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User
Posted 24 May 2016 at 09:15

hi, I had just turned 55 and I was given the bad news that i had prostrate cancer at the end of March. I am having the prostate removed on the 17th June as the doctor believes this is the best option and to be honest there does not seem to be a option which is any better than any other. I am a very private person who tries to keep things to myself so dealing with this is not easy for me. I live and work in Spain and the only people who know here are my close family as I do not see how telling everyone will make it any better for me and I hate people feeling sorry for me. I am a vey fit person who runs 6k 4 or 5 times a week and to say this is a shock to me would be an understatement.


 


One question I do have is which Incontinence pads do you think I should use if and when I need them and what level? The reason I ask is where I live these pads cost a lot of money compared to the UK so I was thinking of buying some in the UK next week when I visit. Any advice in what products to buy would be a great help.

User
Posted 06 Jul 2016 at 19:32
S

Still early days and no magic formula to know how soon recovery will happen.
I was almost dry 4 days post catheter removal did my PFES all the time. Subsequent operations left me leaking about 200 ml a day now down to about 10ml but I have not done any PFEs since mid Jan, they cost nothing to do and the first part of the exersise does flex the penis so "may" have an influence on erectile dysfunction recovery. Conveen sheaths as K said are a life changer but urologists are not keen on there use so soon after surgery,they think it makes you lazy,I think they gave me the confidence to hang on that bit longer.

Chris your friend who uses 5/6 pads a day 2 years post op should have been offered the sling or AUS etc. The number of pads a day does not really give an indication of how much he is leaking. I know someone who is 16 years post surgery leaks 170 ml a day and does not want any further surgery.

Thanks Chris

User
Posted 24 May 2016 at 11:38

Hi. Good luck with the operation. I was very lucky with incontinence but immediately post surgery word Tena pant inserts level 3 which would take a whole wee during the night surprisingly. During the day I wore men's ID incontinence pads level 2 which were superb. Look them up.
Best wishes Chris


If life gives you lemons , then make lemonade
User
Posted 24 May 2016 at 11:47

Make sure you have started doing your pelvic floor exercises on a regular basis to help you gain continence after the op.

I bought the ones from Asda...think they were tena, they were also very discreet. Hopefully you wont need them for long

Bri

User
Posted 24 May 2016 at 12:15

On this website under ' publications ' is a pelvic floor exercise download. I was told to do them before , during Catheter and after. I was quickly continent but I really think it's down to luck and surgeon skill.


If life gives you lemons , then make lemonade
User
Posted 24 May 2016 at 12:49

I was also advised by my consultant to do the exercises before the operation. When I went for my pre-op cystoscopy he asked me to do them whilst he was in there so that I could see the effect on the screen!


Immediately after op (few days) used Sainsburys incontinence pants at night (but didn't really need them but they just gave me comfort that all was "safely contained") and Tena Pads during day


Tena Man Pads medium are what I now use  (9 weeks post op) - again really for peace of mind as I am hardly leaking anything at all... £4 for 10 from Sainsburys - as Brian says these are very discreet - no-one will know you are wearing them - except you of course!


 

Edited by member 24 May 2016 at 12:52  | Reason: Not specified

User
Posted 24 May 2016 at 14:01

Best way to describe the exercise is to pretend you are stopping yourself peeing mid flow....

Bri

User
Posted 24 May 2016 at 17:37

Hi, John's surgeon said that pelvic floor exercises were a waste of time for most men - but I made him do them anyway. Apart from Chris's surgeon, most say that you must not do PFEs while the catheter is in. Like everything else, it varies from one doctor to the next!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 May 2016 at 14:47

Hi..


I had an open radical prostatectomy and was in hospital for three nights... the first 24 hours in recovery (intensive care). (Consultant said it would be 4 - 5 nights - so I think they tell you the worst then see how you are getting on).


I believe that laparoscopic (either manual or robotic) surgery may result in a shorter hospital stay.


My Consultant and GP arranged for me to have 6 weeks off work - but I probably could have gone back somewhat earlier (office based) - in truth I was doing lot of work (computer/phone based) from home. 


I guess that if I was in a manual job then the 6 week recovery period would certainly be needed.


You have to remember that this is major surgery - my consultant when preparing me for it likened it to a caesarian!


And lifting.... well I was told that for the first few weeks I could lift a kettle of water for a cup of tea but not much more!


Take care - hope it all goes well


KRO...

User
Posted 27 May 2016 at 17:08
I had robotic surgery with lymph nodes and came out the next day after walking 25 laps of the ward. I took it very easy in the first 2 weeks. I' m now in week 4 and am beginning to get back to normal, but no heavy lifting for another 3 weeks . I' m still very tender underneath.
User
Posted 05 Jul 2016 at 21:05

Really glad your op went well. Yes the Gleason 9 is more worrying but the fact it was contained is very good , and hopefully all removed.
It's far far too soon to fret about the incontinence although I know it's unpleasant. I was dry almost immediately as were quite a few new members. However an equal number were and still are incontinent. It seems to be luck of the draw. The evidence on pelvic floor exercises is fragmented , however I would say keep at them as I don't think they can do any harm. Try not to panic or be too alarmed , and rest yourself. My fingers are crossed for you


If life gives you lemons , then make lemonade
User
Posted 06 Jul 2016 at 13:26

Hi, I have no experience of incontinence or a RP as I am a HT /RT man but have a friend that had a RP two years ago yesterday and is still leaking on a daily basis and gets through about 5/6 pads each day.

He still does pelvic floor excercise said every day religiously even though his leaking has got no better for the last twelve months. His GP and the urology clinic have told him there is nothing else that they can do about it and he is left to suffer at this current level, not sure if I could cope with that and glad I have not had the op.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jul 2016 at 17:36
Hi Kev
Very early days yet.I had no control after having the catheter removed and to get totally under control took me about 5 months.I just used a combination of pads and external catheters to get on with life - basically whatever it takes.Yes there were frustrations and discomfort along the way but every day was a new day with a blank page to be written on so forget yesterday and the problems it brought but just rejoice in each little victory. This is just my experience and we are all different but hopefully it will all come right but it's a question of the timescale.I have to say that I found the Conveen sheath/bag system to be a great help when driving long distances and being out and about all day.
Hope it all goes well.

Kevan
User
Posted 08 Jul 2016 at 13:52

K


You just weigh the wet pads,better to get a separate pair of scales, i.e do not use the kitchen scales, better still if there are self zeroing electronic scales. Water is, one gram equals one ml, so weigh a dry pad to know the weight, then when you wet a pad get the weight and do the maths.Wet minus dry.


My incontinence department gives out a form with fluid in fluid out and leakage. A Boots travel urine bottle has a measuring scale on the side to tell how much output, so that can be recorded. Having a structure I also measure my flow rate, bottle in one hand, watch in the other, fluid divided by time equals flow rate. 450 mls in 30 secs equals 15mls /sec.


My consultant asked how I knew my flow rate and was quite surprised how accurate it was compared to the hospital flow rate machine.


A tenna2 will hold around 750 ml of water as long as it is not squeezed I don't think it would hold that much urine in a practical situation.


Another tip stand in the shower with a full bladder and a pad in your underwear and just let it go,it will give you an idea what might happen if caught short and how well it will or won't hold the leak. Also carry a Boots urine bottle in the car and a towel to cover your modesty if caught in traffic on the M1 next to a coach full of people.


Thanks Chris

Edited by member 08 Jul 2016 at 16:32  | Reason: Not specified

User
Posted 08 Jul 2016 at 18:09

All really useful posts but just to be clear Siam, you don't need to do any of these things right now - you are in the earliest stage of recovery where your muscles (which have been cut sliced and pushed around) are just settling down and your brain is re-learning how to control them. The guys who measure leaks are those who never recovered continence after the op rather than in your situation. Generally, they say that you should aim to have regained bladder control by 6 months although many would aim for 10-12 weeks because they want to get back to work.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jul 2016 at 08:44
L

Our Urology and incontinence service starts monitoring input ,output, leakage, bladder voiding and flow rates from about 6 weeks and carry on for the first year at three monthly intervals. They issue a form to record 3 consecutive days of fluid movement.

Our robot was only installed about two and a half years ago and the monitoring may be more about gathering data to analyse outcomes.

Thanks Chris



User
Posted 09 Jul 2016 at 09:03

Yes but Siam only had his catheter removed 4 days ago ... It might be a tad early to start?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jul 2016 at 11:28

I would say just to monitor it for now. Lots of stitching etc. If you are over doing it or straining or overfilling your bladder it can cause tiny tears.
If you start getting pure blood , time to go to A and E
Chris


If life gives you lemons , then make lemonade
User
Posted 19 Jul 2016 at 16:06
S

Don't start to panic I was originally 99 percent dry after 4 days so not sure what the "norm" is. There could be numerous reasons scab or debris in the sphincter or urethra that is keeping the urethra open. A bit to much activity too soon. Possibly what and when you are drinking. Don't stop drinking, that will not be an overall benefit. Some guys limit what they drink at night.

It is only a couple of weeks so still early days. How wet are your pads in the day and when do you leak.

Thanks Chris
User
Posted 19 Jul 2016 at 17:17

Possible explanations:
- you have reintroduced caffeine too soon
- the bladder is irritated - are you plenty of drinking cranberry juice?
- you are sleeping more heavily as your body starts to heal
- you are overdoing things

My guess would be that all four apply. Your body is having to relearn bladder control, just as it did when you were a toddler. It takes an enormous amount of concentration at this stage, which is very tiring. When you are tired, bladder control falls apart; if you have ever had children you may remember when they were first potty trained - things would be okay as long as you reminded them to go to the loo regularly and even then, if they got engrossed in a toy or a TV programme, big puddles and wet pants. That's where you probably are right now - slow down, cut out the caffeine (or worse) and rest more perhaps!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jul 2016 at 09:07

as for cranberry juice, do you think it is good to drink as on some websites it says it can make incontinence worse?

User
Posted 23 Jul 2016 at 09:56
S

Although not leaking as much as you in this hot spell of weather I have been drinking alot more fluids including 1.5 litres of coke,coffee and lots of water each day and now only getting minimal leakage.

I think the idea of cranberry juice is to settle any bladder irritation that might be causing the incontinence.

Thanks Chris

User
Posted 24 Jul 2016 at 10:20

It's only just about 5 weeks post op Siam isn't it. I would think you were still healing


My Husband has turmeric tablets and has done for some time now, ever since we saw it recommended on here.


I also add powdered turmeric to spag bol and curries so he gets a bit extra. Haven't tried to persuade him to do the turmeric drink though!


Does cranberry juice increase incontinence. Well I'm sure I read somewhere that it increases urination so probably would increase incontinence but that has to weighed by the good it is supposed to do.


Good luck Monday Week. I shall be on holiday so unlikely to have wifi to wish you good luck at the time.


Sandra


 


PS. Just had another look at where I saw the bit about cranberry juice so have copied it for you in case it helps


"CRANBERRY JUICE"


How does it work?


People used to think that cranberry worked for urinary tract infections by making the urine acidic and, therefore, unlikely to support the growth of bacteria. But researchers don't believe this explanation any more. They now think that some of the chemicals in cranberries keep bacteria from sticking to the cells that line the urinary tract where they can multiply. Cranberry, however, does not seem to have the ability to release bacteria which are already stuck to these cells. This may explain why cranberry is possibly effective in preventing urinary tract infections, but possibly ineffective in treating them.

Cranberry, as well as many other fruits and vegetables, contains significant amounts of salicylic acid, which is an important ingredient in aspirin. Drinking cranberry juice regularly increases the amount of salicylic acid in the body. Salicylic acid can reduce swelling, prevent blood clots, and can have antitumor effects.


********


 

Edited by member 24 Jul 2016 at 10:39  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 24 Jul 2016 at 14:56
Have a look at this thread

http://community.prostatecanceruk.org/posts/t10704-Trevor-and-his-Turmeric#post129265
Show Most Thanked Posts
User
Posted 24 May 2016 at 11:38

Hi. Good luck with the operation. I was very lucky with incontinence but immediately post surgery word Tena pant inserts level 3 which would take a whole wee during the night surprisingly. During the day I wore men's ID incontinence pads level 2 which were superb. Look them up.
Best wishes Chris


If life gives you lemons , then make lemonade
User
Posted 24 May 2016 at 11:47

Make sure you have started doing your pelvic floor exercises on a regular basis to help you gain continence after the op.

I bought the ones from Asda...think they were tena, they were also very discreet. Hopefully you wont need them for long

Bri

User
Posted 24 May 2016 at 12:12

Thanks for the replies. As for pelvic floor exercises my doctor says there is no point before the op? Seems to be a lot of different opinions as what is best. Can you send me a link to find the best pelvic floor exercises to do. I really hope I do not need pads for long.

User
Posted 24 May 2016 at 12:15

On this website under ' publications ' is a pelvic floor exercise download. I was told to do them before , during Catheter and after. I was quickly continent but I really think it's down to luck and surgeon skill.


If life gives you lemons , then make lemonade
User
Posted 24 May 2016 at 12:49

I was also advised by my consultant to do the exercises before the operation. When I went for my pre-op cystoscopy he asked me to do them whilst he was in there so that I could see the effect on the screen!


Immediately after op (few days) used Sainsburys incontinence pants at night (but didn't really need them but they just gave me comfort that all was "safely contained") and Tena Pads during day


Tena Man Pads medium are what I now use  (9 weeks post op) - again really for peace of mind as I am hardly leaking anything at all... £4 for 10 from Sainsburys - as Brian says these are very discreet - no-one will know you are wearing them - except you of course!


 

Edited by member 24 May 2016 at 12:52  | Reason: Not specified

User
Posted 24 May 2016 at 14:01

Best way to describe the exercise is to pretend you are stopping yourself peeing mid flow....

Bri

User
Posted 24 May 2016 at 17:37

Hi, John's surgeon said that pelvic floor exercises were a waste of time for most men - but I made him do them anyway. Apart from Chris's surgeon, most say that you must not do PFEs while the catheter is in. Like everything else, it varies from one doctor to the next!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 May 2016 at 12:27

again thank you for the replies.It appears there are different opinions about everything regarding PC. A friend of mine in the UK has also been diagnosed with PC and when we talk there are so many different things we are being told. You would think we had different cancers.


Can I ask how long did you spend in hospital and how long before felt well enough to go back to work?


I have been told I will have the op on a Friday and will leave hospital on the next Wednesday whilst he has been told he will be in for 2 days? I have private health insurance and he will be on the NHS so maybe this is something to do with it. My doctor here in Spain was a little taken back when I told him how long my friend expected to be in hospital.


i have been told I should be okay to return to work within two weeks of leaving hospital whist he is being told about 6 weeks?


We are both about the same age, both healthy (aprt from PC) and our jobs are not manual so there is no lifting for us.

Edited by member 27 May 2016 at 12:42  | Reason: Not specified

User
Posted 27 May 2016 at 14:47

Hi..


I had an open radical prostatectomy and was in hospital for three nights... the first 24 hours in recovery (intensive care). (Consultant said it would be 4 - 5 nights - so I think they tell you the worst then see how you are getting on).


I believe that laparoscopic (either manual or robotic) surgery may result in a shorter hospital stay.


My Consultant and GP arranged for me to have 6 weeks off work - but I probably could have gone back somewhat earlier (office based) - in truth I was doing lot of work (computer/phone based) from home. 


I guess that if I was in a manual job then the 6 week recovery period would certainly be needed.


You have to remember that this is major surgery - my consultant when preparing me for it likened it to a caesarian!


And lifting.... well I was told that for the first few weeks I could lift a kettle of water for a cup of tea but not much more!


Take care - hope it all goes well


KRO...

User
Posted 27 May 2016 at 17:08
I had robotic surgery with lymph nodes and came out the next day after walking 25 laps of the ward. I took it very easy in the first 2 weeks. I' m now in week 4 and am beginning to get back to normal, but no heavy lifting for another 3 weeks . I' m still very tender underneath.
User
Posted 05 Jul 2016 at 17:22

well I have had the op 17 days ago and things really were not as bad as I feared. No pain at all just a little discomfort. Had my results from the test on the prostate yesterday and where the biopsy showed a Gleeson level of 7 the result came back at 9 which worries me. It was only in the right side and classed as T2B. The doctor said they will need to monitor the next few blood test results to see if the PSA rises but never seem too worried by this..


The only problem at the moment is incontinence which hopefully will get better as I only had the bag removed yesterday.At the moment I don't have any control over it. Is this normal for the first day or two and when should it improve?


 

Edited by member 05 Jul 2016 at 17:34  | Reason: Not specified

User
Posted 05 Jul 2016 at 21:05

Really glad your op went well. Yes the Gleason 9 is more worrying but the fact it was contained is very good , and hopefully all removed.
It's far far too soon to fret about the incontinence although I know it's unpleasant. I was dry almost immediately as were quite a few new members. However an equal number were and still are incontinent. It seems to be luck of the draw. The evidence on pelvic floor exercises is fragmented , however I would say keep at them as I don't think they can do any harm. Try not to panic or be too alarmed , and rest yourself. My fingers are crossed for you


If life gives you lemons , then make lemonade
User
Posted 06 Jul 2016 at 13:26

Hi, I have no experience of incontinence or a RP as I am a HT /RT man but have a friend that had a RP two years ago yesterday and is still leaking on a daily basis and gets through about 5/6 pads each day.

He still does pelvic floor excercise said every day religiously even though his leaking has got no better for the last twelve months. His GP and the urology clinic have told him there is nothing else that they can do about it and he is left to suffer at this current level, not sure if I could cope with that and glad I have not had the op.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jul 2016 at 17:36
Hi Kev
Very early days yet.I had no control after having the catheter removed and to get totally under control took me about 5 months.I just used a combination of pads and external catheters to get on with life - basically whatever it takes.Yes there were frustrations and discomfort along the way but every day was a new day with a blank page to be written on so forget yesterday and the problems it brought but just rejoice in each little victory. This is just my experience and we are all different but hopefully it will all come right but it's a question of the timescale.I have to say that I found the Conveen sheath/bag system to be a great help when driving long distances and being out and about all day.
Hope it all goes well.

Kevan
User
Posted 06 Jul 2016 at 19:32
S

Still early days and no magic formula to know how soon recovery will happen.
I was almost dry 4 days post catheter removal did my PFES all the time. Subsequent operations left me leaking about 200 ml a day now down to about 10ml but I have not done any PFEs since mid Jan, they cost nothing to do and the first part of the exersise does flex the penis so "may" have an influence on erectile dysfunction recovery. Conveen sheaths as K said are a life changer but urologists are not keen on there use so soon after surgery,they think it makes you lazy,I think they gave me the confidence to hang on that bit longer.

Chris your friend who uses 5/6 pads a day 2 years post op should have been offered the sling or AUS etc. The number of pads a day does not really give an indication of how much he is leaking. I know someone who is 16 years post surgery leaks 170 ml a day and does not want any further surgery.

Thanks Chris

User
Posted 08 Jul 2016 at 11:26

Chris,


 


thanks for taking time to reply. Can you tell me how you can say how much people leak after. When you say you know someone who still leaks 170ml a day, how do they know the amount or are they not using pads.


 


kind regards


 


Kev.

User
Posted 08 Jul 2016 at 13:52

K


You just weigh the wet pads,better to get a separate pair of scales, i.e do not use the kitchen scales, better still if there are self zeroing electronic scales. Water is, one gram equals one ml, so weigh a dry pad to know the weight, then when you wet a pad get the weight and do the maths.Wet minus dry.


My incontinence department gives out a form with fluid in fluid out and leakage. A Boots travel urine bottle has a measuring scale on the side to tell how much output, so that can be recorded. Having a structure I also measure my flow rate, bottle in one hand, watch in the other, fluid divided by time equals flow rate. 450 mls in 30 secs equals 15mls /sec.


My consultant asked how I knew my flow rate and was quite surprised how accurate it was compared to the hospital flow rate machine.


A tenna2 will hold around 750 ml of water as long as it is not squeezed I don't think it would hold that much urine in a practical situation.


Another tip stand in the shower with a full bladder and a pad in your underwear and just let it go,it will give you an idea what might happen if caught short and how well it will or won't hold the leak. Also carry a Boots urine bottle in the car and a towel to cover your modesty if caught in traffic on the M1 next to a coach full of people.


Thanks Chris

Edited by member 08 Jul 2016 at 16:32  | Reason: Not specified

User
Posted 08 Jul 2016 at 18:09

All really useful posts but just to be clear Siam, you don't need to do any of these things right now - you are in the earliest stage of recovery where your muscles (which have been cut sliced and pushed around) are just settling down and your brain is re-learning how to control them. The guys who measure leaks are those who never recovered continence after the op rather than in your situation. Generally, they say that you should aim to have regained bladder control by 6 months although many would aim for 10-12 weeks because they want to get back to work.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jul 2016 at 08:44
L

Our Urology and incontinence service starts monitoring input ,output, leakage, bladder voiding and flow rates from about 6 weeks and carry on for the first year at three monthly intervals. They issue a form to record 3 consecutive days of fluid movement.

Our robot was only installed about two and a half years ago and the monitoring may be more about gathering data to analyse outcomes.

Thanks Chris



 
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