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John W and Sarah live in England. He was 54 when he was diagnosed in December, 2012. His initial PSA was 6.90 ng/ml, his Gleason Score was 7a, and he was staged T2c. His choice of treatment was Surgery (Manual Laparoscopic Prostatectomy ). Here is his story.

I was diagnosed in December 2012 as a result of a routine PSA test.

This was followed up by a needle biopsy that revealed cancer in 25% of one core of twelve sampled. The Gleason score was 3+4=7. I also had an MRI scan soon after this suggested that the cancer was prostate confined and had not spread.

I could have opted for any treatment option but decided on laparoscopic surgery. As I now knew that problems of tenderness in my abdomen over a few years were probably undiagnosed prostatitis (or even early cancer) it didn't seem to make sense to subject a tender prostate to radiotherapy. I also liked the idea of dealing with the cancer by removing the prostate, which at that point seemed like it might be a total solution.

I was recommended laparoscopic surgery and when I talked to the surgeon (who had performed over 150 such procedures) he convinced me that it was a better option in terms of recovery than open surgery, with at least as good outcomes.

Unfortunately there was a wait from January 2013 to April 2013 for NHS surgery as there were only two surgeons in my area trained to perform manual laparoscopic surgery and both had to be involved in each operation.

The operation itself went well with little pain afterwards. However I did have problems when the catheter was removed 7 days after surgery. On returning home the same day the joint in the urethra started to leak urine into my abdomen, which was excruciatingly painful. I was readmitted to hospital and had a catheter put back in for another 15 days. This time when it was removed, following a cystogram to test for leaks, all was well.

Incontinence initially got me down a bit. Reading other peoples experiences reassured me though. Roughly 10 weeks on I'm now down from three to one incontinence pad a day, dry at night and improving well. I think the pelvic floor exercises help but it takes some self-discipline to do them regularly. I also tried a slightly weird tip picked up from a web forum. This was going naked from the waist down for a couple of hours in the afternoon and using a disposable cup to catch any drips. It may sound unusual, but although I only did it once I'm sure it helped me identify my pelvic muscles. Best to stick to your upstairs rooms and do be discrete if you try this though!

Erectile dysfunction - it's a bit early to say but I am optimistic. I was put on 2 Cialis tablets a week for 6 weeks for rehab purposes only. One day I found the beginnings of an erection, my curiosity got the better of me and one thing led to another and I ended up with an almost normal erection. It was however a bit painful and for a few weeks after I suffered random stabbing penile pains. In retrospect it didn't seem such a good idea to experiment so soon!

In early June I had my follow up appointment with my surgeon. Good news was that my PSA level was undetectable. However the post operational biopsy of the prostate revealed that the tumour had in fact extended to the margin of the prostate and possibly beyond (extra capsular extension). So the chances of a future recurrence are much higher than I'd originally hoped. I will be monitored every 3 months and will have radiotherapy if there is evidence of the cancer coming back.

However as of late June 2013 I am actually feeling fitter than I have for some years. I have gone back to my office job. I'm obviously hoping this continues and will update after my next review.


September 2013

Five months after surgery, PSA still undetectable.

Incontinence has been improving slowly. I've been on 1 level one pad a day for a long time now, which is fine.

The erectile dysfunction is a bit disappointing. I'm now taking Cialis on prescription (I'm allowed 4 a month on the NHS apparently!). I get a moderate reaction from this and I don't feel inclined to try other options at the moment.

I now realise that the cancer must have been growing for a number of years, but at the moment I'm clear and hopefully that's how it will stay.


July 2014

It is now 15 months since my prostatectomy. My PSA remains undetectable. I have always had some problems with continence and worn one level 1 pad a day to catch the "dribbles". I'm pleased to say that I'm gradually "weaning" myself off these, starting on days when I'm not expecting to go out. I'm also experiencing some slight improvement with the sexual side of things. Even with Cialis things have been fairly disappointing up to now, but I'm experiencing a slight improvement which is encouraging. My partner has been very understanding, but leaking of urine on occasions during sexual activity is a frustration for us both. All things considered, so far so good!


August 2015

It's now over two years since my prostatectomy. PSA still undetectable. My bladder control is fairly good no continence pads but I often have a drip or two when tired. My erectile dysfunction was a bit of a disappointment but it suddenly started to improve and now with Cialis it's about the same as its was pre-op. Ok sexual function is not quite the same but it's fine.

Having positive margins post surgery was a big concern but at this point everything is going well.


October 2016

All still well. My consultant believes that despite "surgical margins" following the operation, things are now looking good three years on and the risk is now relatively low. Continence is generally good with just the occasional spot. Sexual function with Cialis is variable.


November 2017

PSA test this week shows still undetectable - great news. Not on any medication. I was switched from Cialis to Viagra because it's cheaper for NHS. The two medications work in slightly differing ways so just need to be aware of this. Still prone to occasional minor incontinence, especially when tired or in urgent need of a toilet visit. I think this is something to work on.

John's e-mail address is: johnandsarahwest AT hotmail.co.uk (replace "AT" with "@")