Currently awaiting surgery 8th January 2013 provided by the National Health Service. I've done a lot of research and have agreed with my consultant's opinion that surgery is a reasonable option for me. Although I have a low Gleason and PSA, I had 8/12 positive biopsy cores. In his opinion, Active Surveillance is not a good choice; my last PSA, about 4 years ago was 4. It's on the march, although slowly, and I might as well bite the bullet. The Yananow site has been a great source of comfort and reassurance, so I'll try and keep updates frequent and accurate.
Just an update. I've been told that because I have elected for robotic surgery rather than conventional laparoscopic surgery, the hospital can't be too specific about the date, and reckon it will be around 15th January 2013. The surgeon who is to perform the prostatectomy, while experienced in non-robotic operations, has not done many robotic ones, and currently performs them with a mentor surgeon with more experience. I'm quite cool about this. I get 2 surgeons for the price of one, and am willing to wait a little while to get what I want.
I have told my manager and the HR manager at work. But not the general staff. Yet. I will tell them just before I take the time off to have have the operation.
I have two brothers, both younger than me, and I told them. This is because of the slightly higher risk of prostate cancer that men have if one of their siblings have it. I didn't agonize about telling them, it seemed to me to be something I was obliged to do.
We haven't yet told the children and friends. That's a job for after Christmas. As far as my wife and I are concerned, this will be an exercise in telling it like it is. Having done a lot of research into prostate cancer itself and the surrounding medical and non-medical issues, we feel that we have a good handle on it. There will probably be tough times ahead, but we think we're ready.
Well, suddenly the operation is around the corner. Today (Friday) I went to Clatterbridge Hospital to meet with my surgeon, Mr Manal Kumar, for a pre-operation briefing. He went through what he intended to do as regards the operation. His manner was confident and efficient,and I have no qualms about his competence. By Tuesday, it's a good idea to Google your surgeon's name. It can give you some idea of the type of experience that they have as well as their involvement in areas of specialisation. He said that he was going to perform a unilateral nerve-sparing operation, as the cancer is located mainly on one side of my prostate. This does increase somewhat the chances of long-term erectile dysfunction, but I'm of the opinion that is we're going through this operation we must remember that the number 1 goal is to control the cancer. Anything else is secondary. Once the cancer is controlled, the number one priority is the the continence. Then the ED.
Also met the specialist nurse practitioner, a lovely lady called Beverley Rogers, who probably wrote the manual good bedside manners. What has struck me through my experience so far is that everyone with no exceptions has not only treated me with kindness and consideration but has also been very up front and accurate with their information. It has become common for people to complain about the NHS. Maybe I'm very fortunate, but if my experiences are typical of the NHS (and I have no reason to think otherwise) then we don't have to worry too much. I asked about who would be dealing with the continence issues and the penile rehabilitation. This is kept with the surgeon, which makes sense. The news that the hospital has a penile rehabilitation clinic was also good news as I was somewhat apprehensive that I would be left on my own somewhat to deal with the problems.
The timescale for incontinence is quite aggressive. Nothing is done for up to three months, in order for things to settle down. Mr Kumar said that some 80% of his patients were continent by then. By fully continent he means either completely dry or using a light pad for stress leakage. If after three months, things have not cleared up, then further action is taken. This compared very favourably against the experiences I have heard about on the web.
Regular dosage with Viagra is part of their regime also. I am persuaded by my research that regular low dosages of this and similar drugs post prostectomy are a useful method of treatment for erectile dysfunction. The thing to remember about the erectile dysfunction and the incontinence is that they are problems that take time to fix. There are no instant solutions.
After the meeting, off to Arrowe Park to meet with the anaesthetist, Dr Sadera. Again, all staff were polite and helpful and Dr Sadera didn't keep me waiting at all, even though I had no appointment. A few questions about my general health, a description of the procedure in quite some detail and a summary of what could go wrong. I told him that he was failing to sell the operation to me! A charming man, whose unassuming manner gave me confidence that I was in capable hands.
And that's it. A couple of days to get my things together.
Oh, and one other thing. I am the first patient to have the da Vinci system of robot assisted laparoscopic prostatectomy in this hospital. I assume that I get a medal. Also made enquiries about a video of the operation. Apparently this is possible. What a great way to gross out the children. And grandchildren. And anyone for that matter :-)
Well, its now the 17th January 2013. I woke up around 1800 on the 15th, having spent quite some time in recovery. I vaguely remember being wheeled about and people asking me if I was awake. Mr. Kumar came round later and had some good news for me. Because the prostate, when examined, was superficially of a normal size and appearance, a decision was made to spare the nerves on both sides, so my chances of regaining continence and erectile function are as good as they're going to get. Not a certainty, of course, as I've learnt in the experience, very little is certain. But I feel very optimistic about the future and feel that I have made a good decision at a good point in time.
And then it's up to Ward 14 at Arrowe Park Hospital for a couple of days or so before I go home. They don't like to keep people in unnecessarily, which suits me.
And now a word about the care. I have run out of superlatives to describe the nursing team. That includes everyone from the ward nurses to the cleaners. All were compassionate, caring and competent (there were some people much more ill than me on the ward). This is the first major operation I have had in my life. The whole thing has been organised from beginning to end by the UK National Health Service. The total bill to me so far? Nil. Nada. Zilch. All the incontinence equipment is delivered to me and treatment for erectile dysfunction, if I need it, is provided by the NHS plus I get home visits by a district nurse. I feel very fortunate to be one of the National Health Service's customers.
It's my belief that even if I was a millionaire, I would not be able to buy more competent and caring treatment anywhere. Right the way through from the initial blood test organised by my GP, through the biopsy and diagnosis, through the operation and aftercare, I have at all times been kept informed, cared for with competence and kindness and received treatment of extremely high standards. My thanks go to all of the extended team - what could have been a stressful experience was made much easier because of their willingness to go the extra mile.
On the morning of the 16th, my surgical drain was removed. Others who have reported this describe it as a weird feeling. Yup, that's about it. It doesn't hurt at all...just weird for about 3 seconds, then it's out.
Oh, I forgot to mention the stockings. As part of the defence against DVT, special stockings are worn for 4 weeks after the operation. These are not sexy at all, but then I'm not feeling particularly sexy either, so that's all right. Also an injection of anti-clotting agents via self-administered injection. This was much easier that I thought, if I have to move onto Caverject for ED, I don't think I'll have any problems there.
Felt OK Wednesday day, but the pain got a bit worse in the afternoon, so I was offered another night , which I took, as I was feeling weak. The main source of discomfort (for that's what it is) is the actual wound sites (I have six spread out across my abdomen) and gas. When you are subjected to da Vinci surgery, your abdomen is pumped up with carbon dioxide to give working space and I believe also to reduce bleeding by providing back-pressure against the internal blood pressure. Unfortunately, some remains after the operation, and boy, is it uncomfortable! But it gradually dissipates, exercise being useful here. By that, I mean walking, in my case, a very definite old man's shuffle. 'Baby steps, baby steps' I muttered to myself as I walked up and down the corridors. The actual site where the prostate was appears to be without pain, though the area behind my testicles (the perineum, apparently) is slightly tender. Put it this way, I would not like to ride any bike just yet.
Finally home on the 17th. Registrar checked me out and pronounced me fit to go after feeling my abdomen , which was still feeling bloated. The hospital trained me in catheter care and gave me painkillers, high-energy drinks and laxatives. My catheter supplies had been delivered to my house. The district nurse is due to contact me on the 18th. My wife came and picked me up, then off home back to my bed. There is something reassuring about your own bed, however good the hospital is.
Managed to pass some wind in the afternoon which was a relief. One thing with this disease, you quickly lose any inhibitions on the subjects of incontinence, erectile dysfunction, urine and a lot of other things!
All in all, I feel very good, with little pain, easily controlled with paracetamol and/or Tramadol. Catheter out in 2 weeks yay!
Things continue to improve in leaps and bounds after the catheter removal at two weeks. Back at work, now, it's good to have some direction back in my life and it gets me out of the house.
Had my first proper drink post op. A pint of extra-cold Guinness. When I tasted that drink and looked into the glass, I realised two things. Firstly, there probably is a God. And secondly, he's probably working in the Guinness brewery in Dublin.
Continence is still good. Just a drop when I lift something substantial, but no problems standing/sitting/lying down. The physical changes are there. No longer is there a pause after I pull out the fire hose before it starts. Now I haul it out and let rip. Cool! I'm pissing like a horse!
On another note, I did feel that the old trouser snake had shortened a bit. [This is a controversial issue - see some notes and studies here Loss of Size] Some people have a theory that this is because of the shortening of the urethra. I'm not inclined to believe this, as the anatomical structures don't seem to agree with the theory. What it possibly could be is a combination of nerve damage and irritation to the urethra by the catheter. This has caused the muscular tissue in the body of the penis to contract. And that was the case with me while the catheter was in. At the moment this seems to have largely sorted itself out and length etc seem to be little different to pre-op dimensions. Of course, the erection dimensions are the important ones. OK, I know it's slightly ridiculous, but it's a guy thing. The first thing I did when I woke up from the anaesthetic was to peer under the bedsheet to check all was OK down there. Once I has established that all looked reasonable, I kicked off the morphine and went back to sleep. Women will never understand penis pride in all its ridiculous glory.
One thing I have noticed is that US patients seem to have their catheters in for about a week generally, while here in the UK it seems to be a two-week stay.
So, on a cold, rainy, Tuesday night, I'm sitting in JD Wetherspoons, (for non-Brits, a national UK pub chain where you can get ice cold Guinness for £2.69 per pint), typing this on my Nexus, having had a good dinner and a pint of Guinness. Does life get any better than this?
Things progress well. I attended my six week assessment at Clatterbridge with my consultant Mr Kumar. My 6-week PSA blood test was 0.02 which is good. My post-operative biopsy was reasonably good - I was regraded to a 3/4 and some of the cancer had got pretty near to the prostate wall. Overall, Mr Kumar was happy with the result and booked me in for another 6-week review and another PSA. Also got a prescription for Cialis, with instructions to take half a tablet twice a week until my appointment with the Penile Rehabilitation clinic at Arrowe Park in just over two weeks, where I will be introduced to VEDs (aka penis pumps) and the like. Watch this space LOL! Mr Kumar works on a basis of restoring potency within 6 months to 1 year, so aspect of my recovery is looking good. Some people who have had this treatment seem to be left to their own devices after the operation. This certainly doesn't seem to be the case here - they certainly don't like to leave their patients in the lurch!
Continence continues to be very good - normal activity I am 100% continent. Getting up from chairs, coughing and sneezing don't cause any leakage whatsoever. However, I've restarted my running and have noticed that I leak a little (something around 20ml, I guess) although I'm not aware of it. I'm pretty hopeful that this will resolve itself quite quickly as I ease back into fitness.
Erectile dysfunction is pretty much 90%, though there are promising signs - engorgement showing that there is blood flow. Hopefully the Cialis will help kick-start things, though I have to admit that getting wood is not really the number one priority in my life. If I had to choose between being dry and being potent, I'd rather have the dry. But there's no harm in going for the both of them :) Libido is still there, and orgasm, while different, is as satisfying as it was pre-op. And no mess!
All in all, I'm feeling quite good. I have no pain or discomfort - when I'm running it feels a little tight around my abdomen but that will go soon, I think. I'm not depressed as far as I know and the regular PSA tests don't faze me. Quite quickly, my new plumbing arrangements have come to feel normal - I do think my bladder can't hold as much as before but that will probably sort itself out. It's actually quite nice to be able to go to a urinal, pull out the old trouser snake and let rip like a twenty-year-old :)
Three months and counting . . . my second PSA test post prostatectomy has come back at 0.01 which is of course good news. Though I'm under no illusions that my prostate cancer will not come back. My chances, like most people at this age are pretty good. Anyway, on with the progress. General health is good and my mood is positive. I have got back to some running and have entered the Mersey Tunnel 10K in June, an event I've done 3 or 4 times now. Continence is 100% - I did have a slight leak when starting back with the running but that sorted itself quite quickly as I got fitter again. Erectile function is not bad - I would say up to about 50% though it's difficult to quantify this objectively. I'm on 10mg Cialis twice a week with a vacuum pump which seems to help. All prescribed and provided by the NHS, which is a bit of a relief, as Cialis seems to be about £10 per tablet on the web. Tried MUSE a few times but this didn't seem to work at all for me apart from giving me a slight engorgement and some pain in the urethra. Nocturnal erections are coming back, too. Orgasms are good and satisfying, though they are different from before the op. I seem to take longer to reach orgasm, but that's not a bad thing, I guess. Libido is still there, too :)
The message for anyone facing a prostatectomy is this - it certainly gives you a bit of a jolt. But there is life, and it's a good one, afterwards and many of your worst fears probably won't come to pass. One of the best things that happened was that someone who was facing the operation called me, having seen my story in a local newspaper. I was able to help him by talking things through with him and I like to think I made it a bit easier.
One thing I have thought about is telling people. I decided that I was going to be upfront and tell anyone who I knew who could be at risk. Not in an evangelistic way, but rather just tell them about prostate cancer and the PSA test. People are quite happy to say that they have had a broken leg or even a heart attack but once it involves the male genitals an awkwardness seems to descend on the conversation. Which is odd, because in general, people have fewer problems with breast cancer, even organising 5 and 10K runs and other events. Well, I'm quite unabashed about the subject matter and happy to spread the word :)
Now at 5 months post op, and have just had another review. My last PSA was "below 0.01", it turns out, so my next review appointment has been scheduled for December with a PSA test two weeks before that. Continence is still very good. Only the occasional slight leak when I run, easily dealt with by ensuring that my bladder is as empty as possible before I start out, and stopping whenever I feel the slightest urge. Happily I'm running in a fairly rural environment, so it's quite easy to do this. My bladder capacity, which was originally reduced somewhat, seems to have recovered. I have no aches, pains etc at or near the oeration site.
Erections are returning slowly but steadily. I have had a few nocturnal erections recently which have been of decent quality. The NHS has offered various therapies; MUSE, vacuum pump, Cialis and Aprostadil. MUSE soesn't work too well for me. I tried it a few times, and all I got was an odd burning sensation in mu urethra and a slight engorgement. The vacuum pump is reasonably effective at creating an odd sort of erection. But it's a lot of fiddling about. Cialis seems to have some positive effects but these are difficult to quantify accurately. I don't get too many side effects other than slight indigestion. Although I have been offered Alprostadil, I have declined so far. I'm not squeamish about sticking needles into my penis. It's just that I really can't be arsed to mess about too much. There are a lot of things in life other than being able to have an erection. Any many of them are inherently more interesting at my time of life. So a regime of keeping fit (i.e. being able to run 10K in less than 50 mins), keeping an eye on my diet and weight and having a positive attitude to life generally seems to me to be a good way to deal with the issues of erectile function in a non-invasive way. If all comes back, and the signs are that it is on the way, that's good. But if my erection ability doesn't return, then well, I'm not really going to be that disappointed. It really doesn't matter a huge amount to me personally any more. If I was twenty years old, no doubt I would have a different attitude. But here at sixty, it's more fun being a grandad :)
Now the thing is, I have got to 11 months after the prostatectomy and I have just been for a PSA test and checkup. And all was fine, with a PSA of 0 01. It's funny, but I wasn't apprehensive even though I had to wait 2 weeks between the test and the result. Though I must admit there was a bit of a spring in my step as I left the hospital. One more appointment in March, then I will be discharged to the care of my GP. This will essentially be a yearly PSA test, and hardly a burden.
On the side effects front, things are good. As you'll probably have read, I did not have any continence problems to speak of. ED, while present after the operation, wasn't a terribly significant problem as I was expecting it and knew that more than likely I would recover. And that has been the case. A slow but steady improvement to the point where I'm back to about 70 or 80 percent of my pre - op ability. I did use the vacuum pump provided by the NHS a couple of times, but I quickly tired of that. I declined injections, not that I'm squeamish or a wimp, but I wanted to see how well I progressed. 10mg of Cialis twice a week has possibly helped, but it's quite difficult to work out what part, if any, that it's played in my recovery.
The message here for others who are faced with the same journey? Firstly, it's not as bad as I thought it was going to be. You meet a lot of kind people. If you're lucky, and I was, you are taken care of by a competent and efficient health care system. And, last of all, there is life after prostate cancer. I've spent a little time updating my story in the hope that it will give hope to others. I have already been able to help at least one other person facing a similar situation. I will continue to update my story to reinforce the message that for most men, a diagnosis of prostate cancer need be nothing more than a hiccup in the flow of their lives. That's not to say it was easy. Quite the contrary. I had my share of dark times. But. You will get through it and the sun will shine again.
Did I make the right decisions? I can only say that if I had to go through it again, I don't think that I would change any aspect of my treatment. Yes, it is possible that had I done nothing, then I would have still got into my eighties before my prostate cancer caused any significant issues. But the anxiety would have been a nagging monkey on my back. I prefer to carry as few monkeys as possible. One point to stress here is that although I researched treatment options thoroughly, I was always trying to make te decision that was best for me. The fact that things have worked out so far for me does not necessarily mean that my choices are the best options for you.
For those of you who are about to tread the same road as me - you have my best wishes and my email address.
And I must not forget to mention the help that YANANOW has given. The point, for me, is that it's frequented by people who really know and understand what the issues are and are not afraid to discuss them openly and sometimes with incredible candour and humour. I am grateful to you all. My thanks, also, to the web site team who give up their time to provide such a useful service.
Finally, can I mention the Donate button? Running a service like this does cost money and I for one welcomed for the opportunity to help others in a small way by making a contribution to those costs.
A Merry Christmas to you all.
An update because I've reached a milestone of sorts. 14 months after my RALP and my final review with the Urology department at Arrowe Park Hospital. The latest PSA test is 0.01, which is the same as all the others since the operation. Now I get handed back to my GP and go to 6-monthly PSA tests. All is good. Continence has continued at 100% even when running a 10K. So that's good. I have some ED, but there is a slow and steady improvement. But to be honest, I'm just not that anxious. I somehow welcome the decline in sexual appetite anyway. Someone once said that having testicles was like being chained to the village idiot. Guys, you all know what that means LOL.
Orgasms are different, somehow sharper and more 'whole body'. And dry, of course. Which is convenient, to say the least :).
I still think that I made the right decision and would not change any part of my treatment. I consider myself lucky that I am a citizen of a country that has a comprehensive and well organised health care system, free at the point of delivery. I have not had to pay a penny. Even the Cialis that forms part of my post-operative treatment is free to me.
I'll keep coming back to provide updates. (I want the gold bar!). As always, if there's anyone who wants to talk about things, I'm happy to receive emails and will do my best to inform.
All in all, life is good . . .
Well, no news is goods news? My PSA continues to flatline. I have no problems that are significant some 17 months after my prostatectomy. I remain 100% continent, and have been almost from day 1. Maybe it's my imagination but maybe my bladder isn't quite as capacious as it used to be. But then I do like my tea. Yorkshire, of course . . . ED is not an issue. Now that I'm over 60, I'm actually quite glad that the old drives are simmering down a bit. A pretty girl will always be a pretty girl; that hasn't changed. There's a certain feeling of detachment from the basic instincts that used to influence me.
I'm under the care of my GP, but that's very much a hands off relationship. I organise my own blood tests - currently every 6 months, but I'll extend that to 12 months once I get to my 3 year anniversary. The surgery has got used to me asking for the actual score. They start off by saying that it's normal. Ah, but normal is a relative term as far as PSA is concerned :)
One thing that getting prostate cancer taught me was that like everyone else, I have a limited time here, and it's starting to run out, even if I remain 100% healthy. And it does concentrate the mind wonderfully to have someone tell you that you have cancer. What I'm trying to say is that actually, for me, there was a positive side to compensate for the negatives. I'm now no longer as scared of dying as I was before the prostate cancer diagnosis.
There's not only life after prostate cancer. There can be good life after prostate cancer.
Just checking in to provide proof that for a significant part of the prostate cancer population, there is light at the end of the tunnel. When recovery is well under way and all the signs look good (last PSA 0.01), it's all too easy to leave the updates and carry on with your life. But it's the mundane details of a continuing life that are reassuring, I guess, so I'll keep on doing that. I don't need a bucket list urgently, but I made one anyway - it's never too soon to start. So - seen Jethro Tull live - doing Thick as a Brick! Yay! Also Rick Wakeman live, doing one of my favourite prog-rock albums, Journey to the Centre of the Earth! Double yay! Saw 'I'm Sorry I haven't a Clue' at the Liverpool Empire and laughed till I cried with Sandy Toksvig, Barry Cryer, Jeremy Hardy, Graeme garden and Tim Brooke-Taylor. Been on a microlight flight and in a month or so going on the Airkix skydiving system in Manchester. All trivial things as far as the world goes, but they bring this message. Although life may seem dark to you if you're starting on the road I've been on for over 2 years, there are lots of things that will bring light back to you. And Yananow was an important part of my recovery; if it's helped you, then contribute your story, whether it's good or bad. I took comfort from the knowledge that what I was reading was the real McCoy. It's all very well listening to a doctor who specialises in the treatment of prostate cancer. What I found equally valuable was the stories of men who who actually had the treatment and wrote about it. I hope to be rambling on here on Yananow for many years yet :)
Coming up to 3 years, now. PSA still at rock bottom. At three years, it's quite likely that I'll eventually die of something else than prostate cancer. Actually, as I ride a motorcycle, it's arguably much more likely that I'll die in an accident than I'll die of prostate cancer. And I hop on my bike without caring much about the risk. Life continues well. Slight ED but that's easily sorted with Cialis provided FOC by the National Health Service. Yearly PSA tests which I arrange myself. I hope to be checking in with mundane news for many years to come. To point out that a good prognosis like mine is actually quite likely for most people. Yes, I know I'm not out of the woods completely. Are you ever? See you again in a year, hopefully. ;-)
Let's Talk about Sex (Explicit content)
Let's be clear about this. When you have a prostatectomy, the thing that you're probably going to be most worried about . . . is . . . Am I ever going to get a hard-on again? Guys, if you're honest, one of the best feelings in the world is a the feeling of a good old stiffy. I feel no embarrassment about admitting it. After all, 3 million or so years of evolution make us what we are, and we don't squash instinctual behaviour easily, if at all.
Well the good new is for some of us, we can go on to have good (even great) sex after a radical prostatectomy (RP), If course, there's no squirting of the gentleman's gel any more, which can actually be more convenient and means you don't have to ask your partner whether he/she spits or swallows. In my case, the erections aren't quite the diamond-cutters they could often be, but they are still plenty more than sufficient. It takes longer to get one. But nearly always a 5-minute session of oral play will get it to a level where penetration is easily achievable. Once there, I find that losing my erection never happens - on the contrary I have levels of control and endurance that I didn't have before my RP. It takes longer to reach orgasm and I find that I can hover on the edge of orgasm quite easily without losing my erection or going over the top. Much to the delight of may partner. While the orgasm is somehow sharper and more intense, the refractory period seems to be shorter - in other words, I'm ready for round 2 in quite a short time.
So how does this happen? There are five main factors as far as I'm concerned. Note that what I'm talking about here is my personal opinion. You mileage may, and probably will, vary.
First, luck. Some people lose sexual function more than others. There's really no way that I can see how you can measure that in advance of an RP. I was lucky, I guess.
Second, the type of RP that you have. Although there's no particular evidence yet that a bilateral nerve-sparing robotic RP like mine is better at preserving sexual function than a traditional RP, it seems to me that there could be an advantage in the precision available to the surgeon.
Third, keeping fit. It helps recovery and a basic optimism. I run 6km per day. Every day without fail. That helps keep my BMI down to around 21-22.
Fourth, patience and a positive attitude. Let's be honest. You will fail to rise to the occasion occasionally. But with an understanding partner, that won't matter. Learn from what happens and don't be afraid to try new techniques. For me, It has taken about 3 years to recover from my RP. And I'm still improving. But I can confidently say that I'm having some of the best sex of my life.
Fifth and finally, remember that if you don't use it, you'll lose it. I've been fortunate with a partner who really enjoys sex. The more you do it, the better you get at it. Don't be afraid of taking advantage of drugs - in my case 10mg of Cialis (which, curiously, I get FOC on the UK National Health Service) seems to help. But I don't actually know whether it's the drug or the placebo effect. Either way, it's the final result that matters.
So, all in all, things are looking good. Just had my PA test at 0.05 which is an equivalent zero. I'm coming up to 4 years post-RP, and feeling good.
So, why did I post this? Because I hope it answers one of the fundamental questions about a RP. That it doesn't necessarily mean the end of your sex life. But your concerns about this are not necessarily ones that you might feel comfortable about discussing even with those close to you.
Good luck to all of you. I hope to be posting many more candid accounts of life post-RP in the future :) If you want to contact me, you are welcome to email me.
Simon's e-mail address is: simonboulton AT gmail.com (replace "AT" with "@")