Well, I finally opted for HIFU at UCLH and since I have found all your comments so incredibly helpful I felt it was up to me to give an account of my experiences! Covid has certainly made it slightly more complicated particularly with a seven hour round trip to London but my wonderful younger son became the uncomplaining driver. It clearly wasn’t possible to use public transport, indeed this was not allowed. Last Friday was a trip up for all the pre-Op assessment which had to be done in London because of the difficulty of collecting local results. Last Monday was the journey which began at 3 o’clock in the morning to get there for 7 am.I have to say that what was the National Heart Hospital, and now is the Institute of Urology was not designed for patients with urological problems! I Was met by ............. who performed the procedure and took the usual details. He was very reassuring, and showed me the MRI and the target he was aiming for. The procedure is painless, but you have to be incredibly still during it in order to ensure accuracy of the ultrasound beam and the fact that it takes about an hour to do the whole procedure presumably because they are making sure that not all of the energy is passing through the same area of the rectum.One of the rare side-effects is a fistula caused by the energy of the beam, and it was reassuring to know that ........... who is perhaps the most experienced with HIFU In the country, has never had this complication. Next up was my lovely lady anaesthetist who was kind enough to let me know what she was going to use, having spent my whole life working with anaesthetists having been a surgeon. It turned out to be a question of deep sedation rather than traditional anaesthetics with which I was familiar 20 years ago! Anyway recovery was almost instantaneous without any side-effects whatever. Postop ............. was very confident that he had dealt with the small area of malignancy which showed up on the MRI although there is another area of lower malignancy elsewhere in the prostate which doesn’t show up so it cannot be targeted yet and doesnt need anything but watching. Follow-up will be with three monthly PSAs and yearly MRI.
As the catheter is inserted during the anaesthetic with local anaesthetic applied to it which remains active for about six hours the 4 hours car journey home was fine. Despite the long journey it was nice to get back into my own bed rather than stay overnight which was offered.
I have a few suggestions to make which are in no way criticisms, and may reflect the fact that because I was once a surgeon at the hospital, everyone presumes that I know everything. However the amount of information about catheters etc. that an ENT surgeon retains dates back about 50 years to general surgical training when I was never able to see anything down a rigid cystoscope.
There was therefore a certain amount of trial and error joining the various tubes together and deciding on the best strategy for stopping the leg bag from falling off. As far as the taps are concerned I was more familiar with the concept that a tap that is in line with the pipe is flowing and one that it is at 90° is off. So the next morning as I was sitting reading the paper after breakfast our lovely young black Labrador Millie was paying me a great deal of attention. She was indeed trying to inform me that there was a fairly large pool of urine on the tiled kitchen floor and that it was not hers.
Another recommendation is to request or order from Amazon some padded incontinence pants as in my case there was a significant bloody discharge down the side of the catheter which can make a somewhat alarming stain on your trousers. It also helps to steady the end of your penis which reduces the amount of discomfort from movement of the catheter. I noticed from other comments on this site that people were supplied with an antiseptic lignocaine preparation to apply to the tip, but no one I spoke to at the hospital or the practice nurse seem to have heard of this.
Before going any further I cannot praise too highly our local general practice which has been so incredibly supportive and was all prepared for me coming home with a catheter and doing the TWOC next Monday. Life is not easy for them or anyone in the medical profession at the moment with Covid going on.
I have had virtually no problems at all during the day and it is very easy to empty the leg bag by propping your foot on the edge of the loo and opening the bottom tap. The main problem comes at night where I found it very difficult to sleep without night sedation and a lot of painkillers as every time you move your wake up! I haven’t taken any sleeping tablets for about five months but fortunately had some leftover and eventually needed a double dose.
Taking an overview of the whole procedure so far it is really very trivial and if it means it reduces your chance of needing radiotherapy later on it must be worth it, if you are considered a suitable case. If you are reading this please be aware that this is an uncontrolled trial of one, and is almost certainly not going to be the same as your experience although it may be similar. As I said earlier I found it very helpful to read what other people had written and that’s the reason that I am doing this, and also the fact that my wife (also a retired doctor) keeps telling me I should learn when to stop talking. So I am.
Update Day 5
while the proceedure was a piece of cake, the catheter management afterwards was more like rocky road. Firstly I had quite profuse discharge and fresh blood (warned) around the catheter which presumably comes from the seminal vesicles and cant get into the bladder to be washed away with the urine. In my case this created strong irritation of the urethra and especially pain at the tip of the penis where there was no device to stop it moving especially at night. Every turn in bed produced a lot of pain, and awake for 2 hours until I gave in and took more valium (20 mgs most nights). I took 75mgs volterol SR night and morning, 4 hourly panadol and gave up on the codeine as it makes you constipated. NB volterol not provided on NHS, but in my medicine bag. Anyhow no amount of analgesic made the slightest difference to urethritis. On day 4 emailed GP who immediately provided lignocaine gel 5% which when eased up urethra pain stopped in 1 minute and had first night’s sleep. I noted the following comment from the prostate cancer website
‘Ask for some instilagel or hydrocaine, some trusts have stopped using it in catheter care due to adverse reactions. Oddly their protocol says do not use it unless the patient insists ??‘
I did, noone had heard of it, tho it appears the norm for private patients.
Another aid to reduce catheter pain is a sticky pad for the thigh to reduce movement at the tip. Again that would have been a help, and recommended by the prostate cancer site. A bandana at the top of the thigh was the next best thing. Next instalment after TWOC in 2 days time. Cant wait!
Day 7
Well, last 2 nights were hell. Only survived the rwisting catheter at night with 100mgs of Tramadol . Why have I got class A drugs in the house? Well they were 10 years old (so probably less potent) and part of my cruising medicine box allowed as a ships captain and a paid up member of the GMC and college of surgeons. Thank God for expired medicines.
2pm Monday my TWOC. Trial without catheter. For me WOC. There was never going to be a trial of this monster. Removal simple and the minimal pain worth the anticipation of freedom.
What follows
Suddenly you feel euphoria, but its not all over. You have a penis that is not a lovely smooth hosepipe but something like an exhaustpipe from a car wreck. Firstly, lots of congealed exudate from, and still stuck to, the prostate, some bleeding and DO NOT pee standing up. You will spray the entire room. So as I do at sea when there is a swell, do it sitting down, like the ladies. To begin with you may have lost sensation in the urethra so you can only tell whether something has happened by looking in the bowl and return of bladder comfort.
Looking forward to escaping on the boat out to sea. As normal 3 monthly PSAs and another scan next year. Remeber I could have chosen to do nothing!
Edited by member 04 Aug 2020 at 19:28
| Reason: Surgeon's name documented