrophobic in that situation but you simply say to the operator 'Do you mind if I put my head at the open end,' and they agree with that very, very quickly, no problem. It takes 20 minutes and they will play your own CD, again no pain at all. The end result in my particular case was that the consultant said that they were going to give me radiotherapy.

Stresses how important it is to get support from the GP and family.

I think if a man has any doubt at all he should go and see the GP, that's his first point of contact. He can't diagnose himself, he can't feel any lumps so it's got to be via the GP. There is absolutely nothing to fear in terms of pain, even if it's a radical prostatectomy and the people who I've spoken to they all say the same thing. You've got some discomfort, you have after any operation, any surgical operation so there's nothing to fear, go and see the GP. In terms of life, if impotency is something that concerns you again I would say it doesn't come into the equation as far as living is concerned there are other things to do, other things that you can enjoy, go out for meals, play sport, see your grandchildren growing up, all these things are just as valuable. The, the one thing you will need is support from your partner, that is essential. I think looking around the support group I see evidence that couples tend to become closer together when they're confronted with a disease like this, but again unfortunately there's evidence that some female partners can't cope with the situation, again it's probably a natural reaction. So I don't know what other advice to give. Certainly I personally cope by keeping myself occupied but I'm fortunate in that that's always been my nature. I find it very difficult to sit, in fact you've been very lucky to get me to sit here for an hour (laughs), I tend to be up and moving around and doing something. 

Explains how encouraged he is by meeting those who have had cancer for a number of years.

The other good thing about the support group is, and this heartened me, when you're first told you think well how long have I got to go and what effect is it going to have on my life, I've still got things I want to do. So it's quite heartening to meet people who have had it for 10 and 12 years, that is something that gives you encouragement and there are new treatments coming out which we discuss at the support group. We're going to start a newsletter shortly but any medical information we give will be vetted by our liaison consultant first, we would not dare put out any medical information without having it vetted first.

Comments that his only inconvenience was radiotherapy required so much time.

The process of radiotherapy... the only inconvenient part of the radiotherapy treatment is you've just got to cut out 6' weeks of your calendar because you've got to report to the hospital Monday to Friday for 6 weeks and then for some reason or other another 3 days, so it ties you in terms of what you can do. But as far as the hospital was concerned you get an appointment, you get a time and I found that you were always taken within 10 to 15 minutes of your time. You went in for the radiotherapy, you were out and that was it, so the actual time spent in the treatment room was probably 20 minutes to half an hour at the most.
 

Describes the treatment and considers it is not invasive or painful.

The treatment itself again no pain, not invasive, you lie on a machine, previous to that I should say that in one of the scans, if they recommend radiotherapy you have a scan and obviously the scan highlights the parts that they want to treat with the radiotherapy and to give them an index point they give you 2, 3 pin pricks which are tattoos. They're there for life, small green dots, on one each side and one just below the prostate area on the tummy and when you go in for radiotherapy there are two red indexing beams which focus in on the tattoo points so they know that's the reference points, it's locked. The radiotherapy machine has been pre-programmed by a computer to focus in exactly on the spots that they want to treat and I have found out subsequently that not just the area that they want to treat to be on the safe side they have a peripheral zone beyond that which they treat as well.

Explains that after much debate his doctor agreed to a prostatectomy.

Well he [the doctor] explained that the the modern approach I should imagine, was radiotherapy because at one time it had been radical prostatectomy and in America it is currently still radical prostatectomy. At that time I didn't know anything about hormonal treatment, I only understood the two, it was either surgery or it was radiotherapy. Now my immediate reaction was, 'No I don't want radiotherapy, I want it out,' that was my gut instinct, to get rid of the source because I suspected that radiotherapy really wasn't going to get rid of the source. And after two consultations during which we had long debates the consultant said eventually 'Right I'll give you a cystoscopy which involved putting a telescope and a camera up the centre of the penis into the bladder,' and when I came to - this was done through day surgery, again there was no discomfort at all, nothing, it was an hour, I was in and out and that was it. He said 'Right I cannot see anything that would prevent you from doing surgery,' so eventually he decided that surgery would be the option I would have. I still didn't know anything at that stage about hormones.

And did he give you the option of doing nothing?

No, the watch and wait was mentioned but it certainly wasn't an option that I wanted to have, I wanted the prostate gland out.

Comments that he found the operation straight forward but had some discomfort afterwards.

As far as the operation itself was concerned I was in hospital 6 days. It was pretty straight forward, I obviously had some discomfort. If I had been in severe pain then they gave you a morphine facility which is self regulated in so far as if you feel that you're in too much pain then you press a button and you get a small injection automatically, a small injection of morphine, obviously it is controlled so that you can't give yourself an overdose. Er but the other awkward thing I think initially was the catheter which is really a device to keep draining your bladder until your prostate recovers, till the area round where the surgery has taken place begins to recover. You get used to that within a day, especially if you're in a ward where there are only prostate cancer patients, they're all walking around with catheters, it's just the norm, there are quite a few jokes about which I probably won't repeat on this (laughs). 

Comments on an idea he had to avoid some of the embarrassing problems with incontinence.

The other problem that we have, not every man, but a lot of prostate cancer patients, particularly those are incontinent, if you go on a journey you've got to plan it via toilets, the comfort stops. This is something I brought up with the SAPCA (Scottish Association of Prostate Cancer Support Groups) recently. We're currently looking at the possibility of cards, that you can carry, like a donor card that if you really are caught out you can go into a shop, ask if you can use their toilet because it's quite embarrassing, it's embarrassing may be for other people. I don't know, but there is a need for something like that. They're small things but they're things that do irritate prostate cancer patients, that there's no provision there to help them in these particular aspects.