前立腺がん患者の語り

I really believe PSA testing and screening should be done, I really believe it. They jump up and down and say 'Why worry someone to death when we don't have an effective treatment for it?' Well why don't we have an effective treatment for it, basically because we haven't spent the money on getting it, it's out there, it's not the world's best treatment but the treatments are out there and available in America so back you come 'We don't have the money for it.' But the criminal thing in 1999 the actual funds given for breast screening were 3.8 million and the funds from the Government towards prostate was ｣47,000.'

I believe it should be personal choice of the patient as to whether they have the treatment or not. I don't believe that someone up in the clouds should stand there and say 'You're not going to be tested because I don't believe it's to your value,' you know I believe sitting down here I should be able to say 'Okay I don't want to be tested, I'll take the risk,' but I want to have the knowledge and be able to be tested.

I think anyone over the age of 55 should request a PSA test on an annual medical to see you know what it is and then take advice from there and hopefully in the next 2 years there'll be more information coming out on it in any case.

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 he'll 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.

Yes, no matter what happens with seeding or Brachytherapy the actual seeds have to come from America because the company that made them, although it was one of the big National Health companies many years back only makes the seeds in America. And there's two types of seeds, there's the palladium and there's the iodine and the iodine is half strength so it lasts longer but it is weaker. So to get the same radiation effect you say it's going to last twice as long. They had to be brought from America and when you've been surveyed and declared suitable for seed implantation one of the things they do is they, using the ultrasound, they actually measure the volume of the prostate and depending on the volume will depend on how many seeds they're going to require to put in it because the seeds have to go in at equal spacing across around and all over. And it's shaped like a walnut, in fact in America there are people who wear badges shaped like a walnut with a ribbon on to indicate that they are prostate people. But having worked it out and in my case it was 62 seeds that were needed they then sent to America who make the seeds and they then, the seeds then come back and you're given an actual booking and they only come over a day or two before.

How long did it take to get the seeds from America?

Well in my case it was, it was taking 2 months, it has taken longer sometimes I know but 2 months is a reasonable one.

What sort of seeds were they, which ones?

Mine were iodine seeds and they're the only ones that have been used in England, only ones I believe that still are used really in England for this permanent seed implantation. Now this is permanent seed implantation where they put the seed in and it stays with you for the rest of your life although it's, to intents and purposes it stops emitting the radiation after about week 53, the actual seeds, so it's a declining radiation from when it's put in.

After 53 weeks?

Down to 53 weeks yes. The other higher density seeds definitely in 97 could not be imported under the laws of atomic materials so you could only have the iodine ones at the time I went forward for them.

Are the other ones also left in?

They're left in as well. There's a third, there's permanent implantation on one of the two isotopes, the iodine or the P and then there's the high density temporary one where they are put in for may be you know a couple of minutes and pulled out and the next day put in and pulled out again, that's a totally different procedure. And I know there has, there is one that has started up doing that in UK but at the time I had mine done there was only one and it was doing standard Brachytherapy and permanent implantation.

I must stress about the hospital where I did have the Brachytherapy done was that they're a total one off within all the NHS ones I've come across because they weren't NHS and the staff had no clue whether you were private or NHS in there, absolutely no clue, you were treated the same and you were treated brilliantly. And everything was explained from the minute you went in the door, absolutely everything was explained which was the first time it had been to me. And I was talking to an NHS patient in there and he was exactly the same, no difference...

(Laughs) well the seeds are implanted every - - - basically in the perineum. They're inserted on long needles.

Through the perineum?

Yes and you are, you're actually in a stirrup position you know as the nurse says "Now you know what it's like giving birth," you know and in America it's very often considered an out-patient one, it's done at 8 in the morning and you're down the pub at 1 in the afternoon and that's it. The good doctor who did mine had always had this principal and he trained in America by the way, he'd had this principle no he wanted his patients in the night before, in the night after and they would be checked before release the following day which I thought was a, you know a very nice attitude. But of course he wasn't looking at the money like in America every hour in the bed costs money so in and out. Generally in UK they will use a general anaesthetic you know and you'll be out whilst it's done but you have the option of just having a spinal block. In my particular case I didn't really want a general but in the end I agreed to have it and I had a spinal block and the general and I didn't feel a damn thing. I woke up and was offered dinner and I took dinner and that was it.

That's good.

So the seeds are actually put in needles so in my case shall we say 62, it wasn't 62 needles inserted, the seeds are one after the other and contained in the needles, in fact they're very often called Cera Seed because they're joined together like beads on a necklace which gives precise spacing.

Cera being CERA?

Yes it's a trade name of the company that does them. So they were put in one needle and they will pull the needle off and they're watching on ultrasound the same as when they were doing the survey on this probe that's inserted in you and they can actually see where they're laying the seeds and you know a skilled person can bend. And I've seen it said so many times and I believe it, it's not the fact you're having seeds, it's not how many you're having but it's the skill of that person putting them in so you know it really is not something you'd expect the average you know local surgery to say "We'll do it tonight." But no a mild discomfort is all I can say to it because the following day I was up. And they do leave a catheter in for normally 24 hours but I was up, they removed the catheter and there was an open day at the hospital and I spent 2 hours walking round the hospital looking at all the machines and talking to the people. So it's an invasive technique yes but it wasn't that upsetting.

So you felt really well enough to come home the next day?

Oh yes, yes I mean I've talked to a lot of people about it and they've come home and started work immediately. As is fairly obvious you know I work from home so yes I started work immediately.

Did you have to have any external beam radiation as well?

No that was not the philosophy of this particular hospital to do EBRT because there is a maximum level of radiation you can receive and I believe that the calculation involved giving a higher level on the seeds and not doing EBRT. Now there is one hospital I know now that does both and the statement generally is "Oh we catch what we missed," well I don't think that's very clever (laughs) because the state of the art equipment is still not spread across England, or Wales and Scotland and that is the conformal focusing one where they can actually focus the beam, I mean really focus it to a millimetre. But generally speaking EBRTs are somewhat hit and miss, they focus the beam by only allowing it to pass through holes in bricks and they cut the bricks for you know the different people.

Following the seed implantation for the first 21 days there is a build up which no doctor is going to tell you about, you find out about it or you read about it on the Internet but there is a build up in intensity and the various muscles and things inside start to say ouch what's happening here. So you will be probably wanting to pass water but not able so you're given tablets to allow that to happen, then it happens too often and you're up 6 times a night. But you can pass through that period within 3 weeks no problem. And again I believe it comes back to the treatment is there to help you live or extend your life, the discomfort that goes with it is a by-product that you have to tolerate.