Basically we have to say that anything anybody has heard of that’s aged more than 5 years about prostate cancer you can really forget it. Unfortunately most GPs go back into 1970 with their knowledge so that’s a bit hard. But the biopsy if under a DRE which is with a digital examination by your urologist, he finds anything wrong with the shape of the prostate such as it might be expanding to one side or both sides then almost certainly hell want a biopsy. Now these days the biopsy is done by a probe, which has ultrasound capability so it’s inserted rectally, and the doctor or the surgeon can see on the monitor exactly where the prostate is. At the end of the probe, which is you know to put it bluntly is just rather like a banana, it has got needles that under a little stab of air pressure can shoot out and grab a sample of tissue. And the objective is to take between 3 and 6 samples round the prostate itself and they can come out as little cores, in very find needles and be sent away to examine for what content there is.

The sad fact is if they don’t find anything in there that’s a very limited shot of 6 little stabs with a needle. And they’re not massively painful, that are going to make you shoot out of the bed or scream in anguish, you’re normally lying on your side and you sort of ‘ooh,’ it’s about, I don’t know 1/10th of the pain you’d get from having an injection for a tooth, if you put it on a relative scale, so it’s nothing to be terrified of. And they will then take them away and examine those cores. Some places they will mark the cores on a clock face, ‘Core 1 was at 12 o clock’, others they just take the cores. In my case they didn’t note where they’d come from but they did note that 3 of them had 20% cancer and that’s what comes back. If they come back and say none of them had cancer it’s a shocking thing to think you probably may still have it but they just didn’t hit the 3 places where it was because the whole gland is not normally cancerous, it’s areas of it.

The 6 point biopsy I was told would be uncomfortable and I might sort of feel slight pains like having an elastic band zapped at me you know sort of inside your backside and yes I suppose that really was what it was like. It was a bit unpleasant you know having sort of a big tube poked into your backside and then this gadget that sort of goes in and takes these 6 samples from you. But it’s over in, I think it took about 20 minutes, something like that. I was counting them and unfortunately he said that 2 of them hadn’t worked very well so I had 8 instead of 6.

You had to remove your underclothes and it’s a very small like pen like torch type thing, it inserts into your back passage and attached to this is a method of taking slivers off the cancer. And it’s not a very pleasant experience, not a lot of pain was experienced except when they were taking the samples, it was just like a little red hot needle and I think they took about 6 or 8 of these samples which was sent off for biopsy. I wouldn’t let this put anybody off. I was lucky enough to have a chap who knew what he was doing. The most discomfort I found was the fact that you are overlooked by, in my case a young nurse, who stood at the front of you telling you not to worry. But it was more embarrassment than pain owing to the fact that this young girl was just stood alongside you whilst it was being done. But I certainly didn’t feel a lot of discomfort.

Privacy and dignity I think remains a challenge for the National Health Service. And much as with health information for patients I did encounter some truly fantastic practice from some truly admirable practitioners but I also had some exposure to the other end of the spectrum, people for whom privacy and dignity of a patient is clearly not a particularly dominant concern. There were occasions when whilst going through some pretty undignified procedures either with the biopsy for example or the cystogram for example, there were occasions when doors were flung open and people would just walk in and out and not introduce themselves and they clearly had nothing to do with what was going on with me. And whilst I can tolerate that up to a point in a dentist’s chair if the dental nurse walks in and out it’s quite different from when, put bluntly, your ass is sticking up in the air.

I’ll illustrate it with just one or two examples. At the pre-operative outpatient stage after the TRUS biopsy (the trans rectal ultrasound biopsy) whilst waiting in a crowded corridor full of other patients and their relatives a clinician whom I’d not encountered at any stage during the procedure itself and who had her coat on ready to leave stuck her head into the crowded corridor to shout in my general direction that I should expect to see blood in my semen for a period of time after this biopsy. Now admittedly that’s useful information to have, I don’t deny that but the circumstances under which the information was delivered was far from ideal. It caused all heads to turn in my direction for what was for me the unique experience of being in a crowded corridor of a bunch of people who all were probably thinking about my semen [laugh] and I’d rather they weren’t. Now that was a highly avoidable example. It would have taken literally just seconds longer for me to be taken to a room somewhere or even just behind a curtain somewhere for this information to be imparted to me with a little greater discretion. So I firmly believe that that has nothing to do with resources. It has to do with personal choice, personal practice. It has to do with training. It has to do with culture. Perhaps it has also has to do with managerial performance management practice because these things go on because we work in a system that allows them to go on. If we stopped allowing them to go on then they wouldn’t go on. So that, that is one example.

So it’s at that kind of level that I think that privacy and dignity are not always well attended to. Although I hasten to add that I did have plenty of exposure to the other end of the spectrum as well. Some really admirable clinicians and wonderful human beings who did a first class job of plying me with information and also attending to my privacy and dignity. They deserve the credit but I’m just making a particular point about what I hope would be the minority of people at the other end of the spectrum. But it’s a minority that can make a fundamental difference to the patient’s experience of the process of care.

And a biopsy was done in ’94 from which I got septicaemia and almost died.

Oh dear, tell me about that a bit more please, the biopsy, is that very painful or just uncomfortable?

It was ghastly, I suppose I have a very small anal area and that I find, I found the sampling procedure somewhat traumatic, it was very painful and very unpleasant.

Yes, I’m sorry. So did the pain last afterwards or just during the procedure?

Well it was during the procedure, I didn’t feel anything afterwards. But the strange is that I wasn’t given any tablets or anything like that, I wasn’t given any medication afterwards and of course I thought I had flu and it got very bad indeed. And I was rushed to the hospital and given, I was in hospital for 4 days with an infection.

So you picked up infection having the biopsy?

That’s right there was a cross infection yes.

Oh dear.

And had it lasted another, I was told if it had lasted another 8 hours we wouldn’t be having this interview now.

A disaster.

Yes.

I’m so sorry. Right so your experience of the biopsy was awful.

Well it was, it was not a, it wasn’t pleasant in so much I don’t think the, I didn’t think that the, I suppose it was because I’m a person that suffers anxiety and I get tensed up and I suppose not being in a relaxed situation and having that style of I suppose treatment done was not, well I didn’t find it appropriate.

Was that a National Health Service?

No that was privately.

I’d then come off the private health and gone back into the NHS and I was then treated to another sampling technique which I found very unpleasant because the guy insisted on taking 4 samples.

Another biopsy?

Yes another biopsy.

Was that equally painful?

Worse this time really and he wanted to take a fifth and I said there was no way that he was taking a fifth. Yeah I thought it was quite unnecessary. But anyway that was, I had the antibiotics then, so no infection back from it. The results of those, this was in 19, early I suppose 1997, late 1997 early 1998.

Can you tell other people what it’s like to have a biopsy in as much detail as possible.

Unpleasant because you have, it’s… you have a tube, it’s a tube that goes up your rectum and they take a bit of the prostate away and it’s an unpleasant feeling until the end, and that is painful to the end, but that’s again only a minute and they were very good. The doctor or technician I don’t know who did this, because they said ‘When you feel the pain well then stop and then you can get yourself ready for the last bit,’ and they actually said to me ‘because it will be painful. But it’s you know it’s a quick pain and then it’s all over, but they were very, again the person who did it was very thoughtful because they understand what it’s like.

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