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Post op urinary incontinence

User
Posted 08 Nov 2020 at 19:08

Hi everyone 

My husband who is 59 has just been diagnosed with early stage prostate cancer. Although the consultant couldn't give his exact opinion, he seems to be edging towards surgery as the preferred option due to my husband being fairly young for this diagnosis. One option was watchful waiting which didn't seem so great as living with a cancer seems a scary option. Radiotherapy which was also offered seemed to have a lot of negative impact which also didn't appeal. The thing that my husband (and I) are particularly worried about post op is the incontinence issue. He is very fit and has an active lifestyle. We are worried that this may be a permanent outcome post op and will ruin his life. He doesn't mind the issue if it is temporary but is very concerned that he will have to wear pads for the rest of his life.

Any advice or personal experiences to reassure us would be gratefully received.

Many thanks 

 

User
Posted 09 Nov 2020 at 07:29

Hi Babs1812

I understand it is a worrying time for you both.

I had surgery back in March this year. At the time the surgeon was very confident that incontinence would not be a long term issue. Think I was fully dry at about 10 weeks. Even before that the leaks were only late in the day when I was tired. There are plenty on here that have experienced similar....or better

Good luck

User
Posted 12 Nov 2020 at 20:21

Hello

I was diagnosed beginning Sept 2020 - G 3+4, and G3+3 other side. I’m 66, fit and active, and a respectable weight of 11st 3 at 5’7. PSA3.8

I was given all options, but decided against AS, decided against RT & HT as really wanted to get on with things, so RALP surgery at Pinderfields 23/10/20. 

Now three weeks post surgery:-

- No pain since day after surgery

- Feel 95%, just walked 9miles today

- Dry at night no incontinence 

- Using 1 maybe 2 pads per day... but improving

- Got ED, follow up will be in three weeks to start sorting that out  

 

Edited by member 12 Nov 2020 at 20:37  | Reason: Not specified

User
Posted 08 Nov 2020 at 23:38

There is a difference between Watchful Waiting and Active Surveillance. I suspect AS was offered nor WW. Watchful waiting is for people diagnosed at an old age (late eighties) and is merely managing the disease, in the hope that something else will kill you first (heart attack, stroke, etc.) .

Active Surveillance, means keeping an eye on the disease with the intention of treating the disease, hopefully curing it, before it progresses too far. If you can live with a little uncertainty it is very good, as it had no side effects (apart from worry), it may be a bit of a nuisance having biopsies moderately frequently, but if things progress you then switch to treatment. If this has been offered it could be the best choice, the disease may not progress, you may get five years or more without having to worry about incontinence ED etc. 

I did not have surgery I had radiotherapy. It is less likely to cause incontinence, and just as effective at curing PCa as surgery. The only problem is that patients find it hard to believe that invisible radio waves are as good at killing cancer as the more brutal surgeons knife.

I think you will find plenty of people here who have had surgery and only very temporary incontinence. But don't rush in to surgery for an emotional need to have it "cut out" 

 

Dave

User
Posted 09 Nov 2020 at 08:34

Hello Babs1812,

Continence was my biggest worry about surgery.

Another another data point for you

I had Retzius robot-assisted radical prostatectomy surgery in June. I was pad free after 6 weeks but not all hospitals offer Retzius sparing.

When I quizzed my oncologist about continence he advised me that my membranous urethral length was 17mm (I assume from MRI) and this boded well for recovery after surgery.

I understand that this is a worrying time for you, as it was for me. There is a lot of experience on this board and I found people's profile stories helpful to read.

Regards,

Richard

User
Posted 09 Nov 2020 at 09:10
NHS data is that at 12 months after the op, 90% of men are managing on 1 pad per day or less. There seems to be no way of predicting who will be left incontinent - it can happen even with the best surgeons.

If incontinence is a deal breaker for your husband, I would recommend he sees an oncologist to talk about brachytherapy and external beam radiotherapy options before making his final decision.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2020 at 10:29
Definitely do consider radiotherapy if this is a major concern. It's something that worried me, too, so I was rather relieved when RT was the recommended treatment for me. I didn't find RT too awful an experience. Not great, but certainly bearable.

Best wishes,

Chris

User
Posted 12 Nov 2020 at 21:01

Originally Posted by: Online Community Member

Any advice or personal experiences to reassure us would be gratefully received.

Hi Babs. I was 50 when I had my surgery in June. Active and fit, like your husband (it helps with recovery from surgery). Catheter out after 14 days (Friday) and I decided not to wear a pad on the Sunday. No issues after that except one small random dribble at night a few weeks later and nothing since.

My surgery was delayed 2 months due to COVID so I had time to do lots of pelvic floor exercises. Some surgeons say this helps. Others think it doesn't.

My surgeon said "at your age and fitness, that's about what I would expect".

Hope this helps. I'm not necessarily typical. At my followup meeting today with urology specialist nurse I was told "you're the youngest person I've seen" although there are guys on here, sadly, a lot younger than 50.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 12 Nov 2020 at 21:25

Hi Babs, your story is similar to mine in that firstly for me it was picked up that something wasn't right in a PSA test, one that I have to say my doctor was not happy that I had asked the nurse to add that to the list when carrying out a "well mans check".   I had a psa reading of 4.5, referred then to a Urologist which included an MRI and 10 sample biopsy,   The results were good in that I was told this was not agressive and as I had no symptoms and the word Cancer didn't really concern me as I had faith in that regular checks would mean that if things progressed we would deal with them then.   That was 5 years ago and during that time I have had a total of 3 biospy's and 2 MRI coupled with bloods checked every three month.

 

I'm now at a stage where medical intervention is now recomended and robotic surgery has been the suggested choice of my consultant, but before I make the decision I want to discuss my case with an oncologist.   Whatever I choose I have been told that everything has been caught in time and the cancer is within the prostate.

 

I'm also going to consider a treatment called HIFU but I'm not sure if I'm too far on for this to be effective and looking back I wish that I had done more research at the time.    To this day though I have no symptons at all that would indicate anything wrong.

 

Good luck with his progress the main thing is that its been caught early enough to do some thing about it.

 

All the very best

Ken

User
Posted 12 Nov 2020 at 21:56

Hello Babs

Have I any regrets on the choice I made, honestly no.... but saying that, once I’ve decided on a course/direction I just look forward as I can’t change what I’ve done so move on. 

I read that RT with associated HT can put weight on you, give you moobs, et etc.... I was having non of that. 

Good luck 

User
Posted 12 Nov 2020 at 23:26

Hi Babs,

Nothing is certain obviously, I was 59 at op. Dry in less that 48 hrs. Catheter was out at 7 days. I did and still do Kegel exercises, maybe luck I was dry so soon.  All the very best to you both.

Regards Gordon

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User
Posted 08 Nov 2020 at 23:38

There is a difference between Watchful Waiting and Active Surveillance. I suspect AS was offered nor WW. Watchful waiting is for people diagnosed at an old age (late eighties) and is merely managing the disease, in the hope that something else will kill you first (heart attack, stroke, etc.) .

Active Surveillance, means keeping an eye on the disease with the intention of treating the disease, hopefully curing it, before it progresses too far. If you can live with a little uncertainty it is very good, as it had no side effects (apart from worry), it may be a bit of a nuisance having biopsies moderately frequently, but if things progress you then switch to treatment. If this has been offered it could be the best choice, the disease may not progress, you may get five years or more without having to worry about incontinence ED etc. 

I did not have surgery I had radiotherapy. It is less likely to cause incontinence, and just as effective at curing PCa as surgery. The only problem is that patients find it hard to believe that invisible radio waves are as good at killing cancer as the more brutal surgeons knife.

I think you will find plenty of people here who have had surgery and only very temporary incontinence. But don't rush in to surgery for an emotional need to have it "cut out" 

 

Dave

User
Posted 09 Nov 2020 at 07:29

Hi Babs1812

I understand it is a worrying time for you both.

I had surgery back in March this year. At the time the surgeon was very confident that incontinence would not be a long term issue. Think I was fully dry at about 10 weeks. Even before that the leaks were only late in the day when I was tired. There are plenty on here that have experienced similar....or better

Good luck

User
Posted 09 Nov 2020 at 08:34

Hello Babs1812,

Continence was my biggest worry about surgery.

Another another data point for you

I had Retzius robot-assisted radical prostatectomy surgery in June. I was pad free after 6 weeks but not all hospitals offer Retzius sparing.

When I quizzed my oncologist about continence he advised me that my membranous urethral length was 17mm (I assume from MRI) and this boded well for recovery after surgery.

I understand that this is a worrying time for you, as it was for me. There is a lot of experience on this board and I found people's profile stories helpful to read.

Regards,

Richard

User
Posted 09 Nov 2020 at 09:10
NHS data is that at 12 months after the op, 90% of men are managing on 1 pad per day or less. There seems to be no way of predicting who will be left incontinent - it can happen even with the best surgeons.

If incontinence is a deal breaker for your husband, I would recommend he sees an oncologist to talk about brachytherapy and external beam radiotherapy options before making his final decision.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2020 at 10:29
Definitely do consider radiotherapy if this is a major concern. It's something that worried me, too, so I was rather relieved when RT was the recommended treatment for me. I didn't find RT too awful an experience. Not great, but certainly bearable.

Best wishes,

Chris

User
Posted 12 Nov 2020 at 20:21

Hello

I was diagnosed beginning Sept 2020 - G 3+4, and G3+3 other side. I’m 66, fit and active, and a respectable weight of 11st 3 at 5’7. PSA3.8

I was given all options, but decided against AS, decided against RT & HT as really wanted to get on with things, so RALP surgery at Pinderfields 23/10/20. 

Now three weeks post surgery:-

- No pain since day after surgery

- Feel 95%, just walked 9miles today

- Dry at night no incontinence 

- Using 1 maybe 2 pads per day... but improving

- Got ED, follow up will be in three weeks to start sorting that out  

 

Edited by member 12 Nov 2020 at 20:37  | Reason: Not specified

User
Posted 12 Nov 2020 at 20:38

Hi wombatGD

Thank you for your message. That's reassuring to read your progress and how well you're doing so early in your recovery. Do you regret having the surgery over any other treatment? I hope your progress continues well

I wish you all the best in the coming months and would love to hear updates of your progress.

Best wishes 

Barbara

User
Posted 12 Nov 2020 at 21:01

Originally Posted by: Online Community Member

Any advice or personal experiences to reassure us would be gratefully received.

Hi Babs. I was 50 when I had my surgery in June. Active and fit, like your husband (it helps with recovery from surgery). Catheter out after 14 days (Friday) and I decided not to wear a pad on the Sunday. No issues after that except one small random dribble at night a few weeks later and nothing since.

My surgery was delayed 2 months due to COVID so I had time to do lots of pelvic floor exercises. Some surgeons say this helps. Others think it doesn't.

My surgeon said "at your age and fitness, that's about what I would expect".

Hope this helps. I'm not necessarily typical. At my followup meeting today with urology specialist nurse I was told "you're the youngest person I've seen" although there are guys on here, sadly, a lot younger than 50.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 12 Nov 2020 at 21:15

Hi Alex 

Thank you, this is very reassuring. I'm really pleased for you and that you are making such great progress. I hope my husbands results are as successful as yours.

All the best for your continued improvement. 

Best wishes

Babs

User
Posted 12 Nov 2020 at 21:25

Hi Babs, your story is similar to mine in that firstly for me it was picked up that something wasn't right in a PSA test, one that I have to say my doctor was not happy that I had asked the nurse to add that to the list when carrying out a "well mans check".   I had a psa reading of 4.5, referred then to a Urologist which included an MRI and 10 sample biopsy,   The results were good in that I was told this was not agressive and as I had no symptoms and the word Cancer didn't really concern me as I had faith in that regular checks would mean that if things progressed we would deal with them then.   That was 5 years ago and during that time I have had a total of 3 biospy's and 2 MRI coupled with bloods checked every three month.

 

I'm now at a stage where medical intervention is now recomended and robotic surgery has been the suggested choice of my consultant, but before I make the decision I want to discuss my case with an oncologist.   Whatever I choose I have been told that everything has been caught in time and the cancer is within the prostate.

 

I'm also going to consider a treatment called HIFU but I'm not sure if I'm too far on for this to be effective and looking back I wish that I had done more research at the time.    To this day though I have no symptons at all that would indicate anything wrong.

 

Good luck with his progress the main thing is that its been caught early enough to do some thing about it.

 

All the very best

Ken

User
Posted 12 Nov 2020 at 21:56

Hello Babs

Have I any regrets on the choice I made, honestly no.... but saying that, once I’ve decided on a course/direction I just look forward as I can’t change what I’ve done so move on. 

I read that RT with associated HT can put weight on you, give you moobs, et etc.... I was having non of that. 

Good luck 

User
Posted 12 Nov 2020 at 23:26

Hi Babs,

Nothing is certain obviously, I was 59 at op. Dry in less that 48 hrs. Catheter was out at 7 days. I did and still do Kegel exercises, maybe luck I was dry so soon.  All the very best to you both.

Regards Gordon

User
Posted 29 Nov 2020 at 22:19

Am 54, had RP 15 months ago.

Still have to use a pad when I drink and when going for a longer walks.

Operated by reputed surgeon and paid close to 20K for Robotic nerve sparing surgery.

Its luck and not necesarily the skill of the surgeon

There are many who have been lucky, but large proportion remain with some degree of incontinence as far as literature goes and what I seen in this forum.

I was also very worried about incontinence pre op, but had to have surgery as there was degree of obstruction and no other treatment was going to help.

Talk through all options with surgeon and oncologist

 
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