76. Back In The day. Part 2. Your Proton gun or Mine

Proton-Gun-2-Small

It’s been a little difficult since I posted here last month. A friend that I went to secondary school with was given a devastating prostate cancer diagnosis. 

Other than a brief initial conversation, he is not communicating with anyone. He will throw out the odd WhatsApp grenade where he expresses one of the recognised stages of grief according to Kübler-Ross,  

  • denial.
  • anger.
  • bargaining.
  • depression.
  • acceptance.

I think sorrow needs to be in their somewhere but what do I know.

We have a WA group containing a few others from secondary school and so far he has only spoken to one of us. I am trying to get him to talk to someone, anyone but that is proving impossible at the moment. Even though we were never really close, I really feel it for him. I wish I could be more detached, like a doctor has to be, but I’m not. In the nicest way possible I wish I could care less but unfortunately its not happening. 

If I am being honest with myself I am regressing in a couple of areas. Maybe that was already there and denial only works until some creepy kid hits the wasps nest with a stick. Eventually the pissed off wasps find something to sign the shit out and then peacefully go back to the nest.

This was the big stick.

Anyways pushing aside the little grey cloud we are going to continue where we left off from last month.  I have the second part of my chat with Dr Simon. He is a font of knowledge regarding prostate cancer, wrapped in a no nonsense jacket. He does not pretty it up – he calls a pig a pig and a rasher of bacon an unfortunate but tasty pig.

I was just talking to someone yesterday about one of the reasons I created this blog was because of the lack of information regarding what is actually going to happen to me regarding prostate cancer after the surgery. There are many men talking about their symptoms, that bit in the middle most gloss over and the final ‘I’m much better now’ part.

That bit in the middle. 

Oh just to help you – A sphincter muscle is a ring like muscle that is able to contract or close a bodily passage or opening. You are very welcome 😉

 

Part Two

Simon: Yes, the other thing nobody tells you, certainly with radical prostatectomy is that you lose penile size. Both erect and flaccid, you lose it because the supporting structures are no longer there and it sort of disappears a bit inside you. I found that quite difficult and it’s an ego thing and I am fairly ego centric I think.

Peter: We all are.

Simon: To me the important thing, particularly with the incompetence was to wear the underwear that I normally wore. I belonged to a gym, I wanted to change with everybody else. I had an incontinence nurse who came and saw me and all she wanted to do was to get me to use a convene because that was the most convenient. I couldn’t use 10 pants a day, it just wasn’t something that my brain would ever had contemplated. Although I’ve met lots of men for who it was a revolution, the best thing that happened to them. One of my friends, he loved gliding and it very severely restricted how far he could glide. Once he had a convene on, he could glide for 3 hours. Best thing that ever happened to him. So I also started ‘low dosage Isosorbide’ 5 milligrams a day, there’s no strong scientific evidence to support it but many people think that it will speed up the healing of your nervous system because it increases blood flow, that’s how it works.

Peter: What is it?

Simon: Low dosage Viagra Isosorbide’

Peter: Ok. Once a week or more than that?

Simon: Once per day

Peter: Oh, once per day!

Simon: Yes, but a small dose. Let’s say if you’re going to use Cialis is a better drug in my book, if you were going to give it to someone as a one off just to produce an erection, I wouldn’t say to produce, maybe to enhance…you’re talking in terms of 10 to 20 milligrams. We’re talking 5 milligrams a day. Very slowly after about 6 months, then I did see that when I was sexually excited, a little bit of something happening. It wasn’t an erection, but it was something. I didn’t have spontaneous erection for about 15 to 18 months. After that, it did improve and yes, by using Cialis now when we need to, I can have a sort of erection. What people don’t realise also is that you’ve got three blood spaces that fill up in your penis. If they’re not filling up the same on either side then it will bend, as one side fills more. So you can get what’s called Peyronie’s disease. But, also one of those spaces also fills the head of the penis, and it’s not uncommon having spoken to a lot of men about it, a lot of men don’t ever get the head of the penis becoming hard. That’s often the most sensitive area, particularly if you’re having penetrative sex, then it’s much more difficult to get an orgasm. And for various reasons now, I haven’t had penetrative sex with my wife now for

the best part of 11 years. But we still have a sexual relationship and you relearn what you need to do. The slightly amusing this I suppose is that because of my incontinence, I didn’t have a dry orgasm I had a wet one but it was urine. In the early days it was like a hose pipe, it was ridiculous. What’s really interesting now is because I’ve got the sphincter in, I’m never really incontinent at all on any note. I always spirt urine when I have an orgasm, so the pressure…I couldn’t hack it. I couldn’t voluntarily squeeze so hard that I could bypass the sphincter. Orgasm goes everywhere. It’s really been a totally eye opening experience. The  reason I got involved with PCUK was I wanted men to get knowledge. I also joined another charity that’s involved with prostate cancer called Tackle.

Peter: I’ve never heard of them.

Simon: Right, I’ll talk to you about them in a second. Was I wanted men to get knowledge, I wanted, I suppose I’m on an ego trip as well. I did a lot of teaching, lecturing and stuff when I was a doctor and I thought I was reasonably good at it, so I wanted to continue with that.  Doing awareness talks is great fun. I’m not as bad as one of the people I have heard talk. One guy, who obviously had little knowledge about prostate cancer. He was an absolute nightmare.

If somebody asks me a question that’s medical and I can answer, I will answer it. Whereas, those speakers not medically trained, should say no. That’s how I’ve become involved in medical education committees and that sort of thing. But also, I’m very happy to talk very frankly to anybody about my experience if you like. Now, you have to be very careful that people are not using that as a sort of catharsis for themselves, that it’s not about the person you’re talking to it’s about them. You have to be very careful about how you tailor what you say to the person you’re talking to. Many of the people I talk to in realistic terms are perhaps not the right person in theory because they’re having treatments I’ve never experienced. But I’ve kept my knowledge up to date, I do talk to a lot of people and I’m a bit a bit of a parasite really because I feed off them and retain that knowledge, so you can relay somebody else’s experience to somebody else even if it’s not your own. But I talk very freely to guys about sexual dysfunction, I go around to a number of other support groups and talk about A incontinence and B sexual dysfunction and it is amazing how once you open up that floodgate just a chink…

Peter: Yes, guys feed off honesty

Simon: My sort of ethos if you like is to firstly describe what’s going on, people need to know the anatomy. Not in huge detail, but it’s quite shocking how men go through things and women to be honest, and not understand their bodies. If you know what keeps you continent and you know how that’s damaged, you can understand now why you’re incontinent and what the restrictions may be of it ever getting better. I mean, in theory, I’m still incontinent. If my Sphincter fails, I’m incontinent and I will be incontinent for the rest of my life. That’s not something I relish, the Sphincter can be replaced and you need also to be physically able within you’re anus. Because if I got arthritis and couldn’t squeeze my thingy, or somebody who had already got severe arthritis, it wouldn’t be suitable for them. You know, it’s all those sort of things and it’s keeping up with progress.

Peter: Speaking of progress, do you know what the photon therapy is?

Simon: ‘Proton’ therapy? Yes, I do. Conventional radiotherapy uses high dosage x-rays, now x-rays have to go through to your target organs where it acts, but it also comes out the other side. So you’ve got what’s called an entrance dose, you’ve got the dose to the prostate and you’ve got what’s called an exit dose. Now, you get round that problem these days by, when you’re having radiotherapy, rotating the treatment head all around the body. So that no area gets constant radiation except for the middle bit and that’s where your prostate is.

Peter: Right, it’s like cooking in the microwave. It will warm up from the middle out, is that basically what you’re looking at?

Simon: Yes that will do, I like that! Yes. So you focus it. Conventional radiotherapy now is always what’s called 3D CRT which is three dimensional conformal radiotherapy. What that means is, with your scans beforehand, they can have some idea of the shape and size of your prostate. So as the head goes round it changes its shape of its beam, so it tries only to get it concentrated on that prostate area to reduce the collateral damage. There are other bits now called IMRT so as well as changing the shape of the beam, it alters the dosage that’s given. So if you’re going through a thinner area and there’s less distance between the head and the prostate, it can use less energy. There are various other ones, there’s one now called IMG radiotherapy, which not only goes around you, not only alters the dose, but has a CT scanner in the head as well so it’s constantly monitoring the shape of your prostate. I mean, these machines are incredibly complex.

Peter: And these are all types of proton?

Simon: No, these are types of conventional radiotherapy. Now, proton beam therapy is entirely different. The energy source is not x-rays it’s protons, whatever they are. They’re made in this big machine which lives in the bowels of the earth, a bit like a mini hadron collider thing. But it looks the same, it’s got a head that goes around the patient. Now protons, when they’ve been focused and hit their target organ do not progress, they do not go outside you. So there is an entrance dose, but there’s no exit dose. Now what that means is that particularly you’re always worried about your rectum. The entrance dose is much less damaging so you can now, as far as I understand, proton beam therapy for your prostate is only done in one plain. So you narrow the beam, so that your rectum isn’t in that treatment beam. Now that’s only suitable for about 15 to 20% of men who need radiotherapy for their prostate, all sorts of reasons why. So it’s not the panacea, all of these new treatments you’ve got to be so careful that you don’t read the Daily Mail headline and think this is the answer to everything. It never is.

Peter: Is that why it’s not used over here?

Simon: It’s very expensive. The kit…in Reading where I live, they’re just installing privately a company have just put in a new cancer treatment centre, state of the art MRI all of this sort of thing, radiotherapy, whatever but they’re putting in the 2nd private proton beam in the UK. Now this thing, I saw it delivered…

Peter: Where’s the other one?

Simon: In Swansea. There’s one planned in Liverpool and somewhere up North, you will have seen in the newspaper that they Christie Hospital in Manchester have just opened their own proton beam unit, the same machine that they’re using privately I think. But, you’re talking in terms of millions for a machine.

Peter: More than the Da Vinchi?

Simon: Oh god, yes! The machinery, the actual guts of it, it’s 57 tonnes. It has to be in a concrete bunker, the stuff that makes the protons and the one in Reading I think has 4 metre thick concrete walls around it. It’s almost like atomic weapon standard for protection. But it’s another way forward, it’s just a very different way of doing it. The other thing that’s also becoming more prominent…the problem is, the rectum is close to the prostate. When you’re doing conventional radiotherapy, there is an area around the prostate of higher dosage than you really need. That’s where you get the rectum damage. So what’s the easiest way of preventing that? Separate the two and there is a technique now which injects a gel into the space between the prostate and the rectum, so you separate them so that the rectum now comes out of the potentially damaging fields. Now it’s not applicable for everybody, it’s not yet NICE approved, it’s not in the NHS yet, it’s very early days. But something as simple as that, might become for many people, a standard. If particularly you’ve got peripheral tumour that hasn’t spread yet so you’ve got to get that radiotherapy beam right to the prostate. If it’ deep within your prostate and that’s where you’re treating, you won’t have any damage to the rectum. So, so much is changing.

Peter: I thought, when I was given the choice; radical surgery, hormone treatment and radiotherapy, it looked like a no brainer. The radical looked like a no brainer, compared to the side effects of the other two.

Simon: How old are you Peter?

Peter: 50. So I went for the radical, not only just going through the list…it was that last one that said if this doesn’t work, you may not be able to have surgery or you might still need surgery. So I thought, sod that I’ve got to have the thing taken out. But you wonder why they give you a choice almost, I understand it that for older men…

Simon: Yes, it’s age related. These days you have to give patients choice, whether they want it or not. That’s the PC thing to do. And some people want choice, some people don’t. I’m going to chair a workshop at a conference I’ve been asked to do, talking about shared decision making. Now, lots of men particularly come to our groups and say “I don’t know what to do, I wish they’d just tell me”. But these days, if things went wrong, you’ve got to tell everybody that they could have had something else. I think some men do get quite distressed by the fact that they saw a surgeon talk about this surgery, “why didn’t the other surgeon talk about brachia therapy?” Because brachia therapy has advanced so much, there’s high dosage now with fewer seeds. There’s low dosage which is what we used to do, and it will change even more. Certainly if I’d been given the choice of brachia therapy or surgery, I would have gone for brachia therapy every day. Again, because it hasn’t taken away my chance of further radiotherapy or surgery. And now, there’s some work being done that is suggesting that for me who have got advanced disease at diagnosis, so it’s already spread to bone or whatever, normally what they would do is say that hormone therapy is the right thing, you need blunderbuss systemic treatment for widespread disease. They were never offered radiotherapy locally for prostate or even surgery because they didn’t think it was worthwhile. There’s some evidence now which is suggesting that your lifespan will be increased significantly, statistically, if you have surgery or radiotherapy as well as hormone therapy. Now it’s not standard yet, this is the sort of research that’s going on. We are decades behind breast cancer, I remember very early in breast cancer when I was anesthetising, if you had an aggressive breast cancer the only choice you had was a really aggressive operation and mastectomy. Now of course, we’ve learnt that there are different types of breast cancer and like there are different types of prostate cancer. Some people need a lot of treatment and some people don’t. I think one of our biggest hurdles now with prostate cancer and awareness of prostate cancer is getting over to men, that yes we’ve diagnosed you with a cancer but it may never need treating. That’s a hard thing for somebody to accept, they’ve just given me this big word, the big C, but they’re not going to do anything about it because you don’t need it. Had I been given that choice, I certainly would have chosen a very different treatment path 10/11 years ago. The in word or the in phrase that I learnt the other day is decision regret, and you can’t, you can’t have that. You do what you do with the best that you’ve got at the time, but my aim now is to empower.

I’ve progressed a lot over 11 years, at the moment I’m really well. My PSA level is 0.0% bugger all, yes, it’s gone up by about .0012…I don’t know, whatever. That must mean sometimes that if it’s gone up, are there a few prostate cells there. So I’m never not going to have my PSA done, and one of our problems is if you’re going to say to somebody that you’ve got a mild disease and we’re going to go on an active surveillance programme, we don’t have a lot of experience about how long do you need to follow that person up for, and how aggressive do you need to be forever. Because there is the potential for actually making huge amounts of financial demands on the NHS. If you treat less people, but every year you’ve got to do an MRI or every 6 months you’ve got to do an MRI, that’s huge amounts of money and resources being used. And every year you’re compounding that because you’re treating less and less people. These are the things that I don’t think should bother us, I’m there to identify the right people for the right treatment. It’s not for me, it’s not for charities to have opinions because the NHS cannot meet the requirements, it’s somebody else’s problem. As a car mechanic, you don’t tell somebody there’s nothing wrong with your engine because you know they can’t afford to have a new one. It’s a really complex situation and the trouble is, patients and many volunteers don’t have that added knowledge that I’ve been able to gain from being involved with PCUK. The other charity is called Tackle Prostate Cancer, this was a charity organisation set up originally as a support organisation for prostate cancer support groups. So when we were setting up in Reading, it was already set up when I joined but they were given money through this charity to buy a projector, a screen, to pay for their first 6 months of hiring a hall to meet. It then changed its name to Tackle Prostate Cancer, rather than being run by salaried professionals as Prostate Cancer UK is, it’s run almost entirely by unsalaried people who are patients. So it’s very much more patient focused, they are adamant that there should be a national screening programme and there’s a lot of evidence which would support that, as well as evidence saying you don’t need to do it. It’s a really contentious area. It’s Tackleprostate.org. I was just looking through some stuff about PSA testing that you might find really interesting to read.

Peter: The reason why I ask is I’m seeing a friend tomorrow, he was diagnosed…well, he’s gone through the whole process now and they’re going to operate on him next week. What he said was, his prostrate was enlarged and the threshold has now gone down to 2.9 from 3.5 and they caught him at between 2.9 and 3.5, I’ll find out exactly what it was. Had it not changed, they might not have done anything. So when they did, they did a biopsy and his Gleeson was 7.

Simon: Now was that 4 plus 3 or 3 plus 4

Peter: I’ll find that out.

Simon: Now, these really important. We didn’t quite understand years ago how important that really was. If it’s 3 plus 4, then the majority of change is Gleeson 3.

Peter: That’s what mine was, 3 plus 4

Simon: If it’s 4 plus 3 then the majority of change is moderately aggressive, so there are some people who happily put 4 plus 3 on active surveillance, but there are not many. What multipara metric MRI will do is allow you to see the size of the tumour. The other thing to put in the equation which is important is something called prostate density. And look at that, because now multipara metric MRI can fairly accurately measure prostate volume. So relating that to your PSA is quite important. So if you’ve got a big prostate but a big PSA, your PSA density will be relatively low. If you’ve got a very small prostate with the same PSA, your PSA density will be high. There are people who are thinking that in the sort of PSA range 4 to 10, PSA density is as useful as the Gleeson score. Also, if you can target the biopsies, how many biopsies are positive on either side and what do they think is the percentage of prostate volume which is cancerous.

Peter: And the little I know, I think he had 11, 9 of them were cancerous. And I know on my one I had 24, and 19 of them were cancerous.

Simon: There is no doubt in my mind that I would have opted for radical treatment, irrespective of whether it’s 4 plus 3 or 3 plus 4, you’ve got that amount of change in your prostate. See in my day, I had only 2 either side but we don’t know what was within. We had no idea what was going on there and I’m pretty sure now that I had a small area which may never have spread, equally what’s good about Hrithik parametric MRI is that you’ve got some idea of how it’s encapsulated, even if you’ve got a little bit if it’s near the capsule then my thought processed on treatment would be different. I say in my talk, although it sounds a stupid thing to say to people, I say if we can pick this up early and you’re going to have to have a cancer in your life, have a prostate one.

Peter: I’d say the exact same thing, because it’s contained.

Simon: Absolutely Peter.

Peter: I say no cancer is bad, but if you have to have to have a cancer, prostate is the best one.

Simon: I did write and apologise to that guy for being totally over the top.

Peter: I thought it was…no, you’re passionate about something, I understand it. It’s like when we had the discussion about, I think it was the first…so it was back in September October when we had the meeting, that was the first one I went to and one of the guys there, he said he couldn’t believe talking to black men was any different than talking to white men. I said it’s totally different, totally different.

Simon: Yes, it is!

Peter: Because, the white guy will sit and listen to you and take it in. The black man, if it’s about his penis he’s already half way out the door.

Simon: Why is that? Is it an ego thing, is it all about sex?

Peter: That’s a lot of it, I mean me personally, it was a no brainer. But I wouldn’t have gone to get the test because as I saw it, I didn’t have any symptoms and it’s for old men, old men get it. So it wasn’t on my radar, once I knew I had it, it wasn’t a problem adjusting to it. I was like, look, this is what it’s going to be.

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