Interview 09

Age at interview: 57

Age at diagnosis: 54

Brief Outline: Diagnosed with prostate cancer in 1997. Had a prostatectomy in 1997, external beam radiation and short hormone treatment 2000.

Background:

Describes how the problem was discovered after a full check-up and the advice he was given.

We're in a health scheme at work and we get tested every 2 years. We have a full examination and when you get over 50 one of the tests I have is a PSA which indicates if there's anything abnormal with the prostate. About 6 years ago I went and my prostate, my PSA was up slightly, it was up to about 6.7. The doctor indicated that that was normal, it was a little bit high but he wasn't concerned at the time. We just let it go for 2 years. Subsequently the next 2 years that I went for my medical the PSA had gone up to 7.5, which was a slight increase again. The doctor again assured me that was a little bit over the range but no reason to be concerned. So what they advised me to do, because it was still low in their estimation, instead of waiting 

for the next 2 year "Well Man", was to go in 12 months. Which I duly did and it had gone up yet again to 8 point something. So I went on seeing my own doctor and I said "Well look it's gone high now, they're telling me the range is between 0 and 5; it's 8 so it's gone up progressively - slow though it may be there's something amiss". So it was at this stage that he referred me to the hospital, and I went down to the urology and after tests I had another PSA, it was at this stage that they says "Still nothing much to worry about but we'll have to do a biopsy".
 

Describes how positive his wife is.

What was the impact on the whole family at that point?

Well I kept a lot, there was only [his wife] knew and [name] is a very, very positive person because she'd been through it [she had also had an operation for breast cancer], so she was very, very positive and she, you know I didn't, I just carried on work as normal, or people thought I was normal because of my personality but inside I was, I was very upset. 
 

Describes what it was like to have the catheter in at home.

I came home with the catheter that stayed in for - I'm not sure how many weeks it was - it was at least 6 weeks, it could've been 2 months. 

The catheter is like a balloon, they put that down the penis and they inflate it. The balloon is at the end and they inflate that and that stops the catheter coming out. To take it out they put a syringe down and burst the balloon and then just pull it out; and it's just an "Ow!" 

You have one of a night on a stand and you put the bag on the stand, which is nice when you're getting older, you don't have to get up in the night. And then of a daytime, you have one that you strap onto your leg and I used to wear that in the daytime no problems at all. The worst part I had was going to the toilet.

The pain doesn't come from round the penis but from the bowels. It's really difficult and I've got a very high barrier for pain. I came out and my wife was upset because of it. Gradually it got better and better and they gave me that Lactalose to help, which it did, and then I had the District Nurse coming in every day to change my dressings and she was very nice as well.
 

Describes his experiences of the hospital and discomfort afterwards.

I went into, I went into hospital for the operation, of course I was anaesthetised, and I went down to the theatre. They make an incision from the naval down to the bottom of your stomach to operate and they remove the prostate and also they remove the seminal gland which is part of the prostate and I was in the operating theatre for about 5 hours I believe. I woke up in intensive care,I didn't know much about it but I felt fine, I had no problems at all but I had a lot of tubes sticking out of my arms. I had epidurals for the pain, I had a catheter fitted so I had tubes down there. I had quite a few tubes, I was on a drip and I was in intensive care for the night. The nurse - and I shall never forget because I was quite awake - kept calling in every hour to check up on me and I kept smiling at her and then they took me back to the ward the next day.

The first person that came into the ward was the physiotherapist and she said "Right let's be having you out of bed", and at this stage after having major surgery I was frightened to get out of bed. There were tubes everywhere and I was frightened to do any damage to those. Anyway,she said "Come on let's be having you." So I rolled out of bed,and she said, "I want you to sit in that chair," so I sat in the chair and she reassured me "You'll be alright," and went. So I sat in the chair for about 10, 15 minutes, felt a bit shaky, got back into bed and I thought well that's not bad. And then nurse brought me soap and water, I freshened myself up and then I just progressed from there. I must add at this stage I was still on liquids only, nil by mouth, I wasn't allowed to eat and I wasn't allowed to eat for a four days because of the operation.

Food never worried me at all, I was just happy to be where I was happy knowing that I'd had the operation so that's how they explained it to me. There's probably a more technical term but they said the stomach goes to sleep, as soon as you touch it and we get no response out of your stomach for 3 or 4 days.

I had no problems at all with the catheter. I was aware of it - I was aware of them changing the bag every now and again, but there was no discomfort. The biggest discomfort after the operation is going to the toilet, but this was after 3 or 4 days later, after which the bowel or the stomach wakes up. I had a bit of a fright then when I went to the toilet and the nurse explained to me "You shouldn't have tried to go to the toilet, you should have left it". But when you haven't been to the toilet you've just got it in your mind "Well I should have to go now". And she was saying "There's nothing there for you to go", and all I did was I make it worse really because I caused bleeding. I thought "Oh what have I done?" But it was nothing, it was just I should have listened, I shouldn't have gone really.

The strain made me bleed and of course with the catheter there I thought something had happened with the tube and I got a little bit of a panic. But when it was explained to me again I was alright. They told me this catheter was really my lifeline and they had it taped to me and they said "Whatever you do don't pull that out, that is your lifeline because that's replacing the tubes inside your body until such times as they heal up."

I was supposed to have been in hospital for 14 days, that's what they told me, after 7 days I think they were glad to get rid of me. My stomach started rumbling and that was, that went on the nurse's report "I've had a rumble, I've had a rumble, my stomach's waking up," so they started me after the fourth day on food. And it was at this stage, once I went onto solids I just had it into my mind that I should have to go to the toilet. I think I just thought well if I've eaten so

Explains how MUSE worked well against impotence but Viagra did not after a radical prostatectomy.

The main side-effects after the operation to me were the incontinence and I can say I was impotent as well; I didn't get any erections, which I think people should know. But again it was a big operation and there are things that they can do for you, we've tried a couple of things. I hasten to add Viagra didn't help. What works to a certain extent is there's a thing on the market called Muse and that's an injection that you put into the penis. It can be very successful for some people, I would say for me it's 75% successful, so it hasn't ended altogether.