Richard Z

Age at interview: 53

Age at diagnosis: 47

Brief Outline:

After suffering several symptoms of problematic urination Richard spoke to his GP who suggested a PSA test. On the results of this he had a biopsy which led to a diagnosis of prostate cancer in March 2005. He had a prostatectomy in July 2005.

Background:

Richard is a telecoms engineer, married with one child. Ethnic background is African-Caribbean.

More about me...

Richard was diagnosed aged 47 with prostate cancer in 2005 after seeing his GP about problematic urination which he had been experiencing for a couple of months and which he thought may be a urine infection– difficulty in urinating, getting up several times in the night and bursting to go and then not being able to go properly. His GP gave him a digital rectal examination and sent him for a PSA test the results of which suggested there may be a problem with his prostate and he was referred to the hospital for a biopsy. He found the biopsy to be unpleasant but realised it was necessary. Richard knew very little about the prostate or prostate cancer and there was no history of it in his family. He was shocked at his diagnosis as he doesn’t drink or smoke and keeps fit. After being given the treatment options by his consultant he asked his consultant what he would do under the same circumstances as he trusted his advice as an urologist. He made the decision to have his prostate removed immediately although he later took time to understand what the side effects were and discussed these with his wife who was anxious that he got the treatment quickly, got rid of the cancer and begin the recovery process. Richard had the operation in July 2005 which he describes as straightforward. While his recovery was problematic and lengthy with a lot of incontinence and erectile dysfunction all his functions returned to normal after two years. He now has an annual PSA check and this has been zero since his operation and is content that he made the right decision regarding his treatment.

 

Interview conducted in 2011 by Anne Montgomery.

Richard describes his symptoms. He had to get up several times during the night to pass urine. He was bursting to go but then found it difficult.

I was diagnosed with prostate cancer in 2005. I had all the symptoms of somebody who’s suffering from prostate cancer, difficult to pee, getting up several times during the night, bursting to go and then not able to go properly, and this lasted, you know quite a few weeks stroke months, went to see my GP, who sent me for a blood test to test my PSA level, I didn’t know what that was at the time. So I got the results of that test, he suggested that there may be a problem with my prostate, I was sent to the hospital for them to do a biopsy. They did a biopsy, which, a very unpleasant procedure but necessary, and then got the results of that confirming that I had prostate cancer, and then was given the options by the consultant. After discussing it with my wife, decided the best thing to do was have the prostate removed which I did in July 2005. The operation itself was pretty straightforward, but the recovery was very difficult. There’s a lot of side effects, a lot of incontinence, erectile dysfunction, and it’s quite a long recovery period, so that was very difficult, much more so than the operation itself, but in the years after that it’s just got a lot better and everything’s sort of, all my functions returned to normal, including the erectile dysfunction problem after two years, and since then I’ve been fine, I have an annual check, and my PSA level is zero, which it should be, and I’ve been fine ever since.

 

 

 

Richard's surgery seemed to go well though he was in the operating theatre for six hours. He describes his immediate post-operative recovery.

Well the operation, it was a very long operation, I think, I was told by my consultant that it would be, maybe two to three hours, but as it turned out it was a much longer operation than, I think it was maybe about five or six hours, but obviously I wasn’t (brief laugh) I wasn’t conscious for the operation so I don’t know if there was any complications, but I know from my wife, I mean she was waiting for me when I came out, she was waiting a long time, and obviously thought something might have gone wrong, but yeah, the operation seemed pretty straight forward, and yeah, it was a little bit of discomfort, not really a lot of pain, so I think that was the easy part of the treatment, was the operation, yeah you don’t think it at the time because you haven’t experienced the recovery, but to me, that was the easiest part, I think the recovery period and things you have to go through after that, was much more difficult.

 

So, the immediate recovery, what was it like then?

 

The immediate recovery, because you have a catheter, you’ve got a catheter to pass urine, so you have to, you’ve got this bag strapped to your leg all the time, and then when you’re released from the hospital you’ve still got that, and you have to change the bag and keep it clean, you’re not able to lie down and sleep initially because the cut is a, sort of, where your abdominal muscles are, so you’re not able to lie down flat, so for the first, maybe three, three weeks or so, I was having to sleep in the front room sitting up, because you just can’t lie down, so that was uncomfortable, having to keep changing the bag, that was uncomfortable, just having the catheter in, full stop, was uncomfortable, showering with it, very uncomfortable, and then you have to go back and they do a test to see if they’re able to remove it, if the surgery with your bladder, if that had been healed, and then they’ll remove the catheter. Once it was removed, then you have to learn to sort of pass water yourself, which you don’t, you don’t even think about, so you have to do that and there’s a lot of leakage, a lot of incontinence, so you have to wear a pad, which again, very uncomfortable for a guy, you can’t travel long distances because sometimes, you don’t even realise, you know, the pad is getting wet, because you don’t realise that you’re leaking, because you can go to, you’ll got to the toilet and you finish, and then you’ll be sitting down and you don’t realise you’re still leaking, so you have to do like pelvic floor exercises like pregnant women do, to get control of your bladder back, so that was very uncomfortable and that must have taken about two to three weeks to get control of my bladder back so that I could pass urine and then stop passing urine and for it to, no leakage, and not wear pads anymore, so that was a very hard part of the process, and then after that, I think the erectile dysfunction was the, yeah, was the biggest problem, after that.

 

 

 

Richard tried Viagra, Cialis and other treatments for erectile dysfunction. He was relieved to find that after two years he had an erection without any medicines or injections. Now he is fine.

I went back to my consultant and then they try you on Viagra, Cialis, injections, there’s a whole host of things that you can try to get your erection back, because the reason you don’t have an erection, because there’s nerve damage when they remove your prostate that can’t be avoided, they just try and minimise the nerve damage, but there will be nerve damage, and you will lose the function for a period of time but the nerves apparently, they heal very, very slowly, nerves heal very slowly, and he, sort of tried to reassure me that you know, I’d probably get the erection back after maybe four years, you know, I was thinking, four years, I mean, that’s like a lifetime, so in the meantime you can try different things, and yeah, that was very difficult, and very difficult for my wife, yeah, but because she’s so supportive and so caring it was less difficult than it might be.

 

So you’ve no side effects now?

 

Not now, no, no, no. Two years after the operation was the first time I actually got an erection without any medication or injections or anything like that and it’s been fine since, but I think I’m one of the, a very small minority who have got you know, any function, much less full function back, but you don’t realise that, because when they say, “oh yeah it should be back in four years”, when you research it you realise that the majority of guys haven’t got it back at all, and some might have you know, maybe forty per cent back, if that, so I don’t think they tell you much about that in the beginning which I think is wrong.

 

So it is very unusual then for, to be in the position that you’re in?

 

Very unusual, yeah, very unusual.

 

And do you tell men that, when you’re speaking to other men?

 

Yeah definitely I do, yeah I do tell them about it, yeah, yeah because they’re not even aware of that side effect, and when they are told you can see their faces drop, but yeah it’s, yeah I’m just one of the fortunate ones I think.

 

 

During the time Richard had erectile dysfunction he found help via chat lines which he found on the website run by The Prostate Cancer Charity

You got your diagnosis, and you were looking on the internet, what sources of information on the internet did you, get?

 

Mainly I was looking at the recovery from prostate cancer, especially when you’ve had your prostate removed, because I know there are side effects, but obviously for everybody the recovery’s totally different, you know, some guys you know, never recover, they don’t recover from erectile dysfunction, some get it back, some get it back, you know, just a proportion of it back, some never ever get it back, also I went on websites where you’ve got chat lines with guys who have had prostate cancer, and it was quite interesting to you know, to read those, some of the comments and be involved in some of the comments, and people gave me suggestions back and forth, what you could try, and yeah it’s quite sad, you know, some of the guys, you know, married, and it’s been like ten years and they haven’t been able to have you know, have sex with their partners because of the erectile dysfunction, so they were quite open on this chat line and I found that quite moving really, but very helpful.

 

Are you still involved in those chat lines?

 

Not in the chat line no, I’m not now, no.

 

So when did you stop being involved, in that?

 

I think once my erectile dysfunction disappeared, which was like two years after the operation, I think I stopped going on the chat line after that, but still you know, involved with talking to people about it, you know, but yeah, I didn’t go on the chat line anymore.

 

And have you been involved in any other support groups?

 

No, just the Prostate Cancer Charity, that’s the only one.

 

 

 

Richard thought that he obtained better information from the Internet than from the pamphlets he was given to read.

So do you feel that you got enough information?

 

Yeah, I think I got enough information between the pamphlets and the internet, I got more, more comprehensive information and I think when you go on the internet you find out realistically what the operation’s all about and the side effects and you know, how long the side effects last, more so than in the pamphlets I think, the pamphlets sort of give you a false impression that yeah, you know, after a few years you’ll be fine, and you know, the majority of guys are not fine after that.

 

So, did you get any other information from any other source?

 

No.