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had robitic surgery

User
Posted 07 September 2016 11:04:18(UTC)

hi my name is gary I had robotic surgery in march 2016 gleason grade 7 I  have major issuses with severe incontinence looks like I may need artificial spincter but got to wait 6 months does any one else have these issuses since robotic surgery trying a new drug called yentreve to try to get incontinence under  control using 8 pads a day so not good I am trying to stay positive cus at least I no longer have cancer look forward to any replys thanks

User
Posted 08 September 2016 14:46:06(UTC)

hi andy thanks for your reply nice to hear you doing ok  I just hope one day it just mite get improvement but at moment got to try and cope with it and see what happens for next six weeks till I see my consultant once again many thanks gary 

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User
Posted 07 September 2016 11:16:18(UTC)

Hi Gary. I have an AUS and so far (8 months) it is working like a dream. Click on my usename to see my profile. I kept a diary of the AUS install and experiences with it. I'll post the URL when I can find it. Don't panic, life gets back to as near normal as makes no difference.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 07 September 2016 11:19:02(UTC)
Here you go:

Diary

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 07 September 2016 14:08:26(UTC)

hi tony many thanks for that does your aus cause any discomfort.its just the fact of waiting I am using sheaths as well but don't realy like them but ok when I go out I know that it will come to aus because I do not have much control I find it hard when I first stand and do anything that involves activity I know its a minor blip but I just wanted the cancer out and it was confined to the prostate only thanks 

User
Posted 07 September 2016 14:18:14(UTC)

hi tony I had turp in November 2015 then LRP in march 2016 gleason grade 7 cancer I am 56 years old married 32 years with fantastic family around me that's whats keeping me positive at moment my psa was 0 in april and just had it done yesterday and waiting the result of that many thanks gary

User
Posted 07 September 2016 18:09:07(UTC)

Hi Gary

No discomfort at all from the AUS. Initially I was concerned that the extra component in my scrotum might cause some pain, but in practice there is plenty of room.

The undisputed benefit for me is the sheer relief at not having to think about and plan for the problems of incontinence before doing anything. Particularly after the failure of the sling, I was heading rapidly for depression - made worse because I was telling myself that I did not have cancer any more so why was I making a fuss. Experience with the AUS has made the sun shine again.

Obviously it is not up to the standard of the sphincter that nature gave me, but it is a really close second.

I have an AMS-800 sphincter from Boston Scientific in USA. My consultant has carried out many implants and considers these to be the most reliable and long-lasting.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 07 September 2016 21:13:30(UTC)

many thanks for your advice just going to keep positive for now its going to be a long six months ill let you know how I get on wish you all the best thanks

User
Posted 08 September 2016 06:39:36(UTC)
G

Sometimes incontinence can surprise you and stop almost overnight, so it is good to stay positive. You say you are using 8 pads a day but do you know how much you are actually leaking each day i.e. are you weighing the pads and how often are you leaking ? Some men seem to first stop leaking over night then full continence follows.

Following a series of follow up ops I have beaten incontinence several times.

Thanks Chris

User
Posted 08 September 2016 10:39:36(UTC)

hi chris all my pads realy wet just flows out when I stand up or start walking anything with effort and it flows out I am up four times in night and just get to the toilet before I wet myself I have had few accidents but ok been to see consultant and at present got to get to my 12 months from opp 6 months now can I ask how old you are it seems older people have a better outcome or it just me I just wanted the cancer out and was not willing to sit and wait many thanks gary 

User
Posted 08 September 2016 13:43:57(UTC)

Hi Gary I found after my op that standing or movement that like you it flowed out , I got fed up with the situation and just got the dogs on the leads and went for long walks had to have a complete strip and shower on return but slowly this did seem to help and was dry after about 16 weeks after op . Hope you improve Andy

User
Posted 08 September 2016 14:27:48(UTC)
G

I am almost 65, I was 99 percent dry 4 days post catheter removal after my RARP. Have a read of my profile, not sure about the better outcome bit. Although slightly incontinent again following my last op I don't think we are in the same situation. When my urethra was punctured I think there was some damage to the sphincter or its associated nerves. Yesterday I twice took a 2 mg detrusitol , no leaks during the day and instead of 4 night time visits it was none, flow is a bit slow and I have to self dilatate twice a day.

9 months ago I was dropping 170ml in one go, so strange things do happen.

Take care.

Thanks Chris
User
Posted 08 September 2016 14:42:42(UTC)

Hi, i am 55 and I had the op on June 17th this year. Now 12 weeks post op the incontinence is a lot better and I can get by on one pad in most 24 hour period. The only time I need two or more pads is is I move a lot but the funny thing is when I run 7k the pad is hardly damp so it must be just when I move in different ways. At night i am totally dry even after a few drinks.

My mate (58) in the UK had his op 4 weeks ago and was almost dry after 4 days so it shows everyone is different.

Keep positive and I hope it works out for you.

User
Posted 08 September 2016 14:46:06(UTC)

hi andy thanks for your reply nice to hear you doing ok  I just hope one day it just mite get improvement but at moment got to try and cope with it and see what happens for next six weeks till I see my consultant once again many thanks gary 

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User
Posted 08 September 2016 14:52:48(UTC)

thanks for your reply I am in uk looks like everybody different just seems to be when there is one in hundred people I am that one but I am possitve at moment just want to get some normality back cus can not work at moment cus I drive lorrys and my boss not very understanding but my life is most important at moment many thanks gary 

 

User
Posted 08 September 2016 15:56:26(UTC)

Originally Posted by: Online Community Member

 I drive lorrys and my boss not very understanding but my life is most important at moment many thanks gary 

 

 

shame you can't sack your boss.

 

I should of said in my earlier post I live in Spain and have been having rehabilitation to help with my incontinence, not nice but I do think it has helped. Is there nothing like this in the UK? 

User
Posted 08 September 2016 16:18:42(UTC)

I visit my incontinence nurse every other month at moment theres not a lot more they can do at moment you have to get to 12mths from surgery so I guess its going to be a long road to deal with this many thanks for your kind thoughts gary

 
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