And then when I saw the consultant for the first time they gave me lots of written material, on alternative treatments, a booklet from Macmillan I think, and one from prostate cancer charity, so I had that, I had a lot to take away, and they, they covered, at that stage they covered all the possible treatments- so they had watchful waiting, a leaflet on watchful waiting as well, which in the end they didn’t think was appropriate for me, and brachytherapy and radiotherapy and, having the prostate removed as well, so I had that stuff given to me at that point, which was all very useful, but when it came to me considering what treatment I wanted, I had to sort of digest that into my own form to be able to sort of help make the decision.

I got a folder, and I made, and I made three sheets in it for each of the treatments that I was going to consider, and, so I read through what was there and I summarised on the sheet myself, and then underneath I wrote down what was most important for me, coming out of it, so you know, you looked at what the side effects might be, there were suggestions that, you know, in terms of, how long you live, that the prostatectomy, taking the prostate out, was the better option, and you were likely to have, you know, longer survival, if that’s the option that you chose, but to me, quality of life was as important if not more so, in my decision making, than the idea of sort of living to ninety or something, and the, the surgeon who was the first consultant I saw who I liked very much, he also showed me a website, which was a sort of, a sort of decision support thing, which was from an American university, where you could put in your Gleason score and your PSA and it would actually give you information as to what the likely outcomes were for the different treatments that that there might be, and in fact, and, and he thought that that clearly indicated surgery was the best option for me, and I was very happy to look at that because I wanted to take on as much information as I could, but it seemed to me that the differences were actually quite minor you know sort of cancer free survival at five years or at ten years there were, there were maybe five percentage points or something, but it was still, you know, the brachytherapy it was never lower than sort of seventy five or eighty per cent, which to me sounded like quite good odds so, but it was quality of life aspects to me that were most important in making the decision.

And those were?

Sexual health, lack of urinary problems, bowel problems you had to sort of balance these things up cos theyre all subtly different between the… between the different treatments.

When I was making up my mind about which treatment to go for, I actually looked at some qualitative research, sorry because I work as a librarian, you know, I know how to track this stuff down, and I was interested to read peoples experiences, so you had that on some websites, and also you had people who’d carried out research and actually in those papers you can read what people have said verbatim, you know, in their own words, and that was very powerful and quite sort of influential for me.

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.

I wasn’t given an option, I’ll be honest with you I wasn’t given an option, they simply said that the TURP operation was necessary, ‘When we do the TURP operation we will, well have a look at what we take away and have it analysed, that being the biopsy. Yes it’s cancerous. Yes it’s aggressive and you will need radiotherapy. I wasn’t given any options, I wasn’t given the operation where they can actually… what do they call it?

Prostatectomy?

Yes – reconstruct the whole prostate

Remove the whole prostate?

That’s right, this apparently is alright in younger men but as you get older its apparently not as effective. The big problem is it can leave you incontinent, not that I was given that option, but it’s not very nice to be left incontinent.

In retrospect would you have liked to have been given the option of doing nothing?

No I don’t think I could’ve handled it. It’s a bit like well I’ve got to get rid of it, no I don’t think I would, because you’d be walking, you’d be walking around thinking well it’s still there. In fact you still do now but not to that extent because you feel somebody has done something for you, well you know somebody has done something for you but no I don’t think I could’ve lived with that.

So then he said, You’ve got 3 options. You can have, we can monitor the prostate, you can have radio therapy on the prostate or you can it have it removed,’ and he said,’the decision’s yours. And I had no help whatsoever in deciding or advice what was the best for me which obviously being a lay man I was a bit concerned and he wanted to know by the Monday what the decision I was going to make.

The surgeon gave me pamphlets on prostate but he, and we did discuss it but he did not give me advice on which course to take, he just told me that I, that I can go, it was my choice and the reason why they were doing this is because it was a survey over a 10 year period and people would take different courses and then they would know eventually after 10 years, well putting it mildly, which ones have survived.

But I had no specific advice for myself.

And how much information and time was given to you at that stage, in that consultation?

The information given to me then certainly indicated the seriousness of the event in as much cancer was the word mentioned, the options then described to me were the fact that the radical prostectomy which is an operation of removing the prostate was foremost really. They were alternatives such as therapies of either chemo or radiotherapy and also the fact that they were conducting some tests with various drug companies that it may be an option. But the main thing I think was, that was directed to me, that because of my age and the hopefulness of an early diagnosis the recommendation and I do say this, a recommendation was that I should go for the radical prostectomy and have the prostate removed.

Were all the side effects spelt out to you at that stage?

No, no the side effects, perhaps I’m to blame may be as much as anyone for that because I didn’t challenge that, in any event. And I think it was hard enough at that particular stage to absorb the news that you’ve been given and the possibility of major surgery. It was indicated I must admit that if I had the operation it was major surgery but the alternatives I would have said you know were, certainly not in the foreground but in the background. I’d been told about them, but I was being, I would have said directed to take the radical prostatectomy because of the reasons early diagnosis and the hopefulness of a complete cure.

An appointment was made, but the appointment was a month later, well not a month later, but 17 days after the MRI, which seemed to me to be excessive so because of this pressing a slot appeared earlier and the urologist was able to see me earlier and action was prescribed, this hormone treatment and radio therapy. We looked at various options and these are the two that were stressed.

The urologist I must say seemed peeved at my attempt to accelerate things and it did seem to me that we were following a very standard, I’m familiar with text books having spent my time in a book shop looking at them, we seemed to be following a very text book approach, repeating much of what I’d already read. And it was strongly biomedical approach as you would expect, I had had been struck again and again by the fact that our specialists seemed to be a very, very strong on the physical side of what they’re dealing with and fine that’s excellent but there is no mention of anything psychological, no mention of any alternative medicine, no mention of any other ways of treating it, no mention of anything you might be doing yourself to help which was a little surprising.

And not only that but when you mention it yourself ‘Well perhaps you know if diet shifted,’ because I’ve already met people who’ve worked on diet and seemed to have done very well from it, that might be a useful supplementary approach, ‘No evidence to suggest that, there has been no evidence,’ that keeps coming up, it’s almost like a refrain and has happened continuously since then with specialists. This time he did not seem too comfortable with the questions I was asking, I was very ready for it and wanted to know specifics.

Were you given any information at that stage?

I was given absolutely no information whatsoever, advanced prostate cancer is what I was told, and I just went away and that’s all I knew. Because as I say, I worked for a group of doctors, I immediately, once I’d come to terms with the idea that I’d got a disease like that, I wanted to know what it was all about. Like the vast majority of men I really had no idea where my prostate gland was, what its function was, anything about it so I immediately rang Cancerbackup, asked them to send me all the information they had about it, also contacted the Prostate Cancer Charity and asked them for all the information they had about it. I spoke to people at both places, asked them the basics of what it was all about, started looking for books on the subject and generally educating myself as to what it was all about. That probably took about 2 or 3 months, at the end of which I was far more informed than I had been and started to think well may be it’s not as bad as I thought it was. I only wish somebody would have sat down with me initially and gone through all that with me.

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.

Yes I’ve had advice from two members of the family. I’ve had advice from two consultant urologists. I haven’t had any advice at all from my GP, in fact my GP, the one that I’m actually registered with is quite often off sick and whenever I go to the GP I tend to see a different doctor each time. So I haven’t actually relied on my GP at all for advice other than referrals. But what I have done is to go onto the Internet and I’ve registered with one of the information services that exists on the Internet. I think it’s an American network, and I actually receive each week a list of abstracts of the latest publications on anything to do with urology. In actual fact I would say that 50% of the items on this website are about the prostate and probably a good 2/3rds of those are about prostate cancer. And some of them are really interesting and sometimes if the abstract is sufficiently interesting I then go and read the whole paper, which is quite easy to do.

My wife and I repaired to a Starbucks and I broke the news to her over a cup of coffee [sigh] and suitable words of support and reassurance were extended. And then began the big quest to find better information and figure out what to do.

Yes.

So it, although it was a shock it was not a shock of such magnitude as to send me to pieces. It was a shock of sufficient magnitude to send me straight onto my broadband to start figuring out what do I do to attack this thing.

So the Internet has been really helpful to you?

The Internet has been wonderful for me, yes. Although it’s, as on almost anything you might search for on the Internet it’s almost simultaneously a blessing and a curse. The more skilled and gifted you are at differentiating between the rubbish and the good stuff the more useful the Internet can become but there is no shortage of rubbish out there. You really do need to trawl through information sources quite discerningly. And really what I was trying to do when I went through all my searching and surfing was triangulate different sources of evidence and place slightly greater reliance on streams of evidence where they were all saying the same thing and they appeared to have good evidence on their side when they were saying it. And I took a slightly more dismissive line on the less well-researched and slightly more flaky testimony which is out there in huge abundance.

But did you find patient experiences helpful at all?

Yes, yes I did and my two main access routes to the experiences of other patients were through DIPEx (now Healthtalkonline.org) and through The Prostate Cancer Charity. Dealing with those in turn there was nobody on the DIPEx site talking in detail about the specific procedure that was my number one favourite intervention. But there are plenty of people talking about or writing about their experiences of prostate cancer generally and the assorted tests and investigations that are associated with prostate cancer. And there were people talking about other forms of surgery which at least bore a passing resemblance to what I was thinking of having done. And yes it is very useful to be able to contextualise my own anticipations and expectations and thoughts against the experience of somebody who’s been through it, very useful particularly so given that the vast majority of people who are on the DIPEx site are speaking in plain English and they are speaking very candidly about their basic human experience. So it simply adds very useful complexion to the slightly more academic or intellectual understanding that I was building up through other information sources.

And I ended up being very heavily reliant on my own initiative to seek out information that had not been spontaneously provided to me by any of the professionals with whom I came into contact.

Now I’m lucky in a number of respects. I’m lucky in the sense that I’m pretty proficient and experienced in navigating around the Internet and I know how to find good information. I’m lucky that I have fast broadband access at home and I’m lucky that I’ve spent 31 years working in the National Health Service either as a clinician or as a manager. So that also helped to guide me fairly rapidly towards the good stuff. But had I had, if I hadn’t had those advantages I think I would have found it really quite difficult to arrive at enough information to make a truly informed judgement and decision about the course of treatment that suited me best.

I hear fairly encouraging things in the NHS about the imminent advent of information prescriptions for patients and I know that there are a number of resources out there not least NHS Direct and particularly NHS Direct Online which is a very useful resource amongst many other useful resources. But I would hope that if in 20 years time either of my sons were to have the same condition by that stage we would be in an NHS that would equip them spontaneously with a much richer, more detailed, more specific, more evidence-based cross section of literature. And then in addition to the literature that is spontaneously provided I would hope that they would then be signposted towards other specific sources of information that could be relied upon rather than being left having to form their own judgments about what’s the good stuff and what’s not the good stuff.