Prostate Cancer

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 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. 
 

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 (now Macmillian Cancer Support), 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?

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 hexi.ox.ac.uk) 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.