Treatment Experiencies

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Hi. Just an update on my treatment, 5 weeks post OP,
I had RALP on 29th september all went well and the surgeon said there were negative margins, follow up appointment on 21st November so get results then, I had catheter out on 24th October approx 3.5 weeks after the OP, well they warn you about incontinence but they do not tell you what it will be like, constant peeing all the time, I cannot stand it, I know it is only 2 weeks since the catheter was taken out but I would hope to see some kind of improvement, also what they don't tell you is the cost of the pads they are expensive, all I have to say to anybody thinking about having this surgery is think seriously about it and make sure you know all about what the side effects will be like don't let the doctors fob you off, find out everything as I can assure you peeing in your pants all the time aint nice, I know a lot of people have said on this site that they were dry almost straight away, all I have to say is that they have been extremely lucky, just telling of my experience,

Paul

in regards to the incontinence I too felt the same as you at that stage. Slowly, little by little I have improved to the point of now being almost dry most days. Still get leaks at times but it is much better than before. At night i am totally dry. To be honest I never really did PFE at all / correctly at first and only when I really started doing them regularly/correctly did I start to improve. I had the op on June 17th so just over 4 months. When I started this process I set myself a 6 month deadline to get back to normal so hopefully I can do this. Good luck and try and stay positive.

Hi Paul
I am in a very similar position as you, not sure whether I have negative or positive margins, as am having a blood test for my PSA levels on 23 November and seeing my specialist on 28 November for the results.
My incontinence really got me down at first but I can see a gradual improvement, I go through the night completely dry, but use a lightweight pad, during the day it is annoying especially when i can go over three hours without feeling the need to pass water and then after going I will suddenly drip. Really frustrating.
I do use the exercises everyday, and my doctor said that if I can stop peeing mid flow then it is all working and there is no permanent incontinent problem, although it doesn't seem that way when I leak. From what others have said it is a long recovery time and we are both only into weeks after catheter removal so we both must be patient.
Yes the pads are bloody expensive but a small price to pay if it means I don't have cancer anymore. I am back driving my car and going out socially and being able to have the odd glass of red wine although white wine makes my incontinence worse, red seem ok.
Just remember it will get better
All the best
Tony

Hi Tony,

Thanks for the reply, I too am pretty dry at night it is daytime when I don't seem to have any control, I tried what you said about stopping mid stream and I can do that, and it is a fierce stream, how often do you do the exercises? I read that if you do them too much the muscles get tired, do you try and hold yourself when you are walking about or do you just relax, got my post Op PSA test on Tuesday with the results on Monday 21st so will find out then if the OP was a success, wishing you well with your results,

Paul

Thanks Chris,

Have downloaded the APP looks good will give it a try, what level did you use,

Paul

Paul

I would just randomly pick a level to give a bit if variety. My incontinence journey has not been the norm. I did my PFEs for a few months before my RARP and although I was almost dry 4 days post catheter still continued for many months. My scar tissue treatments, clip removal and punctured urethra compromised my continence, some times dumping 170ml at a time. I have not done a pelvic floor exercise since mid January this year, yet have still almost regained my continence for the third time this year. Others have mentioned it but there is alot to be said for telling yourself you are not going to be incontinent. I am not suggesting you stop the PFEs , different approaches work for different people. I now only suffer urge incontinence, if I wait too long I leak as I am getting it out. I asked a Uro nurse a few weeks ago what her opinion of PFEs was, she said do a few but don't tire yourself out doing too many.

I wrap about 12 sheets of loo roll in a nappy liner so a small leak is absorbed before it gets the pad wet, I have a thing about walking around with a soiled pad even though they have excellent absorption and odour control.

I used the sheath system for a couple of weeks and that was a great help, my medical team frowned on their use, they think it makes you lazy, I found it gave me confidence to hold on that bit longer.

Thanks Chris

Hi paul

Your inbox is full for private messages. Thats why you are not receiving anything from me

John

All empty,

Paul

That's good news.

Hope things are improving on the incontinence front.

Enjoy Christmas and good luck with your next PSA test.

KRO...

Hi Kro,

things are better with the incontinence, 1 pad a day, I only really leak when out and about and the usual coughing and sneezing, I still get really annoyed when I leak, 1st PSA undetectable next in March,

have a great Christmas and new year

Paul

Hi Paul
Yes the incontinence is much better and like yu my leaks are coughing, sneezing etc. I too only use one pad and it's the lightweight one now, but if going out for the day i use the next one up, as a 'just in case'.
My first PSA was negative at 0.09, but they seemed worried about the Vesicula seminal and any residue cells left hence the Radiotherapy, I think it's a 'belt and braces' job to avoid any problems in the future, well at least that is how it was put across so I hope nothing was lost in translation from Spanish to English.
But they did say I could drink red wine (Spanish of course) and malt whisky so am very happy about that especially over Christmas.
All the best to you and your family
regards
Tony

Hi Paul
Yes very similiar, certainly the alcohol does affect it but worse for me is drinking tea and I love my tea. It's the weak flow that is most irritating for me as I seem to be in the toilet for ages before stopping, bit embarrasing when I am out with friends but they all understand my problems and getting out and enjoying our lives is what makes going through all this worth while.

Great that your readings are so low and a negative margins is really great news.

All the best
Tony

Hi Paul
I went yesterday for the first day without any pads, one small victory but such a great boost for me. I do go to the toilet only once at night now, and depending on the amount of liquid i take in my frequency seems to be back to acceptable levels.
It is a slow job but for me almost three months post op, i feel my control is almost back to normal, I do however wear a pad if I am doint anything active, but so far no accidents and I have always been able to hold it until I can get to a toilet.
The only concern (apart from still waiting to start my Radiotherapy) is that my flow does seem to be weaker than previously.
Everything seems to be progressing well for you and I hope it continues to go well.
regards
Tony

Hi Tony,

Seems like we are very similar, I wear no pads at night and only leak during the day when I am out and about but that is getting better, my flow is like a teenager but frequency is a bit of a problem, I get up twice at night it was sometimes 5-6 times so it is getting better still can't have everything at once and we are all different,

Paul