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Prostate Cancer

Finding information on prostate cancer treatment

Many of the men we interviewed reported that their doctors had given them plenty of information, and enough time to discuss various treatment options. 

 

Richard was given plenty of information about all the possible treatments suitable for him.

Richard was given plenty of information about all the possible treatments suitable for him.

Age at interview: 51
Sex: Male
Age at diagnosis: 50
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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.

 

 

He got the results of his PSA test and his Gleason score, and then discussed the treatment...

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He got the results of his PSA test and his Gleason score, and then discussed the treatment...

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Then I went back to see my surgeon and of course he by then had my Gleason score from the biopsy. It was a semi-formal interview, we are on friendly terms anyway and he said, 'Well let's look at all these results together' and he said, 'Well, the PSA is excellent, 7.2 and the bone scan looks splendid' and he said, 'Nothing to worry about in the shoulders we've decided. And the MRI, nothing to be seen, and it seems to be the tumour is actually confined to the gland.' And he and I said, 'That's excellent.' And he said, 'You're now 67 and you haven't got any relevant history but I'd like you to have a cardiologist's opinion but if that is alright I think we should go ahead.' Now we discussed, a formal talk on you know, radiotherapy versus surgery or even watchful waiting and he said that in his view this would not be a good one for watchful waiting. And then I thought well, we've been through everything but what about the Gleason and I said, 'Now what about the Gleason score?' And he smiled and said, 'Oh, I wasn't really going to talk about that, don't let's think too much about that' and wrote it on a bit of paper and handed it to me, you see, and it was 8 which as you know, really puts you in a very high risk group. And so I said, 'No, perhaps you'd better not talk about that any more but don't let it interfere with what we ought to do.' It would, of course, rule out radiotherapy as the principal form of treatment.

So in his opinion surgery was really the only option?

In my opinion and his opinion. We were absolutely at one about that.

Did you feel that all the options had been well presented to you at that stage?

Yes, I mean I knew the options and we went through them very thoroughly but very quickly. I mean it was not a long interview but everything relevant was said. It was going over very old ground between us because we'd had similar talks about, you know, very many patients between us before.

 

Richard also looked at websites which helped him to make his decision to have brachytherapy....

Richard also looked at websites which helped him to make his decision to have brachytherapy....

Age at interview: 51
Sex: Male
Age at diagnosis: 50
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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 they're 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.

 

Some men knew very little about prostate cancer before they discovered that they had the disease. They had been happy to be guided by their doctors. For older men, or in cases where the cancer had spread, the options were more limited. A few men felt that they had been well informed but would like to have received more guidance from health care professionals. Some were aware that there is little agreement about what should be done at various stages of the disease.

 

Explains that after much debate his doctor agreed to a prostatectomy.

Explains that after much debate his doctor agreed to a prostatectomy.

Age at interview: 70
Sex: Male
Age at diagnosis: 67
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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.

 

Concludes he was happy to be guided by the doctor in his decision for treatment.

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Concludes he was happy to be guided by the doctor in his decision for treatment.

Age at interview: 65
Sex: Male
Age at diagnosis: 65
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Did you feel you had enough time to discuss it all then?

Oh I think so, I think the consultant, when we met was excellent. Now whether we would've had that sort of one to one opportunity had somebody not told me that over the telephone [that he had cancer], we shall never know, but we had this one to one with the consultant who explained everything.

Did he explain the advantages and disadvantages of each of the options?

Yes he did, yes and all the side-effects, the drawbacks, and you know, what the advantages were. So we then said 'Well you know what's the next step?' and the next step was for me to then see the radiotherapy consultant or whatever he was.

Did you feel it was your decision to have the radiotherapy or were you very much guided by him?

I think I was guided by him. He had said that the planned treatment for me was radiotherapy with perhaps a supplemented hormone treatment as well.

 

Explains why he was discouraged from having radiotherapy.

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Explains why he was discouraged from having radiotherapy.

Age at interview: 70
Sex: Male
Age at diagnosis: 68
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So this is metastatic, whatever we call it, cancer. Time passes a little bit now and again and we go back to the urology department and now these options once again are out on the table but the surgery one is no longer an option and of the other two I thought I might receive the radiotherapy, personally, but you know I'm not the expert, I just thought that, but they said the hormone injection is the thing to go for at the moment, this is the way to go, not the therapy, the hormones. And before the injection of the hormones commences we have some tablets which does the same thing so for a couple of months or so I was on these tablets, I forget the name of them, leading to the commencement of the injections at the local health centre which I've had now, I must've had about 3 of those now, they're every 3 months. There's a monthly one and a 3 monthly one, I'm on the 3 monthly injections.

Did they explain why you weren't a suitable candidate for radiotherapy if that's what you thought you might've liked?

Mm they said there were side-effects from it which at this stage they didn't think it was suitable, there were nasty side-effects and they thought that the hormone treatment was the kinder way to go about it at the moment, so one accepts it, that's it, I had to accept that. But yes I was, something at the back of my mind, engineering-wise made me think that the therapy was more of a solid and more preventative method than these injections but they, they said no to that, the hormones was the best way to go so you know I had to accept that.
 

 

Considers he was not offered any options in his treatment at all.

Considers he was not offered any options in his treatment at all.

Age at interview: 70
Sex: Male
Age at diagnosis: 66
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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, we'll 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.

 

Explains why there were limited options for someone with advanced prostate cancer.

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Explains why there were limited options for someone with advanced prostate cancer.

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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Well at the initial stage of course I had no real, there were no treatment options for someone with advanced prostate cancer at that sort of stage. It is essentially, or as far as I was aware at the time, I should say it was hormone treatment or nothing. There was no operation you can do, which is you know, I think there was a complete consensus on that, as far as I'm aware, for someone whose cancer has spread beyond the prostate. I think the situation would've been, I know it would've been far, far more difficult if it hadn't spread beyond the prostate, it would've also been better but the decision process would've been, knowing what I now know, very, very difficult and I had a friend the other day who was diagnosed with just that and I really didn't know what to say to him.

 

Concludes he had been well informed but would have liked more guidance.

Concludes he had been well informed but would have liked more guidance.

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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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.

 

Concludes he was well informed but was disappointed at the lack of consensus over what can be done.

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Concludes he was well informed but was disappointed at the lack of consensus over what can be done.

Age at interview: 56
Sex: Male
Age at diagnosis: 56
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I was very impressed with the registrar for the oncologist who explained everything in great detail and certainly answered any questions. So as an individual I felt I had all the information he could possibly give me and he explained it all very well. I'm aware that there doesn't seem to be any total measure of agreement in what is best in the approach to the disease and the treatments in various countries vary enormously. So I don't know. I have discussed it with other medical friends and as far as I can see the choice that I've made and was being made for me seems to be as good as any in terms of current thinking. I am, I suppose, a bit disappointed that there isn't a bit more consensus yet over what should be done at various stages and what can be done but I think, I think I'm happy with the information flow.

Some men argued that they had not been given adequate information, and that health care professionals had failed to explain the treatment options. One man, who had had a radical prostatectomy, wished he had considered other possible options and side effects more carefully, and another man wished that his doctor had discussed self-help, alternative medicine and psychological aspects of care as well as physical treatments. Charities, support groups and other men who had experienced various treatments were all useful sources of advice, and some men said that they obtained far more information from these sources than from health care professionals.

 

Wishes he had considered other options and the side effects of a radical prostatectomy more...

Wishes he had considered other options and the side effects of a radical prostatectomy more...

Age at interview: 63
Sex: Male
Age at diagnosis: 56
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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. 

 

Concludes he had not been given adequate information or advice from the professionals involved.

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Concludes he had not been given adequate information or advice from the professionals involved.

Age at interview: 83
Sex: Male
Age at diagnosis: 81
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When the doctor first told you you had the prostate cancer how did that make you feel?

I just asked him what it was 'Oh you can have this operation, but you can't have it you're too old.'

Is that what he said?

Yes.

Did he explain a bit more about it, show you any pictures or diagrams?

Nothing at all.

Nothing, how long did you have to talk to him at the clinic?

4 minutes

4 minutes oh dear that's not very long is it. Did you get to talk to anybody else about it, like one of the nurses?

No when I seen, no it's always the specialist, just the two of them yes, Dr X and the younger one, Dr X, and Dr X just spoke in a machine, after that he just said 'Alright appointments every 6 months.'

And then you say you only had about 4 minutes at that consultation for him to tell you about it?

Not even 4 minutes

Have you got any other questions you'd like to ask him?

Yes, well why is there no talk about treatment or anything, just that injection in the belly and that's it?

Did he explain what the injection does?

No he didn't.
 

 

Wishes his doctor had discussed self-help, alternative treatments and psychological aspects of care.

Wishes his doctor had discussed self-help, alternative treatments and psychological aspects of care.

Age at interview: 66
Sex: Male
Age at diagnosis: 66
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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.

 

Describes the useful advice and information he received from the Madam Curie charity.

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Describes the useful advice and information he received from the Madam Curie charity.

Age at interview: 77
Sex: Male
Age at diagnosis: 76
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They have got a retired sister who knows about this and she also drew drawings for me and she told me this is what's that, this is what's going to happen, but nobody else explained to me.

So it was just a charity who explained to you?

A charity yes

Which charity, is that Cancerlink or?

Madam Curie or something.

Madam Curie, so they sent you information?

No they have got a big room there they gave you cup of tea, sit down and then you had an appointment with the nurse, I mean the sister. 

Yes

She is retired, and she comes and she sat with me about an hour or so and explained whatever and they gave a lot of pamphlets after so you can read this, what food you should be eating, what should be done, all those things. I had more information from them than the doctors. And I think anybody going in for this they must go to one of these. They give you much more information than the doctors, that is my experience I don't know about the other doctors. So they gave me this treatment, it will be for 4 weeks starting in the month of March.

 

Explains that his doctor was not helpful so he sought information from Cancerbackup and Prostate...

Explains that his doctor was not helpful so he sought information from Cancerbackup and Prostate...

Age at interview: 65
Sex: Male
Age at diagnosis: 59
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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.

 

Concludes the fullest and most useful advice was from Prostate Cancer Charity.

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Concludes the fullest and most useful advice was from Prostate Cancer Charity.

Age at interview: 68
Sex: Male
Age at diagnosis: 66
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Obviously the news that I had cancer was a shock and the urologist then had me have an MRI and bone scans to confirm that the cancer had not spread outside the prostate gland. Nevertheless with regard to treatment the urologist spoke of only two choices, between prostatectomy which would be quick and radioactive therapy which would be for daily sessions for a period of I believe 12 weeks. He would arrange for a booklet to be sent to me but this hadn't arrived after a week and my wife and I decided to get hold of as much information as quickly as we could. Several relatives and friends who had access to the Internet began sending us helpful printouts from web sites listing treatments, and useful books, which are all available from various charitable help lines. The fullest and most helpful information had been published by the Prostate Cancer Charity who are in Du Cane Road, London and they publish fact sheets for each type of treatment and the various side-effects. Especially helpful was a list of men who had various treatments giving dates and telephone numbers. This meant I was able to telephone another man to talk about his experiences.
 

Those who had access to the Internet found it extremely helpful, and at the time some American websites were thought to be particularly useful by the men we interviewed. Some men mentioned that websites provide more information than can be easily absorbed, but that information may be out of date. Some also felt that they had become 'expert patients', probably knowing more about prostate cancer than many of their doctors. Other men sought out books, pamphlets or journal articles for additional information.

 

Richard thought that he obtained better information from the Internet than from the pamphlets he...

Richard thought that he obtained better information from the Internet than from the pamphlets he...

Age at interview: 53
Sex: Male
Age at diagnosis: 47
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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.
 
 

 

 

Comments on the information he gained from American sites on the Internet.

Comments on the information he gained from American sites on the Internet.

Age at interview: 57
Sex: Male
Age at diagnosis: 56
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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.

Mike who was interviewed in 2007 was not impressed with the photocopies and leaflets he was given by the specialist. However, the leaflets provided the terms that he need to make internet searches. He spent two and a half months finding out about treatments (mainly via the internet) before deciding to have a robot-assisted laparoscopic radical prostatectomy.

 

Searched on the internet as soon as he had the diagnosis. Was able to distinguish between useful...

Searched on the internet as soon as he had the diagnosis. Was able to distinguish between useful...

Age at interview: 48
Sex: Male
Age at diagnosis: 48
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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. 

 

Found the DIPEx site (now Healthtalkonline.org), and talking to a former patient, useful sources...

Found the DIPEx site (now Healthtalkonline.org), and talking to a former patient, useful sources...

Age at interview: 48
Sex: Male
Age at diagnosis: 48
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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.

 

Hopes that the information provision in the NHS will improve so that everyone will be directed to...

Hopes that the information provision in the NHS will improve so that everyone will be directed to...

Age at interview: 48
Sex: Male
Age at diagnosis: 48
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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.

Helping men decide which is the best treatment for them is one of the research priorities identified by the Prostate Cancer UK
 
Last reviewed July 2017.
Last updated July 2017.
 
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