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Side effects after RP

User
Posted 09 Mar 2019 at 15:23

Diagnosed with Stage 3 last month. I have have an appointment with the urologist on Monday to discus options of RT or RP, my gut feeling from day 1 has been  robotic RP. but I'm worried about Incontinence problem, I hear about Nerve sparing, but is that only for erection or bladder control as well. 

 

User
Posted 09 Mar 2019 at 22:01

Royston

Welcome to the forum download the toolkit it will give you a wealth of information including questions to ask your medical team . In very simple terms, the question of nerve sparing is usually more related to erections and erectile dysfunction. When the prostate is removed the sphincter muscle is removed with it. The sphincter is the semi automatic valve that keeps the bladder from leaking. Once the sphincter is removed you rely on the lower sphincter and pelvic muscles to control urine. Doing pelvic floor exercises before surgery may help maintaining or recovering continence after surgery.

Thanks Chris

 

 

User
Posted 10 Mar 2019 at 06:32
Hi Royston,

If you do opt for surgery, please check with the surgeon about his results (outcomes in medical parlance). You stand a much better chance of retaining continence with a high volume surgeon who does more than, say, 100 prostatectomies a year.

My own surgeon does 300-400 a year, and my continence is fine, nine months after the op.

Best of luck.

Cheers, John.

User
Posted 10 Mar 2019 at 14:17
As well as the skill and experience of the surgeon, continence is affected by things like how much cancer you have in the apex of the gland and therefore whether or not the second valve (the lower sphincter) has to be removed / re-sited. Sometimes, there is accidental damage to the urethra during the op and this can be permanent or temporary. For some men, the brain never re-learns the new signals from the bladder or the nerve pathways are damaged during surgery (often burnt rather than cut) so that the signals can't get to the brain at all. For others, the signals / pathways do work eventually but the man has to approach continence in the same way that a toddler becomes potty-trained, ie it is a conscious act that becomes semi-conscious and eventually sub- and then un-conscious.

Considering all that, it is a miracle that anyone actually does regain their continence!

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

User
Posted 26 Apr 2019 at 09:04

Yes it is normal. I had surgery 9 days ago and the catheter was removed on Wednesday. I had no problem with the catheter apart from the slight leakage you describe.

User
Posted 26 Apr 2019 at 09:27

R

I suffered from leakage (by passing) past the catheter more when passing a motion that at other times, it can be quite uncomfortable and sometimes you may pass a very small amount of blood. Your catheter may be slightly further into the bladder and balloon may not be sitting right at the bottom, DO NOT try and move it. If the end of the penis becomes sore get some instilagel or hydro Caine gel.

You will get more info at your follow up appointment when the prostate has examined and you have had your post op PSA test. My surgeon rang me a couple of weeks post op with the histology results.

Enjoy not getting up in the night for the next week and hopefully you may be one of the guys who are dry from day one after catheter removal.

Thanks Chris

User
Posted 26 Apr 2019 at 13:12
Well, at least you know your pipework is all connected up properly!

I had a supra-pubic catheter coming out of a hole below my navel so I was spared a urethral catheter which I imagine would be horrible. You’ll be glad to see the back of it, I’m sure.

Cheers, John.

User
Posted 26 Apr 2019 at 15:09

I agree with the previous replies. I had some bypassing around the catheter especially when doing a number two!

Ido4

User
Posted 16 May 2019 at 07:58

Hi Roy. Sorry to hear about your issues.  One thing I have come to realise after 3 urological procedures is that information on what are 'normal' post op occurrences can be sadly lacking. Following a urethrotomy 6 years ago I leaked from the catheter,  passed large clots and got horrendous bladder spasms, all of which resulted in me phoning the urology ward only to be told that it was 'normal.' I do hope that your condition improves very soon. I have been very fortunate in that following catheter removal I have been dry at night and using 1 pad a day and even that is nowhere near full. However I restarted weekly self catheterisation a fortnight ago and now my pee is cloudy so I am off to the GP today  (if I can get an appointment - yeah, right, good luck) to get it checked for infection. 

User
Posted 16 May 2019 at 09:17
I wasn’t warned about passing blood clots weeks post-operative. When I did, the way I looked at it was that the external puncture wounds would be probably be healing at a similar rate to the internal wounds.

Until the external laparoscopic incisions are completely healed, don't expect your innards to be.

Cheers, John.

User
Posted 28 May 2019 at 11:29

Roy

I lost and regained my continence numerous times following my dilations, sometimes I abstained from doing pelvic floor exercises and regained my continence but that may have been due to all the previous exercises.  It is a no cost option so keep at it. I had a phone app that I can no longer find, the app prompted you to do the exercises. The advice I had was vary the length of hold and release,do  10 short hold and release of say a couple of seconds, another time do ten hold for twenty seconds and release. 

Thanks Chris

User
Posted 28 May 2019 at 12:03

hi Roy 

keep pfe  going.  it will make a difference both 're. bladder control and ED  .

Not sure I ever did  4 x 15 mins though.  you need to build slowly otherwise can overtire muscles.   I tended to probably spend no more than a couple of minutes a day now and tend to go 5 second pull up rather than hold for a long time.  horses for courses.   whatever suits you.   It's  really knowing you have muscles that you can control and I'm sure it must help. 

Unfortunately there are members on here and I feel for them. Despite heroic efforts on their part for control  they have no sphincter or a damaged sphincter . 

 

As Lyn post.  down to skill and experience of surgeon. Especially the time spent attaching bladder neck to urethra  .  This will take 3 weeks at least to heal . and would explain clots and bleeding.   so take it easy.   Like any cut in body . if any leakage or movement.  then scar tissue can build up. problems  further down the line . 

At best you will have 1 sphincter and the body needs to 're learn.  control . I was so so fortunate being dry after catheter removed after 7 days.  keep liquid . ie water through put.  don't try and drink less. 

regards

Gordon  

Edited by member 28 May 2019 at 12:16  | Reason: Not specified

User
Posted 19 Jun 2019 at 09:20

Ido4

Not sure what he said made much sense to me.

Gleason 3+4=7.  Something about 40%.   

But most importantly Clear Margins and PSA undetectable.

 

Onwards and Upwards

Show Most Thanked Posts
User
Posted 09 Mar 2019 at 22:01

Royston

Welcome to the forum download the toolkit it will give you a wealth of information including questions to ask your medical team . In very simple terms, the question of nerve sparing is usually more related to erections and erectile dysfunction. When the prostate is removed the sphincter muscle is removed with it. The sphincter is the semi automatic valve that keeps the bladder from leaking. Once the sphincter is removed you rely on the lower sphincter and pelvic muscles to control urine. Doing pelvic floor exercises before surgery may help maintaining or recovering continence after surgery.

Thanks Chris

 

 

User
Posted 10 Mar 2019 at 06:32
Hi Royston,

If you do opt for surgery, please check with the surgeon about his results (outcomes in medical parlance). You stand a much better chance of retaining continence with a high volume surgeon who does more than, say, 100 prostatectomies a year.

My own surgeon does 300-400 a year, and my continence is fine, nine months after the op.

Best of luck.

Cheers, John.

User
Posted 10 Mar 2019 at 14:17
As well as the skill and experience of the surgeon, continence is affected by things like how much cancer you have in the apex of the gland and therefore whether or not the second valve (the lower sphincter) has to be removed / re-sited. Sometimes, there is accidental damage to the urethra during the op and this can be permanent or temporary. For some men, the brain never re-learns the new signals from the bladder or the nerve pathways are damaged during surgery (often burnt rather than cut) so that the signals can't get to the brain at all. For others, the signals / pathways do work eventually but the man has to approach continence in the same way that a toddler becomes potty-trained, ie it is a conscious act that becomes semi-conscious and eventually sub- and then un-conscious.

Considering all that, it is a miracle that anyone actually does regain their continence!

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

User
Posted 13 Mar 2019 at 20:24

Had a long coversation with consultant Found out that I'm T2b. decided and been advised to go with RP. Feel positive about expected outcome, just waiting for surgery date, (about 4-6 weeks)

User
Posted 26 Apr 2019 at 08:00

A big thank you to all for the advice found on this site.

I'm 1 week post Robotic RP, surgeon said he was please how it went. Not really given any specifics as some of you seem to have.  Appointment to have Catheter removed in another week.

My main concern is i'm still leaking from the end of my penis with catheter in place, mainly during the day, when I asked about this before being discharged I was told it's because the tube was hanging loose,  Now its fixed in place with a support on my leg, I still get leakage when i move, cough, sneeze etc. 

Has anyone else had a similar experience.

User
Posted 26 Apr 2019 at 09:04

Yes it is normal. I had surgery 9 days ago and the catheter was removed on Wednesday. I had no problem with the catheter apart from the slight leakage you describe.

User
Posted 26 Apr 2019 at 09:27

R

I suffered from leakage (by passing) past the catheter more when passing a motion that at other times, it can be quite uncomfortable and sometimes you may pass a very small amount of blood. Your catheter may be slightly further into the bladder and balloon may not be sitting right at the bottom, DO NOT try and move it. If the end of the penis becomes sore get some instilagel or hydro Caine gel.

You will get more info at your follow up appointment when the prostate has examined and you have had your post op PSA test. My surgeon rang me a couple of weeks post op with the histology results.

Enjoy not getting up in the night for the next week and hopefully you may be one of the guys who are dry from day one after catheter removal.

Thanks Chris

User
Posted 26 Apr 2019 at 10:39

Thanks for the replys, makes me feel a lot better to know what I'm experiencing is sort of normal, not sure if I'll get more info when catheter is removed next week as only seeing the nurse.  Have already been sent a follow up appointment but that's not until September.

Thanks again

Roy S

 

Edited by member 26 Apr 2019 at 10:40  | Reason: Not specified

User
Posted 26 Apr 2019 at 13:12
Well, at least you know your pipework is all connected up properly!

I had a supra-pubic catheter coming out of a hole below my navel so I was spared a urethral catheter which I imagine would be horrible. You’ll be glad to see the back of it, I’m sure.

Cheers, John.

User
Posted 26 Apr 2019 at 15:09

I agree with the previous replies. I had some bypassing around the catheter especially when doing a number two!

Ido4

User
Posted 16 May 2019 at 07:35

Just to share my experiences.

Thanks for the warning Chris Colwick (Enjoy not getting up in the night for the next week)  up at least twice a night now, never got up before.

4 weeks post RP, 2 weeks post catheter removal, leakage quite bad unless I'm sitting.  Doing my PFE, aiming for every 2 hours, (as long as I remember). Got dragged round the "T" shop by the OH,  leaked 210 mil in 20 minutes, getting through up to 4 pads a day, bit wary of leaving the house now.

Had a shock yesterday evening, lost a big (well to me it was massive) clot then proceeded to pee & leak blood for 2 hours, phoned Urology Dept, advised to go to A&E, lost a second large clot whilst there.  Finally told this was quite normal and about the right time after, given Antibiotics, got to attend Urology today for check up. Fingers crossed pee back to normal colour after loosing the 2nd clot. 

I must admit I was told that post catheter that I could loose  clots, not warned how long for or how much. I know we're all different. But it would have helped if i was told It could happen up to so and so length of time.

Sure I'm not the only one down this road, Onwards & upwards.

Roy S

 

User
Posted 16 May 2019 at 07:58

Hi Roy. Sorry to hear about your issues.  One thing I have come to realise after 3 urological procedures is that information on what are 'normal' post op occurrences can be sadly lacking. Following a urethrotomy 6 years ago I leaked from the catheter,  passed large clots and got horrendous bladder spasms, all of which resulted in me phoning the urology ward only to be told that it was 'normal.' I do hope that your condition improves very soon. I have been very fortunate in that following catheter removal I have been dry at night and using 1 pad a day and even that is nowhere near full. However I restarted weekly self catheterisation a fortnight ago and now my pee is cloudy so I am off to the GP today  (if I can get an appointment - yeah, right, good luck) to get it checked for infection. 

User
Posted 16 May 2019 at 09:17
I wasn’t warned about passing blood clots weeks post-operative. When I did, the way I looked at it was that the external puncture wounds would be probably be healing at a similar rate to the internal wounds.

Until the external laparoscopic incisions are completely healed, don't expect your innards to be.

Cheers, John.

User
Posted 28 May 2019 at 08:18

Update, 6 weeks post op, no more signs of loosing clots.   still have major leaking issues,  ok when sat down, leaking as soon as I move. Try to  tighten PF when coughing, but makes no difference.  Can get through as many as 4-5 pads a day.  Still trying to do PFE every 2 hours but not sure if its helping.  Advised to do 15 minute exercises 4 times daily, (hold for 5 seconds then relax for 5 )

I know its only six weeks but has anyone else felt that PFE are not helping ?  Or am I expecting to much ?

Onwards & upwards.

Roy S

User
Posted 28 May 2019 at 11:29

Roy

I lost and regained my continence numerous times following my dilations, sometimes I abstained from doing pelvic floor exercises and regained my continence but that may have been due to all the previous exercises.  It is a no cost option so keep at it. I had a phone app that I can no longer find, the app prompted you to do the exercises. The advice I had was vary the length of hold and release,do  10 short hold and release of say a couple of seconds, another time do ten hold for twenty seconds and release. 

Thanks Chris

User
Posted 28 May 2019 at 12:03

hi Roy 

keep pfe  going.  it will make a difference both 're. bladder control and ED  .

Not sure I ever did  4 x 15 mins though.  you need to build slowly otherwise can overtire muscles.   I tended to probably spend no more than a couple of minutes a day now and tend to go 5 second pull up rather than hold for a long time.  horses for courses.   whatever suits you.   It's  really knowing you have muscles that you can control and I'm sure it must help. 

Unfortunately there are members on here and I feel for them. Despite heroic efforts on their part for control  they have no sphincter or a damaged sphincter . 

 

As Lyn post.  down to skill and experience of surgeon. Especially the time spent attaching bladder neck to urethra  .  This will take 3 weeks at least to heal . and would explain clots and bleeding.   so take it easy.   Like any cut in body . if any leakage or movement.  then scar tissue can build up. problems  further down the line . 

At best you will have 1 sphincter and the body needs to 're learn.  control . I was so so fortunate being dry after catheter removed after 7 days.  keep liquid . ie water through put.  don't try and drink less. 

regards

Gordon  

Edited by member 28 May 2019 at 12:16  | Reason: Not specified

User
Posted 11 Jun 2019 at 12:23

Update.

8 weeks post op.  Blood test yesterday for 1st PSA post RP, appointment next Monday for pathology report on prostrate. 

Feel more positive about leaking issues after a phone call from specialist nurse today.  Like most of us was hoping for miracle return to normal continence, (I wish) but said I was doing well at the 8 week mark.

Gone from 4 pads a day @ week 6 down to 1 or 2 most days, dry at night, although can be up  1 or 2 times a nights.  Still  doing PFE's and seem to be slowly helping.

Onwards and upwards.

User
Posted 19 Jun 2019 at 08:13

Had 8 week Post op follow up.

PSA undetectable, clear Margins,  another PSA check in 6 months (though 3 was the norm at this early stage)

Consultant said continence should improve by 6 month mark (learning how to cope with that)  keep up with PFE's, "act as though the cancer has gone and get on with the rest of your life"

Couldn't be more pleased.

Onwards & upwards

 

User
Posted 19 Jun 2019 at 08:48

Steven

Thank you for you encouraging words,  I'm unable to PM you as "I've not participated in enough public conversations".

To answer you question, Retirement is 16 months away, but I have a very understanding employer. 

Onwards and Upwards

User
Posted 19 Jun 2019 at 09:11

Excellent results. What was your post op histology?

 

Ido4

User
Posted 19 Jun 2019 at 09:20

Ido4

Not sure what he said made much sense to me.

Gleason 3+4=7.  Something about 40%.   

But most importantly Clear Margins and PSA undetectable.

 

Onwards and Upwards

User
Posted 19 Jun 2019 at 11:42

Congratulations on your successful surgery, and your instructions to ‘act as though the cancer has gone and get on with the rest of your life”, which is exactly what I have done for the past year.

I don’t want to be a damp squib, but before you skip happily off into the sunset, you may or may not care to consult The Memorial Sloane Kettering Hospital prognostication nomogram, where you enter your post-operative results and it comes up with a statistical forecast of the probability of biochemical recurrence (the buggers back!) over different time-lines and the likelihood of surviving this cancer for fifteen years (in my case it’s 98%, by which time I might be dead of something else).

https://www.mskcc.org/nomograms/prostate/post_op

You are quite right that it is normal to have three-monthly post-operative PSA tests, at least for the first year or two. I have had five or six this past year which were all ‘undetectable’, so I have now switched to four-monthly testing for year two. Maybe your surgeon is an extreme optimist, but I have two friends who both now have post-op recurrence, one immediately afterwards, and the other a year later. They both had the top surgeons money can buy (not mine).

Best of luck for the future.

Cheers, John

Edited by member 19 Jun 2019 at 12:01  | Reason: Not specified

 
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