COVID -19 continues its relentless march across the UK. We are now looking at another round of restrictions but at least not another total lockdown. That said there has not yet been the fighting for toilet paper but it has now lead to a bit of panic buying in some shops.
I had seen in the news how charities have been particularly hard hit with the drop in donations and sponsored events. A few weeks ago I got an email from Prostate Cancer UK about how they have suffered as a charity with a massive drop in donations. As a result they were letting a number of people go, some that I had personally worked with. That was a really sad day.
I also continue to be told about guys that have been newly diagnosed at various stages in the cancer. Additionally, across all cancers, almost weekly there is another story about someone that has suffered because of a late diagnosis or delayed treatment due to COVID.
There was one thing that my smile was my daughter telling me how a boy in her class was boasting to his friends how his mother had lost her sense of taste and smell. The teachers eventually got wind of it and he wont be seen again for two weeks. I’m sure he wont be the apple of his mothers eye at the moment.
With all that in mind it would almost seem like a pleasure to go back in time, pre COVID, and talk about prostate cancer treatment.
Unfortunately, in the not too distant past treating prostate cancer was a far more brutal affair than it is now. Forget that girly key hole surgery stuff that is currently the norm.
Nope, a real surgeon cut you from one end to the other, like a dead fish being gutted and took the pesky blighter out with his hands. If you were really lucky he didn’t use his teeth to cut it off.
Back to one of the last meetings that I had at Prostate Cancer UK, I met Dr Simon. Although a bit scary at first he is actually a really nice guy that just does not suffer fools lightly. Let me remind you here.
I asked him if he would tell me how it was years ago and we had a fantastic interview. Here is the first part….
Simon: My background. I live in Reading, I became a consultant anaesthetist in Reading in 1981. I’d worked there as a junior, long story, but I wanted to go back there and work. I started life as 100% anaesthetist but very quickly I took on an interest in chronic pain and I set up and ran a chronic pain clinic in reading, so at the end of my days I was doing 50% chronic pain and 50% anaesthetics. During my anaesthetic career I was one of the major anaesthetists to the neurology unit in my hospital, so I picked up a lot of collateral knowledge as an anaesthetist because you want to know what the guy’s doing, well I do. Now my neurologist didn’t deal specifically with the treatment of prostate cancer, his particular interest was bladder cancer. So he wasn’t doing the surgery for prostate cancer but we picked up a lot of guys who through their investigations obviously did have prostate cancer. So I learnt a lot about the treatment, what happened before. Then I started to get prostate symptoms from the age of about 58.
Peter: How old are you now?
Simon: I’m 71 now
Peter: I would never have said 71! You wear it well.
Simon: I studiously ignored my symptoms, I was getting up two, three, sometimes four times a night for the toilet, each time was extreme urgency most of the time during the day i.e. if you’ve got to go, you’ve got to go. I learnt, particularly as an anaesthetist, that if you had a long case you’d have to pee before you started. My life then began to revolve around the fact that I had to keep going to the loo. Why did I not get something done earlier, you may well ask. I had what I thought was urinary problems about five years before my diagnosis. I saw my mate, he …this was in the middle of a private session we did together once a week. I was talking to him and mentioned that I was sure I had a bit of blood in my urine yesterday, and that’s always a bad sign. So he said “fine, I better do a rectal examination. I tell you what, it’s a short list, we’ll go over to my rooms and we’ll sort you out at the end of the list”. Sorting me out at the end of the list meant him taking some bloods, and surgeons are crap at taking blood I tell you! Having a flexible cystoscopy there and then, and having a rectal examination.
Peter: What’s a flexible cystoscopy?
Simon: It’s a cystoscopy, on a telescope, a small one. Local anaesthetic, well not much local anaesthetic. Had I had time to think about it, I wouldn’t have planned to do it at midday on a Tuesday because on Tuesday afternoon, I was at the same private hospital with a very busy gynaecology list and then I was driving straight to Cambridge afterwards to go and give a lecture. So it’s not the ideal thing to do, but anyway. He shoved his finger up my bum, and knew then I’d got a cancer. He didn’t tell me at the time, but straight away because of the feel of it, and that’s the one thing when I’m talking on my awareness talks to guys, it’s really important to get over to people that the point of view of a DRE is to not only to measure the size but to measure how it feels and that’s why, I’m pretty sure, if I’d gone to my GP he wouldn’t have picked it up because the changes were fairly subtle but Derek is doing it a 100 times a day, that’s what he does for a living. Equally, my PSA wasn’t raised. My PSA was the upper limit of normal when I was diagnosed. I’d been doing my PSA, as I’d be having some trouble for about 5 years, and it had always consistently been at the upper end of normal. Now, self-diagnosis is a bad thing but in those days, 10 or 11 years ago, we didn’t probably realise that if your PSA is in the upper half of normal, then you’re at a slightly higher risk. It’s logical, but we’re so used to having normal ranges in medicine and not worrying as long as they’re in the normal range.
To cut a long story short I had a biopsy, the biopsy showed that I’d got a mild disease, a Gleeson score of 6 which went up to 7 eventually, when I went to have another look. But it wasn’t highly aggressive on my Gleeson score, my MRI was negative. 11 years ago, the MRI was not done to look at my prostate, they weren’t sensitive enough then. Multi parametric MRI didn’t exist, so we were doing MRIs to look for secondary spread. My bone scan was negative so, minor amounts of disease. I’ve got biopsies which were positive on both sides of my prostate, I think it was only 2 out of 10 biopsies on either side, again those were not targeted biopsies these are having a look on the (in those days quite poor) ultrasound and thinking “well that looks potentially a funny area, we’ll have a go at that one”. So even in those days, if you had a negative biopsy, you had low grade biopsy which were even worse you don’t know when you’ve missed those small, highly aggressive areas.
Peter: So is the point of the MRI then to see if it’s spread?
Simon: Absolutely, it would certainly in those days see if I’ve got a highly aggressive disease and a big one which had spread outside, particularly to lymph nodes. It’s very good at looking at your lymph nodes and the pelvic area, that’s what they were looking at. Because I’ve got a big prostate, I got very significant flow problems, my choices for treatment were limited…
Peter: Because of the time, 10 years ago?
Simon: Because of the size of my prostate, now, I could have watched and waited, active surveillance is sort of…it’s very different, the different between active surveillance and watch and wait. Watch and wait is waiting for you to get into problems basically, active surveillance is much more opposite; being active and beginning to pick things up just as they begin to go wrong. That’s the sort of easy way to explain it. Couldn’t have brachia therapy, which would have been a much better option for a younger man because I’d got significant urinary flow problems.
Peter: That’s the one with the seeds?
Simon: Absolutely. Because the radioactive seeds, as they destroy the tumour, make your prostate swell. Then if you’ve already got urinary problems, you’ll most certainly go into retention. The size of prostate they were doing in Reading at that time was a 50 gram prostate, now they’ll do 100 grams, but for the flow problems I was doing radar anyway. I could have had external radiotherapy but at 59, that was not an option I was willing to go through because of the side effects potentially.
Peter: Any one in particular?
Simon: I think the thing that worried me more (and again we didn’t know in those days the long term side effects of radiotherapy) now we’re beginning to find people who had no side effects at all can start getting the gut problems and all sorts of things, potentially 5 or even 10 years down the line.
Peter: OK, because I’ve read somewhere that it fuses it to the prostate.
Simon: It can do, and don’t forget radiotherapy then, was again more blunderbuss, it’s not as focused and as controlled as it is now. The other major thing is if you’ve had radiotherapy, you can’t then have surgery as a secondary option.
Peter: Is that because it’s then so bashed up?
Simon: Absolutely, whereas if you’ve had surgery and have a recurrence, of course you can have radiotherapy. So my choice was basically doing nothing or having major open surgery.
Peter: It’s funny you should say that because that was the reason I went for the radical. Because I read that if you have the radiotherapy, there’s a chance you might not be able to have it out after. I saw that as a bit of a death sentence, and the reason for that is because it bashes it up and it fuses it, and if they try to take it out…
Simon: It’s called salvage surgery and it’s very difficult and very bloody because I know two men who have had the surgery quite a few years ago now. I don’t know anybody who’d do it now, but it’s a complete and utter disaster. They ended up with terrible side effects and all sorts of things. Salvage surgery for anything by its very name….
Peter: The name of it is just very…
Simon: So I had the major surgery done by a guy I knew, I had two major problems which normal people (if you can call it that) don’t have, one is I was a doctor, now that gave me a lot of knowledge and nobody talked to me Everybody assumes you know everything, yes I knew about investigation and I knew about what happens in theatre, I had no idea what to expect afterwards. I talked to one of my mates who’s an orthopaedic surgeon. I did his original cystoscopy with my surgeon and we diagnosed his prostate cancer then. So I went and saw him and he told me, face to face the sort of things that happened to him afterwards. That’s one of the major reasons why I started getting involved with support groups and PCUK, because talking to somebody who’s been through it, there is no substitute for that. Having somebody who is prepared to talk openly and honestly about what’s happened to them is just gold dust. It’s fantastic.
Peter: I spoke to somebody from my church who’d been through it a year before. We had a conversation and he pretty much said the catheter chaffed a bit and he had to have it in for 4 weeks and then he said that sex was great, sex was ok and that’s pretty much it, in a space of about 15 minutes. I came away thinking “oh great”. It may well be where he was and he didn’t want to fill in all the other bits but what he gave me was absolutely rubbish because it didn’t prepare me for anything and so for example, I’m seeing somebody tomorrow. He said he spoke to a nurse. I said “ok you can speak to a nurse but no disrespect, the nurse can tell you what she knows, what she’s read but she’s not a man” It’s like me saying I’ve read all the books that I can and I’ve seen videos and whatever else, and it’s like me trying to explain birth to a woman. There’s just certain bits that you can’t do. I was telling him just an example, I was saying to him, like you know, so you have a dry cum now. It’s very different, and when I was explaining that to him it was complete new news to him and he hadn’t been told that. I said this is why you need to…
Simon: I think there’s a very difficult line you shouldn’t cross when you’re talking to anybody before they have things done. If you tell everybody everything in too graphic detail, you’ll frighten the shit out of them. But, they do need to know in gentle terms what things are going to happen and it’s important to always instil in people that it is very varied. So, I had the operation and sailed through it. The other reason I saying I was at a disadvantage is I had private insurance, I had to go private. Which is great, lovely. You’re on your own, there aren’t people farting and coughing in the bed next door keeping you awake and all of that but, there’s a big but. There is no support, you don’t get oncology nurses in private practice, you don’t get that support. Yes I could phone up my mate, I didn’t have to, but I wouldn’t have hesitated because I’ve got his home number anyway if two days afterwards I was worried about what was happening or whatever. Whereas on the NHS you’ve got that easier access. Yes, the private practices always say you can call this hospital number, there’ll be a nurse who’ll say I’ll speak to your surgeon but you can’t do it that quickly.
Peter: Guys hospital was wonderful but it was very drip fed, just as much as you need to know and I’m the sort of person…you know, just give me everything and I’ll just take out of that what I need. But I understand that some people want to be drip fed, they don’t want everything upfront, so that’s a lesson I learnt.
Simon: So I had 3 and a half hours of surgery.
Peter: That’s long!
Simon: That was quick in those days.
Peter: It wasn’t keyhole was it?
Simon: No, it was open. Normally you’re split, as they say from ‘Dan to Beersheba’ but because I’m slim they could do it like a hysterectomy scar.
Peter: I always thought it was just across
Simon: Access to the prostate is not easy. Surgical access, even with a big slash is deep inside, it’s surrounded by a lot of veins so it can be very bloody. Many people needed blood transfusions. It just so happened that my private hospital, they got somebody demonstrating a new bit of kit which was about recycling people’s own blood during the operation. So they thought “oh, we’ll have a go on Steve”. I had about I think a pint of my own blood given back to me, just because they collected it. So I only had 2 and a bit days in, all this nonsense about saving time in hospital with robotic surgery…it’s a day, that’s all it is.
Peter: But the recovery’s a lot easier though isn’t it?
Simon: Yeah, recovery was…you know, I had the catheter in for 10 days. Having a catheter in was brilliant, because I didn’t have to go to the loo anymore.
Peter: My experience was…it was cut a bit short. So it wasn’t quite as much fun.
Simon: But anyway, so I had the catheter out, I expected to be a little bit incontinent because I was told it could be a little bit dry afterwards, that was controllable. I used incontinence pants like everybody does but one thing that I did learn is that Tena for men are the biggest load of crap. They fit because they’re triangular but the absorption is not where your willy is.
Peter: I cut them in half!
Simon: I use women’s ones. Because, I just happened to be wearing some Calvin Klein underwear that had that sort of pouchy bit at the front and a women’s pant fitted in there beautifully. It’s not as absorbent, I was changing my pant quite reasonably. First week, I can’t remember exactly but I do remember my second week after my catheter was coming out thinking “this ain’t getting better”. In fact, it was getting worse. Then at two weeks, I can remember it vividly, I was standing in the bathroom naked shaving and I looked down and there was a pool of pee around me on the floor, and I didn’t know. I became about 96% incontinent and I have to say, and that was a worse blow than being told I’ve got cancer because I was naive enough to think I’m going to be cured of everything anyway. And suddenly it hit me, I was in pretty crap circumstances here. So, being private…
Peter: I cried twice! The first time being diagnosed, the second time when the catheter was out and I was thinking…I don’t know what I was thinking. I had two cups of water and then I thought, hmmm, this is alright. Stood up and it all came out. By the end of the day, my wife had driven me home. Every time we went over a speed bump more came out and it was just too much, I just cried when I got home.
Simon: I didn’t get it, I found it quite difficult because my mate had done the operation, well a bloke I worked with at the time, I anaesthetised for him, I knew him very well. He found it really hard, one of his friends, he has now been made incontinent. For him, I think it was quite a difficult scenario and it changes your relationship. We talked and yes it would be…nobody’s going to be doing anything for a year, or at least 6 months. He found the whole thing really difficult and I found it difficult as well. I didn’t have anybody to talk to and it was him…I mean, nobody really told me about pelvic floor exercises. He didn’t believe in them! There was a trial, and I can’t remember what it was called now….MAPS, ‘Men After Prostate Surgery’ I think it stood for. Scientifically it didn’t prove that doing pelvic floor exercises made a hugely significant difference. It was dependent on how you interpreted the results. Like a lot of science, the people who believed in it could interpret it to support them, the people who didn’t could interpret it and you could get that a little bit with PSA screening. So it was in, perhaps rather gradually, that I thought I should see one of the nurses on the NHS. It was her that A talked to me about incontinence and pelvic floor exercises, it was her that put me in contact with my local support group, it was her that suggested specialist physiotherapist. Now, the advantage of being private was that I could just choose who I wanted to see. And there was (she’s now retired), but there was a lady in Somerset, Taunton. There was a lady there who was a professor of pelvic physiotherapy who dealt a lot with ladies but also men. I went and saw her and I was totally incontinent by then, and I had the most brilliant pelvic floor and what had happened to me (I’m pretty sure, although now it’s true) but I don’t know how much you know about anatomy.
Peter: Not so much, I know where my heart is. I know where my kidneys are!
Simon: What keeps you continent are two things; they’re two sphincters, they’re two circular muscles. One is called your internal sphincter, and that’s for all intents and purposes, part of your prostate. So whatever surgery you have whether it be benign or cancer to your prostate, that’s almost certainly damaged or destroyed. Certainly if you have a prostatectomy it’s removed. Just below that, there is what’s called an external sphincter. So men after prostate surgery, radical surgery anyway, rely entirely on their external sphincter to keep them continent. That can be damaged at the time of surgery, like most muscles that may well with time, it will regrow it will re-strengthen. So that’s why people will say to anybody who’s incontinent, we’re not going to do anything for many months because it may resolve spontaneously and there are many men for who that is absolutely true.
I think I, like some men, was just very unfortunate that I got a puny little external sphincter and that had probably completely gone. It’s been so damaged, it’s never going to work again. So basically, I was like a half full wine bottle, if you’re lying flat then the level of the fluid is below the bottle, so you don’t spill any. Turn it upright and it all comes out and absolutely, typically when I talk to guys…and I’ve talked to a few guys about incontinence, it’s very common for them to say I don’t have so much of a problem at night. Yes, when I get up to go to the loo because I’ve got to go, then I’ll leak a bit on the way to the toilet. It’s all physics, it’s all simple hydraulics. So, to cut a long story short I didn’t get any better and there are things that you can do. You can have slings put in that lift everything up to sort of put a kink in the urethra, they’re quite successful for certain men who’ve got minor problems.
I was advised by my guys about an artificial urinary sphincter. That is a stunning piece of kit. Think of a blood pressure cuff, it goes around your arm. Miniaturise it, stick it around your urethra at the base of your bladder. Fill it with fluid so it’s tightly constricting your urethra, so it’s acting like a sphincter. A tube comes out of that and goes down into a control valve which sits in the scrotum. If I want a wee, I just squeeze my bionic third testicle, it releases the pressure in the cuff and I can wee normally, not a problem. Over the next 2 minutes, it automatically refills as there’s a reservoir somewhere under my abdominal muscles. So it’s all totally implanted, it’s all silicone and it changed me from being 96% incontinent to being now 96% continent. I thought I’d manage my incontinence well, but part of management is setting yourself targets and goals. I’d been invited 6 weeks after my surgery to be involved in a big conference to run up a session. I wanted to do that, so I made sure that was something I was going to do.
3 months after my surgery I’d been invited by a drug company to go and be part of a conference in South Korea. The thought of going somewhere abroad, I’d done a few things since, but never that far away. I thought I’m buggered if I’m going to give this up just because I’m wet. So I went with a suitcase full of pads and my worries were A, if I lost my luggage how do I explain that I need all these women’s sanitary towels. And it was always about how to you manage the problem, and management is the key. I couldn’t have done it without a very supportive wife. I’ve known 3 guys now who are single or are divorced or whatever who have had to go through this on their own. I just don’t know how they’ve done it, not even in the immediate post op phase of who looks after you, but this problem potentially afterwards. Of course, going along with incontinence comes sexual dysfunction and I had that as well. I learnt a lot of things, the first thing I learnt is that you can get an orgasm without an erection. It’s difficult, because the nerves that are damaged by prostate cancer therapy are not sensory nerves. Nobody reports having a numb willy afterwards. The nerves that are involved go down different pathways and those nerves in the main are not damaged.
Peter: They’re not around the prostate?
Simon: I don’t know where they are to be honest but it’s a completely different nervous system.
Peter: I’ve been saying to guys that it’s around the prostate.
Simon: The nervous system that’s involved in producing erection and the nervous system that’s involved in producing orgasm are completely different nervous systems.
Peter: So the ones around the prostate are just for the erection!
Simon: Those are the ones that are potentially the most damaged. Some of the nerves for incontinence are…you’ve got sensory nerves in your body which are sensation, motor nerves which go to muscles and make them work and you’ve got what’s called an autonomic nervous system for autonomic read automatic. Those are the sort of nerves that control blood pressure, breathing and that sort of thing. Those are terribly fine nerves and these are the ones that damage by surgery and prostate therapy. These are the ones which we think involve an orgasm. Nobody really understands, I don’t think, the physiology of an orgasm.
Peter: So would that also mean potentially when you have radiotherapy, you can actually have more damage to those nerves?
Simon: You will get potential damage to those nerves, because it’s a physiological damage rather than a physical damage. It’s less likely that you’re going to have severe sexual dysfunction after radiotherapy than with surgery. Don’t forget though that a lot of men having radiotherapy are also having hormone therapy. So one of the things I learnt quickly is, you need a very understanding partner. My first worries were I suppose, I’d like to be able to have sex again. But I suppose, our sexual relationship as a couple then and even though in the beginning I might not be able to get orgasms, I could make sure my wife does.
You relearn your sex life, totally relearn. But with time, and I’ve learnt lots of things around sexual dysfunction and now one of the things that I would recommend for any man particularly after surgery is the early use of a vacuum pump and I learnt a new phrase ‘penile rehabilitation’. And, the truth is with a lot of these things, it’s bordering the use of sex toys, it’s bordering…well it’s the first time many men have ever seen a vacuum pump or albeit on the back of a magazine that they’re mum couldn’t find under the bed. There’s this sort of dirty little sniggery bit which is very difficult to get away from, with most men and most women. But now, if you were tomorrow having a major lung operation, you would immediately afterwards be getting chest physiotherapy because if your lungs don’t keep expanded, then the air spaces will contract. Well, the penis is exactly the same. If you’re not regularly expanding those blood spaces, they won’t bother after a while. So I have to say, I didn’t get on with it that well but one of the most brilliant things was when I thought I could never have an erection again, at least you saw that your penis was potentially able to do something. The psychological thrill of that was amazing.
Peter: Yes, you can’t put a price on that
Simon: No, whether or not it’s going to happen again naturally is another matter.
Peter: But it gives you hope.
Steve: 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.