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Prostatectomy after-effects

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User
Posted 09 Aug 2017 at 13:12

I'm a newcomer to this community, but have already seen some very helpful letters. I am 75 and have just undergone a robotic-assisted prostatectomy 3 weeks ago. I am trying to come to terms with the after-effects (mostly predicted) and would find it very helpful to hear how others have gone through what I am just starting.

User
Posted 13 Aug 2017 at 16:16
Hi John,

I had my prostate removed on 7th June this year with the robotic at Preston. The op went well and the surgeon was able to spare the nerves.. Being diagnosed at 54 by sheer chance really the option to remove the prostate seemed like the only one.

Initially,I was leaking every time I tried to do anything. Sitting on the sofa or at night was not too bad but it didn't take much to make me leak. Walking down the stairs whilst trumping and laughing was the perfect storm. 😀

Initially,I,was getting through 3 or 4 pads during the day but now I'm down to one during the day and one at night with neither really becoming appreciably wet. Don't get me wrong. If I try to lift to much or cough unexpectedly then I still do,leak but it's fairly easily manageable now. I'm back at work but working reduced hours due to the commute.

My main issue is with fatigue. I leave for work around half six and by half one I'm dead on my feet. Also,after a three day week I'm pretty well wiped out all weekend. I keep pushing to improve. I get a train to work and often walk the two and a half miles home from the station so I'm getting there.

I'm taking cialis, 20 mg twice a week and don't seem to have many problems in the bedroom although I think my drive has dropped off a bit. It all seems to have to be a little more planned but my wife is considerate and supportive.

So,I guess my main message John is keep plodding on. You will get there but it is a gradual thing and I think that thing too hard and worrying about it too much is just counterproductive. Keep up with the exercises and you will get there in the end.

May I wish you lots of luck on your journey.

Andy

User
Posted 09 Aug 2017 at 14:56
Hi Jon

Welcome to the club. Hope things are not too bad for you at the moment but it would be great if you could let us know if there are particular things that are troubling you. There are a lot of us on here willing to give whatever help we can, but as we have all had slightly different experiences if you can give us a bit of a steer then we know what areas to focus on.

Kind regards

Kevan

User
Posted 09 Aug 2017 at 15:00

Hi John,

Just bumping you up,I'm sure some one will talk to you about your procedure,sorry i can't help as i went down the Brachytherapy route but there are lots of members on this site with all the information you will need.Good Luck.

John.

 

 

User
Posted 09 Aug 2017 at 22:27

Hi Your question is a little too open, "how long is a piece of string." I could tell you where I was at day 21 and every day from 1 to 200 but I don't know how or if that would be of any help to you. In broad brush strokes, in the early days you are just hoping that the surgeon did his job well and that everything that was cut and tied stops bleeding and heals. Once the bleeding stops and whatever was cut heals and your body re-adjusts then you start to know where you are and the starting point from which you hope you will improve and make some progress towards a better place..

User
Posted 10 Aug 2017 at 06:17

Useful answers?
The two most common side effects are erectile dysfunction and incontinence which I presume you mean as the predicted ones. I'm guessing you will have had the catheter removed and wondering about the possible leakage.
Were you advised to do pelvic floor exercises to help regain the strength in the sphincter. If not they are probably worth doing. The time to regain bladder control varies from man to man but don't give up.
You should be having a post op appointment with your consultant in about 3-4 weeks to discuss the histology. If you don't know already you should find out then if any nerves were spared which are crucial for erectile function. If you are and wish to remain sexually active you need to discuss your options regarding erectile function. There is medication and support such as pumps to help. But it's crucial to discuss any side effects with your consultant to find out what support is available

Bri

User
Posted 21 Aug 2017 at 16:53
Hello again John.

Can I ask whether you are incontinent during the night?

In answer to your question about leaking while standing up I had the same problem. In my case I gradually got over it by standing in stages. I would move as far forward as possible, then bend forward and stay bent forward as I gradually stood on my feet. I would then wait a bit (still bent forward) and then gradually begin to straighten up while trying to tense the muscles to stop any leakage. Having straightened up I would wait a while before attempting to walk. This was a gradual process that wasn't always successful but bit by bit things improved.I'm not sure there is a right or wrong way to deal with this, but like you I had no control but after about 6 months things were pretty good. Just over 2 years down the line I still use the lightest pad during the day as insurance against the odd unplanned leak but am doing everything I did before.

All the best and keep in touch as anything you can add about your progress can be so helpful to others and will help others to help you.

Kevan

User
Posted 21 Aug 2017 at 21:54
Hi John

Just a quick note - don't think that anything is cheating. You have to try anything as it's your life so give anything a go but there are not always quick fixes. It's still relatively early days yet and we all mend at our own rate. I found that when using the pads got me down a bit I started using the Conveen sheaths which I found a great relief if out all day. But a step at a time.

All the best and stay positive.

Kevan

User
Posted 02 Sep 2017 at 13:39
Hi John

So pleased that the holiday went well for you and that you feel better for it.

Are things improving for you ? I do hope so but you have the right mind set which is to just get on with things by whatever means possible.

We are just getting ready for a week in New York and fly out on Monday so looking forward to that.

September 24th is the Distinguished Gentlemen's Ride and at the moment there are 24 of us taking part in the Swindon ride in aid of Prostate Cancer awareness and men's mental health issues. I have been preparing my gentlemanly apparel so just hoping it doesn't rain on the day.

All the very best with your progress.

Kevan

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User
Posted 09 Aug 2017 at 14:56
Hi Jon

Welcome to the club. Hope things are not too bad for you at the moment but it would be great if you could let us know if there are particular things that are troubling you. There are a lot of us on here willing to give whatever help we can, but as we have all had slightly different experiences if you can give us a bit of a steer then we know what areas to focus on.

Kind regards

Kevan

User
Posted 09 Aug 2017 at 15:00

Hi John,

Just bumping you up,I'm sure some one will talk to you about your procedure,sorry i can't help as i went down the Brachytherapy route but there are lots of members on this site with all the information you will need.Good Luck.

John.

 

 

User
Posted 09 Aug 2017 at 22:27

Hi Your question is a little too open, "how long is a piece of string." I could tell you where I was at day 21 and every day from 1 to 200 but I don't know how or if that would be of any help to you. In broad brush strokes, in the early days you are just hoping that the surgeon did his job well and that everything that was cut and tied stops bleeding and heals. Once the bleeding stops and whatever was cut heals and your body re-adjusts then you start to know where you are and the starting point from which you hope you will improve and make some progress towards a better place..

User
Posted 10 Aug 2017 at 06:17

Useful answers?
The two most common side effects are erectile dysfunction and incontinence which I presume you mean as the predicted ones. I'm guessing you will have had the catheter removed and wondering about the possible leakage.
Were you advised to do pelvic floor exercises to help regain the strength in the sphincter. If not they are probably worth doing. The time to regain bladder control varies from man to man but don't give up.
You should be having a post op appointment with your consultant in about 3-4 weeks to discuss the histology. If you don't know already you should find out then if any nerves were spared which are crucial for erectile function. If you are and wish to remain sexually active you need to discuss your options regarding erectile function. There is medication and support such as pumps to help. But it's crucial to discuss any side effects with your consultant to find out what support is available

Bri

User
Posted 10 Aug 2017 at 11:55

Hi John

I'm at the same stage as you having undergone a robotic-assisted prostatectomy late July this year.  I have just had my catheter removed 4 days ago and am leaking like a sieve, but I am assured that this will ease in time.  I hope all goes well with your recovery.

 

Graham (C0xy)

User
Posted 13 Aug 2017 at 16:16
Hi John,

I had my prostate removed on 7th June this year with the robotic at Preston. The op went well and the surgeon was able to spare the nerves.. Being diagnosed at 54 by sheer chance really the option to remove the prostate seemed like the only one.

Initially,I was leaking every time I tried to do anything. Sitting on the sofa or at night was not too bad but it didn't take much to make me leak. Walking down the stairs whilst trumping and laughing was the perfect storm. 😀

Initially,I,was getting through 3 or 4 pads during the day but now I'm down to one during the day and one at night with neither really becoming appreciably wet. Don't get me wrong. If I try to lift to much or cough unexpectedly then I still do,leak but it's fairly easily manageable now. I'm back at work but working reduced hours due to the commute.

My main issue is with fatigue. I leave for work around half six and by half one I'm dead on my feet. Also,after a three day week I'm pretty well wiped out all weekend. I keep pushing to improve. I get a train to work and often walk the two and a half miles home from the station so I'm getting there.

I'm taking cialis, 20 mg twice a week and don't seem to have many problems in the bedroom although I think my drive has dropped off a bit. It all seems to have to be a little more planned but my wife is considerate and supportive.

So,I guess my main message John is keep plodding on. You will get there but it is a gradual thing and I think that thing too hard and worrying about it too much is just counterproductive. Keep up with the exercises and you will get there in the end.

May I wish you lots of luck on your journey.

Andy

User
Posted 21 Aug 2017 at 14:54
Thanks for all your replies and encouragement. My main problem, 5 weeks after the operation, is having virtually no bladder control. I am doing pelvic floor exercises 6 times a day, but when I rise to stand from a sitting position, my bladder empties uncontrollably. I am getting through about 6 pads a day. Is this normal at this stage and has anyone any hints on how I can better help myself? Best wishes to all.
User
Posted 21 Aug 2017 at 16:53
Hello again John.

Can I ask whether you are incontinent during the night?

In answer to your question about leaking while standing up I had the same problem. In my case I gradually got over it by standing in stages. I would move as far forward as possible, then bend forward and stay bent forward as I gradually stood on my feet. I would then wait a bit (still bent forward) and then gradually begin to straighten up while trying to tense the muscles to stop any leakage. Having straightened up I would wait a while before attempting to walk. This was a gradual process that wasn't always successful but bit by bit things improved.I'm not sure there is a right or wrong way to deal with this, but like you I had no control but after about 6 months things were pretty good. Just over 2 years down the line I still use the lightest pad during the day as insurance against the odd unplanned leak but am doing everything I did before.

All the best and keep in touch as anything you can add about your progress can be so helpful to others and will help others to help you.

Kevan

User
Posted 21 Aug 2017 at 19:46
Thanks Kevan, I am so grateful to you for taking so much trouble to reply. I shall certainly try your suggestion for standing up. Advice of this kind is just what I need. In answer to your question about night time, I find that I am normally woken up in the night by something (bladder?) and I can sit on the edge of the bed without losing control, but then I have the same problem when I stand. I have been using a plastic bottle before standing up to go to the loo, but that's cheating! I will try your technique for standing up! Thanks very much again! John GB
User
Posted 21 Aug 2017 at 21:54
Hi John

Just a quick note - don't think that anything is cheating. You have to try anything as it's your life so give anything a go but there are not always quick fixes. It's still relatively early days yet and we all mend at our own rate. I found that when using the pads got me down a bit I started using the Conveen sheaths which I found a great relief if out all day. But a step at a time.

All the best and stay positive.

Kevan

User
Posted 22 Aug 2017 at 10:28
Thanks, Kevan. Wise words, I'm sure. We are off on Thursday to spend a week in an apartment in Kefalonia, to get some sunshine. A logistical challenge, but I'm sure we'll enjoy it!

John

User
Posted 02 Sep 2017 at 09:23
My wife and I have just spent a great week in the sun on a Greek island, seven weeks after my prostatectomy. I am still incontinent, of course and was a bit worried about the logistics of travel and sleeping in a holiday apartment, but it all went very well. I feel a lot better for it. I'm just posting this in case anyone else would benefit from knowing that it can be done and would appreciate learning from my experience.

Best wishes to all.

John GB

User
Posted 02 Sep 2017 at 13:39
Hi John

So pleased that the holiday went well for you and that you feel better for it.

Are things improving for you ? I do hope so but you have the right mind set which is to just get on with things by whatever means possible.

We are just getting ready for a week in New York and fly out on Monday so looking forward to that.

September 24th is the Distinguished Gentlemen's Ride and at the moment there are 24 of us taking part in the Swindon ride in aid of Prostate Cancer awareness and men's mental health issues. I have been preparing my gentlemanly apparel so just hoping it doesn't rain on the day.

All the very best with your progress.

Kevan

User
Posted 04 Sep 2017 at 21:58
Thank you, Kevan. I do hope you have a great time in New York. Best of luck also with the Distinguished Gentlemen's Ride. I had not heard of it, but a little research tells me that there is one close to us, in Derbyshire. I don't think I could sit on a saddle at the moment, though, padded up as I am.

I still have little or no control over the waterworks and get through 4 to 6 pads a day. Usually, they are saturated. The most troublesome thing is that I never can go to the loo normally. All my urine is caught by my pads or by my use of a bottle. I keep on with the pelvic floors, but am very frustrated by my inability to control the flow. Patience is very difficult!

All the best,

John GB

 
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