Interview 27
More about me...
Suggests that some drugs and herbal remedies may lower the PSA level in the blood.
Suggests that some drugs and herbal remedies may lower the PSA level in the blood.
What's your understanding of the PSA test?
My understanding of the PSA test that it's, that it's an indicator but it's not foolproof. And I suppose one of, one of the ongoing concerns about the whole thing about prostate cancer is that's its very, very difficult to diagnose prostate cancer other than by physical biopsy. And in fact you know lots of the drugs that you can be given for an enlarged prostate may actually dampen your PSA levels, maybe artificially, so that's sort of an interesting thing that sort of stays in the back of your mind so does, in fact I think you know there's even been the thought that saw palmetto can actually artificially dampen your PSA levels and therefore could mask the fact that you might have cancer. But I think it's quite a contentious issue. I mean I have seen research saying that there are people that have had quite aggressive cancers and have had normal PSA levels until quite well into their, their illness.
His research on the internet revealed that benign enlargement of the prostate is more common than prostate cancer.
His research on the internet revealed that benign enlargement of the prostate is more common than prostate cancer.
Did he, did you have any written information abut the PSA test right at the beginning?
No [laughs] I'm afraid information was, was very short.
Did you come home and search the Internet or anything like that at that stage?
Not at that stage. I mean basically the thing about the PSA test was I think I had about 12, they tested me for 12 different things you know so various blood tests for various things and the PSA was just, was just one of them and it wasn't really any big deal at all. Of course when I, when the results came back at 4.8 and my doctor was concerned, then I did of course get on the Internet and I learned all about enlarged prostates and of course about prostate cancer. But at no stage, one of the things which I'm concerned about is that at no stage other than through my own research on the Internet did I realise that actually having an enlarged prostate is much more common than having prostate cancer. And you know following all the experiences I've had over the last 2 years I was a classic case of having an enlarged prostate. So I went through all the cancer testing and what have you, probably quite properly, but at no stage did anybody want to reassure me particularly about the fact that I probably didn't have prostate cancer. Nobody said I probably did but the way people acted and the way that all the appointments followed each other in a very rapid succession meant that although nobody said they were very concerned I had prostate cancer it was very obvious, it was implicit in how they were acting that I may well have prostate cancer. Obviously with the benefit of hindsight all the signs were that I didn't have prostate cancer but I did just have an enlarged prostate.
He had a PSA test partly because he and his wife were influenced by articles written in the Times newspaper.
He had a PSA test partly because he and his wife were influenced by articles written in the Times newspaper.
Can you just recall all the reasons that you actually decided to have a PSA test?
Yes I can. Basically it was a combination of things, it was a combination of 3 things. I remember going out to dinner with a business associate of mine, several months before I finally went for a PSA test and I remember after dinner as you do you go to the loo and you have a pee. And I remember that I was a long time peeing and this colleague of mine said, 'You don't have a prostate problem do you?' I said, 'No not that I'm aware of.' He said, 'Well if you're having difficulty peeing,' he said 'you ought to go for a PSA test because prostate cancer is absolutely rampant in men these days so you ought to be thinking about having a PSA test.' I said, 'Right that's very interesting.' so that was the first thing that happened but
Had you heard of a PSA test?
Yes I had, yes I had. I'm married to someone who is concerned about me and concerned about my health and she'd actually mentioned slightly more casually the PSA test. But I have to say subsequent to that that she had been nagging me for a while after that and before I actually went for the PSA test that I should actually have a test. I think there was another incident as well, some friends of ours, one of their friends the husband had been diagnosed with prostate cancer and it was quite an aggressive cancer and he was in some very extreme difficulty, so I was coming under a bit of pressure from, from a friend, from, from my best friend, my wife, but then I also, as I said before, needed to go and have a general check-up just sort of age and stage and what have you.
I was being influenced to have a PSA test by one of my friends and what have you but only very mildly and as it happened probably several months, may be a year before I actually went for a PSA test. But I was coming under increasing pressure from my wife, and I think probably this is for two reasons, one is of course she cares for me very much and doesn't want to lose me and therefore she knows that prostate cancer is, is a big killer for men, particularly my sort of age and upwards so that was one reason. But of course this feeling of concern she had was exacerbated I'm sure quite substantially by you know articles in the press, you've got you know various people in various you know media, Stuttaford in The Times and so on, going on and on and on about the fact that too many people are dying of prostate cancer unnecessarily, you must go and have a PSA test. So basically you know the pressure was growing and growing and growing and so I finished up going for a general medical with my GP but mentioning as well that I ought to be having a PSA test.
His consultant wanted to do a biopsy almost immediately.
His consultant wanted to do a biopsy almost immediately.
Obviously I wanted to talk to him about what this might mean to me, what the various treatments might mean, whether or not this would have any side-effects or what have you. So he talked about treatments but basically focused on TURP which is his specialty and he talked, talked about it as being the Gold Standard. And I said we've been together for a long time, we had a very good intimate relationship and I was a bit concerned about the side-effects in terms of my sexuality and so on. It was quite shocking really because within sort of you know 5, 10 minutes of having this discussion, obviously he'd done the examinations and what have you but when my wife and I were together with him within 5 or 10 minutes he was saying, 'Well I just want you to know, you know you cannot have sex from a coffin.' And when he didn't get the sort of reaction probably he was expecting he then said, 'Especially if the lid is screwed down.' which I thought was quite a tricky thing to say to somebody when he'd first met them.
So anyway this was a Friday and he said, 'Well you'd better come in on Monday for biopsies.' So I was thinking hell am I going to die or something, you know it's Friday, the next possible day I could come in for biopsies was the Monday. So he booked me in for biopsies on the Monday and to come back to him for the results on the following Friday.
He wanted to discuss how treatment might affect quality of life before agreeing to have a biopsy.
He wanted to discuss how treatment might affect quality of life before agreeing to have a biopsy.
You said something just then about quality of life, would you mind just summarising that?
Well I'm very fortunate I do not have cancer but of course during this whole process what concerned me greatly was my quality of life. I've been married for 35, 36 years, I have a wonderful relationship, it's a full relationship which includes all the physical love aspects of a relationship, and it's very important to me, it's very important to my quality of life. In discussing this with the consultant I'm afraid we just couldn't go there because he was talking about cancer and he was talking about the possibility of dying from cancer, and I was talking about my quality of life, not the quality of my death. And this whole issue of, well as a consultant who is dealing with cancer of the prostate he's just seen so many people die of cancer of the prostate he is worried about saving lives. And my concern was of course in saving my life but in saving my life including my quality of life, and the constant discussion about TURP which is basically an apple corer and you stick an apple corer in, you core out what's in there, all your nerve endings, everything else, so that if you're lucky enough actually not to become impotent then what happens is you'll have retrograde ejaculate if you ejaculate at all. And basically the whole thing, if you have to go through it you have to go through it but if you can avoid going through that, for me anyway I would attempt to avoid going through that. So if it got to the, to the wire and I found that I did have cancer I have to say I would not have gone for treatment locally.
He developed a bad urinary infection (cystitis) after the first biopsy, during which ten samples of tissue were taken.
He developed a bad urinary infection (cystitis) after the first biopsy, during which ten samples of tissue were taken.
I went for the biopsy, I had ten biopsies and basically what happens is they will give you a local anaesthetic, but it's all, obviously they access your prostate through your back passage so you actually have a local anaesthetic injected up through there. They then put this bit of kit up inside you which grabs bits of your flesh, whatever. And I didn't find it that unpleasant, I mean it certainly wasn't pleasant, the whole thing is quite undignified and quite difficult but it wasn't that unpleasant although obviously I did react to it because when I got home I was sort of pale and looked as if I'd been through a bit of an experience. But it was fine and later in the day I was fine and went back to work and what have you.
But at the time of having the, the biopsies the consultant said to me, 'By the way,' he said, 'Obviously we're going into your prostate and we're taking samples from your prostate, it is going to have an impact on your insides and you may find that there's a little blood in your urine over the next little while.' And I said,' Well what do you call a little while?' And he said, 'Well may be a month, 6 weeks or so.' And then that was that so off I went home and all the rest of it.
Went along for the results on the Friday and he explained that 9 of the biopsies were clear but one of them had very suspicious cells and the, the operative who was looking after this kit was saying, 'We must do some more biopsies around that area.' So he gave me a little rest and the following Monday, that is a fortnight after the first biopsies, I had another 12 biopsies. That obviously was quite difficult, and I know that, for instance in America, my brother-in-law is a surgeon in America, they would never give you 22 biopsies in your prostate in a matter of 2 weeks. But anyway I had, I had 12 biopsies done and went back for the results a few days later and he pronounced that they were clear. But by that time I was suffering from extremely bad cystitis which is an infection I'd got probably from the first biopsies. It took a little while for that to be sorted, in fact they thought that they might have to take me into hospital and put me on a drip because the cystitis was so very, very bad.
He suffered elements of 'post traumatic stress' for several weeks after he passed blood in his sperm.
He suffered elements of 'post traumatic stress' for several weeks after he passed blood in his sperm.
But actually what I want to say about the biopsies is something which was very, very much more important to me and that was this, this remark about you may have some blood in your urine. Probably the most traumatic thing about the whole experience for me in terms of the PSA testing and the biopsies and visiting the consultant and all the discussions, quite apart from the difficulty with the, 'Having sex in a coffin' comment was the fact that I was not prepared for the effect of the biopsies on my sex life. And what I mean by that was the consultant said, 'You may find that you pass a little bit of blood in your urine.' In fact it isn't blood in your urine which is the most significant thing it is the fact that when you have a sexual experience and you ejaculate it is a bit like the film 'The Alien' if you're not expecting it. What happens is that you ejaculate what looks like very florescent strawberry jam. And I actually, according to my wife, was traumatised by this and subsequently suffered elements of post traumatic stress for several weeks.
And it was very, very difficult and it was very, very difficult because, mainly because I wasn't prepared for it. If I'd been prepared for it I could have dealt with it, I would've expected it and I could've dealt with it but it mean that we didn't have full sex for about 6, 8 weeks, it meant that I was wearing a condom which I hadn't worn since I was in my early twenties and basically I had a very, very difficult time which was quite shocking for me because I'm a very forthright confident person in my life, I'm a very, or always had been very confident in terms of my sexuality and I had some difficulty with that for some weeks and months after that and the whole thing seems rather bizarre to me because basically I went for a PSA because of my symptoms which were to do with restriction of urine flow.