Firstly I apologise for the length of this text but I wanted to put down as much detail as possible.
I had been visiting a urologist for 10 years for strictures in the urethra for which I have been self dilatating with a catheter for about 5 years - this has improved the urine flow considerably. I have also had several infections of the prostate and thus during those years have had many PSA tests.
However it was a routine Health Check medical that picked up the increase in PSA from 2.6 ng/ml in June 2003 to 4.3 ng/ml in June 2004. My doctor referred me back to the urologist thinking that it would be another infection but the urologist felt a bump during the DRE and sent me for an 11 needle biopsy. This confirmed PCa in 3 of 6 samples from the left and 1 from 5 on the right. Gleason was 3+3 and stage was stated as T2a. I had an MRI scan two days later which was clear.
I did not feel that watchful waiting was for me and I did speak to a proponent of Active Surveillance from the Royal Marsden Hospital in the UK (the UK's top cancer hospital) about this, and he also considered it was not for me. You have to have a certain mental approach to cope with this and I do not believe I have it. After the usual research I initially decided to have a standard RRP but after exchanging e-mails with Mr Chris Eden who has a web site on LRP in the UK, I elected to go for the LRP. My decision was influenced by the fact that the surgeon has performed more LRPs in the UK than anyone else since 2001, nearly 150 of which were in 2004.
The operation was performed on November 17th and I returned home on the 20th November 2004.
When I awoke I did have some pain to the left side of my abdomen but this was swiftly dealt with using morphine and I felt comfortable for the rest of the night although I only dozed intermittently. The next day I was encouraged to get out of bed to clean my teeth and have a shave which was OK but I moved gently! From this time onwards I only used paracetamol for pain relief which was fine. I stopped taking those from day 5 and used no pain killers thereafter.
I ate some soup about 18 hours after the op and scrambled egg about 24 hours after the op with no problems.
As I have Ulcerative Colitis and have been on steroids for 18 years (I am steroid dependent now) my healing is slower than normal and this is one reason I opted for the LRP. The drain stayed in for 2 days and was uncomfortable on removal but not painful.
I did have a problem with constipation despite taking senna and eventually Fybogel but this was all complicated by my UC. I finally managed to have a rather painful bowel movement on the 4th night which was a great relieve.
I kept the catheter in for 14 days due to my slow healing but had no great problems with this other than on one occasion during a walk I started having a pain in the bladder. The bag had slipped and a crease formed blocking the tube, which was creating pressure in the bladder. I managed to get back home by which time urine was leaking from around the tube at the end of my penis but as soon as I realised what had happened and removed the crease, the pressure immediately dropped, flow resumed into the bag and the pain was gone!
The removal of the catheter was again uncomfortable rather than painful and I did not leak at all initially when seated or laying down. I passed 250 ml the first time I went to the toilet which was apparently quite good. I had an ultrasound scan to ensure almost complete evacuation of the bladder and then went home the next day - I stayed over night again due to my slow healing and distance from home. The surgeon wanted to be sure all was well.
I progressed OK but had some leakage on a couple of nights and also whenever I moved suddenly, coughed or walked briskly. This has got better and now I do not wear a pad at all, day or night unless I have been out for a few beers. (I did have an accident after a few beers when walking home with my son recently and had to dive down an alley to discreetly relieve myself but had soggy trousers for the rest of the way home - this was completely my own stupidity and over confidence).
Four weeks after the op I returned for the Histology report on my removed prostate. There was good and not so good news. The Gleason was upgraded to 3+4 (from 3+3) and the staging was T2c (from T2a) as the tumours were in both sides of the prostate. There were multiple focii and the total amount of tumour was about 10% of the prostate. The largest tumour measured 15mm across. The good news was that there 'appeared' (pathologists word) to be negative margins around the specimen and no seminal vesicle involvement. My surgeon did not remove the Lymph Nodes which now that my Gleason grade has been increased I wished he had. He performed nerve sparing on both nerve bundles.
I have not been able to resume normal intercourse yet (9 weeks after the op) but I do have all the sensations and can have an orgasm fairly easily so I am hopeful of some progress over time although this is very frustrating and can be depressing as many sufferers have stated. I have tried Cialis 20 mg but nothing usable has resulted yet.
I went for my first run on 1st January, 6 weeks after the op. Unfortunately 4 runs later I hurt my back and have had to stop the running for the time being. I take a walk most days at a brisk pace.
I am now waiting for my first post op PSA test the results of which will be Feb 11th. Overall I am happy I made the decision to go for the LRP as I am quite sure it is less traumatic than the Open RP. Time will tell whether it is as effective but even my first surgeon who only practices the ORP said that he was sure that the LRP would be the 'Gold Standard' eventually.
I will keep you posted of my progress.
Met with my consultant on Friday 11th February 2005. First Post Op Ultra Sensitive PSA result was 0.016 ng/ml. Surgeon happy with this. Stated that he considers threshold for treatment after a rising trend as 0.20 ng/ml.
Well after trying Cialis tablets a few times without success, I have now tried MUSE this morning and it worked. I administered the Urethral Suppository with an applicator and the effects took about 15 minutes. It burns a bit at first but that was OK. I also had quite a severe ache in the Perineal area and this lasted for several hours. However it has been 16 weeks since the operation and it is the first time we have managed to have sex in a fairly normal way.
The equipment was about 70% of its old self but we managed. In fact I was surprised at how normal it felt. I must say I am a little apprehensive about trying it again as the ache was not nice. But I expect I will. Next time may be at night rather than in the morning so that I can stay laying down and hopefully asleep when the ache is at its worst.
First Post Op PSA was Feb 11th 2005 and 0.016. Second Post Op PSA was May 6th 2005 and was 0.003. Surgeon happy with both.
I am now virtually 100% continent but have a very occasional leak when exercising or stressing / lifting heavy objects, but this is very tiny. I am still technically impotent, but have tried Cialis with no success, MUSE with some success and lately a Vacuum Device which works well but is a little fiddly to remove the rings. I have also noticed some stirrings for the day or two following a Cialis tablet but no full erections yet.
General health pretty good but I have been experiencing hip, knee and back discomfort recently - my GP does not think it related to the PCa, particularly as my PSA results are so low. However it is stopping me running and I am now about to consult an Orthopedic Surgeon on this problem.
9 month post op PSA was 0.004. This is slightly up from the last reading of 0.003 but as my consultant says, this is in the noise level at these low readings, so I am not overly concerned. I am currently experiencing night sweats which is strange but my GP thinks it may be a urine infection. We do not think it is related to PC.
Otherwise I am in good health and planning to run the Great North Run in the UK next month, which is a half marathon. I will be raising money for the Prostate Cance Charity in the UK with my wife and my eldest son.
November 11th 2005 - my fourth post op PSA was 0.003 ng/ml. My surgeon is very happy with that and so am I. It is a year since my operation and my next check will now be in 6 months.
Continence is 100% most of the time but I still occasionally have an involuntary leak. But its not a problem. No spontaneous erections although two recent occasions when there were definite signs in the morning. I have had some liver functions tests come back with high AST results and I am slightly under the weather but ultrasound scans appear to indicate no obvious concerns except for a large cyst on the Liver which the consultant considers to be harmless although he is reserving final judgement until the results of some more detailed blood test have been received.
As I have Ulcerative Colitis and have been on steroids and other drugs for 19 years, it is possible that they are affecting me or another Auto Immune disease has developed, such as Auto Immune Hepatitis or Diabetes. I will keep you informed.
However from a Prostate Cancer viewpoint, I am happy with the ways things have gone so far.
18 months post LRP and my latest PSA check was 0.003, so undetectable which was very good news. My Liver problems seem to be resolving themselves as my AST has now returned to almost normal levels although it has taken the best part of a year. The doctors still do not know what caused it but suspect some kind of virus.
I had a flare up of my Ulcerative Colitis and had to have a colonoscopy earlier than my normal routine check up but by then the additional steroid dosage had taken effect and the biopsies showed nothing untoward. I am now reducing the steroids down to a maintenance dose slowly. I still leak sometimes when exercising or move suddenly and also sometimes when I climax during sex but generally no problem. I have had several spontaneous erections which last only for a minute or two but it is encouraging. Normally I use a Vacuum Erection device and Cialis which works but is not spontaneous so takes the edge off a little. I also have a burning sensation in the urethra when I climax which is apparently possibly due to some nerve endings being disturbed during the surgery, but I can live with that.
So far so good then - however I suffered a prolapsed disc three weeks ago when being over enthusiastic in the garden!
My best wishes to you all.
My latest PSA is less than 0.10 ng/ml. I have moved house from Sussex to Devon and my PSA blood samples are now assayed at Exeter Hospital. Exeter do not do the Ultra Sensitive test which means I cannot compare the latest reading with my past very low readings of 0.003. I may pursue this but will speak to my consultant on the 17th November. I do not want to become paranoid about a slight change to the very low readings which can happen often, so I may accept 0.1 as the norm and be happy when it is below this figure.
I am 99.9% continent, only tiny leaks occasionally under extreme exertion.
My potency varies. I have had some spontaneous erections, usually in the very early hours. They occur more frequently after recent use of the pump, for the next few days and also when I have been taking Cialis. However when I have not used either of these for a week or so spontaneous erections stop. On the 17th November it is two years since my LAP RP, but I feel as if the respective nervous system is making a very slow recovery. One can only hope.
Next check in 6 months.
Latest PSA Test resulted in less than 0.1 which is good of course. I would still like to have the Hyper Sensitive test but my local hospital does not do them.
I have unfortunately developed Peyronies Disease, a bending of the Penis. In my case it is upwards at about 40 degrees from a position about two thirds along the shaft. It also has the effect of shortening the penis. I can still participate in intercourse but it is obviously different now. I have recently been having spontaneous erections 2 1/2 years after my RP which was encouraging. However the Peyronies has suppressed my enthusiasm somewhat.
It could resolve spontaneously apparently but there will probably be a permanent loss in length and girth.
So another hurdle to climb but life goes on.
It seems that many of us have several complications after diagnosis but it could of course be down to advancing age. I am 56, hardly elderly just yet so I'll continue to run, play golf and keep active which I believe helps combat all illnesses.
All the best to you all.
PSA still less than 0.1 and coming up to 4 years since LRP.
Still problems with Erectile disfunction although have found that Viagra works on occasions. ED pump works but I am not keen on it. Have developed Peyronie's disease which is very annoying as it complicates the ED problem especially when using the pump. It is possible that it will resolve itself apparently 30% of cases do but it takes up to 18 months. I have had it for about 6 months. Maybe some improvement by my next PSA check in Feb 2008.
General health OK but with a few issues not related to PCa.
PSA still less than 0.1 which of course is good. However I have an appintment with the Oncologist next week to hopefully discount some hotspots that showed up on a bone scan, as broken and cracked ribs due to a fall off a ladder in November last year. Apparently hot spots can also indicate bone being renewed not just metastatic spread. Next check is due for 1 years time if oncologist is happy next week.
Peyronies disease is still a problem and does not appear to be resolving itself. Still life could be a lot worse.
PSA still less than 0.1. I am currently seeing the oncologist every 6 months as he wants to be sure that the hot spots on the bone scan were all due to my damaged ribs when I fell off a ladder last year. The PSA and all other blood tests indicate that all appears well at the moment but I am grateful although a little surprised by the follow up.
Fully continent but still have the familiar ED issues but otherwise quite well. Ran the Great North Run (Half Marathon) again this year, the 9th in a row and much better than last year but still well down on my best.
Coming up to 4 years since LAP RP (I mistakenly put 4 years in my 2007 report) so I am very satisfied with the procedure.
Next check up April 2009.
Result of my latest PSA test was less than 0.1. Its been four and a half years since my LAP RP.
I still have ED issues but most are related to Peyronies disease rather that the Prostate Cancer.
I am currently trying to come off Prednisolone (a steroid) as I have been on it for 20 years for treating Ulcerative Colitis and it has caused me to develop Osteopenia which is half way to Osteoporosis. I am now taking Azathioprine to assist this process which will take a long time if successful.
So generally I am OK and still running. Next update October 2009.
All the best to everyone.
We have moved back to West Sussex from Devon and now have a new GP.
I have just had a PSA test and it has come back as 0.01. In Devon the hi-sensitivity test was not available so for the last 3 years it has come back as less than 0.1. Prior to moving to Devon the last PSA was 0.004. As they are all probably different labs I am not too worried about the latest hi-sensitivity reading being higher than the last before I moved to Devon. I'll wait until my next one in 6 months time.
It has now been 5 years and 4 months since my LAP and generally all is OK. Still ED issues but no incontinence problems.
All the best to you all.
My PSA is still less than 0.01 which is absolutely fine.
However during the year I experienced a reduction in flow rate and a little stinging when passing water. A trip to my GP resulted in traces of blood in my urine. I was referred to a urologist and he decided the best thing would be to check what was going on under a general. He found that a stone had formed in my bladder round a clip that had come loose in the original operation. He had to break the stone up before he could get it out but flow was restored and the soreness disappeared in a few days. A great relief.
I have had a few leaks recently at night but nothing substantial. I might have to reduce my fluid intake close to bedtime.
ED and Peyronies still problems but they are not going to improve now so I'll have to get used to it.
Overall after six and a half years since my LRP I am doing OK.
I still suffer from ED but have recently been using MUSE again which despite my mild peyronies, is effective.
My PSA is still less than 0.01 which is good and it has been this level since surgery 7.5 years ago.
Since my last update nothing has changed and my PSA tests have all been less than 0.01, the last being at the end of 2012.
ED is a continuing problem but I have now found that using MUSE is the most effective remedy. The application by inserting a urethral suppository is a little uncomfortable and stings for a few minutes and I experience some aching in the groin which is normal but the results are good. I use the 250 dose although I am thinking of increasing this to the 500 dose to make it slightly more effective. I have also developed Peyronies disease which is a bit of a problem as it not only causes curvature of the penis but also effectively reduces the length.
Although Muse is not recommended for men with this condition, the urologist has said that with my mild Peyronies it should be ok and it is.
Continence continues to be virtually 100% with the occasional leak when I am performing some physical tasks such as lifting etc in the garden but overall is no problem at all.
I do not use the vacuum pump any more as Muse is easier to use and I find it more natural as does my wife.
It is now nearly 9 years since my diagnosis and laparoscopic radical prostatectomy and for me this has been the best solution even with the ED issues.
My current PSA is less than 0.01.
I still have an occasional leak but only when lifting or sometimes when I am on a long walk, but its very small and infrequent. ED is a continuing problem but I have varied the remedies and lately I have found that Viagra works very well sometimes and works well enough at others. MUSE also works well but I have a very sensitive urethra apparently and it stings quite a lot initially. However it works every time. I have not used the pump for several years as we don't find it spontaneous and it is not so effective now that I have slight Peyronies disease.
I am now retired from full time work but my physical activity has increased as I am not desk bound and there is plenty to do on my house and with my grandchildren.
It will be 10 years in November since I had my prostate removed and I still believe it was the best option for me.
PSA is still less than 0.01 10 years after laparoscopic surgery which I am very pleased with. ED still an issue but its no worse. MUSE still works but I find it stings the urethra.
Otherwise nothing to report except a recent hernia operation which has left me with a much larger scar than the prostatectomy!
It will be 12 years in November since my LRP. My PSA has remained at virtually undetectable levels since a few months after the surgery. (It usually takes a few months to reach its lowest level).
I am normally fully continent but sometimes I have a very small leak when performing heavy or prolonged physical activity such as digging, laying concrete, lifting etc but this is rare.
ED is an on-going issue probably exacerbated with age, I am now 65. I have tried many methods including tablets, vacuum pump and MUSE with varying success but none were entirely satisfactory so I will soon be trying Caverject injections.
MUSE works but I find it burns or stings the urethra which is apparently a common complaint.
I still believe surgery was the best solution for me.
My latest PSA was less than 0.01 which is unchanged for more than 10 years.
This year I attended an ED clinic and was shown how to administer the Caverject injections.
I tried this for 4 injections and although it works pretty well I decided that it was not for me. I found that I was nervous and apprehensive before injecting myself although I managed it OK.
I have continued to use the Muse system and since I was recommended to increase the dose to 500mg it works as well as the injections without the anxiety. It can sometimes cause a burning or stinging sensation in the urethra but if careful it's fine.
Caverject is probably fine for some men and I may go back to it if and when the Muse system is less effective as it is almost guaranteed to work and the dose can be incrementally increased in the applicator.
Apart from the ongoing ED and very occasional incidents of stress incontinence when working and sometimes a drip or two at night all is OK.
Richard's e-mail address is: rbaindiy AT gmail.com (replace "AT" with "@")