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User
Posted 24 May 2016 09:15:32(UTC)

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 July 2016 19:32:17(UTC)
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

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User
Posted 24 May 2016 11:38:41(UTC)

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
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User
Posted 24 May 2016 11:47:32(UTC)

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

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User
Posted 24 May 2016 11:38:41(UTC)

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
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User
Posted 24 May 2016 11:47:32(UTC)

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

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User
Posted 24 May 2016 12:12:17(UTC)

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 12:15:51(UTC)

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
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User
Posted 24 May 2016 12:49:57(UTC)

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!

 

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User
Posted 24 May 2016 14:01:34(UTC)

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

Bri

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User
Posted 24 May 2016 17:37:21(UTC)

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


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User
Posted 27 May 2016 12:27:35(UTC)

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.

User
Posted 27 May 2016 14:47:07(UTC)

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...

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User
Posted 27 May 2016 17:08:07(UTC)
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.
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User
Posted 05 July 2016 17:22:07(UTC)

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?

 

User
Posted 05 July 2016 21:05:01(UTC)

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
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User
Posted 06 July 2016 13:26:16(UTC)

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

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User
Posted 06 July 2016 17:36:08(UTC)
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
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User
Posted 06 July 2016 19:32:17(UTC)
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

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User
Posted 08 July 2016 11:26:31(UTC)

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 July 2016 13:52:40(UTC)

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

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User
Posted 08 July 2016 18:09:32(UTC)

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


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User
Posted 09 July 2016 08:44:12(UTC)
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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User
Posted 09 July 2016 09:03:04(UTC)

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


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User
Posted 13 July 2016 10:17:49(UTC)

thank you all for taking to reply. Just over a week since catheter removal and still leaking but I think last night was the best night so far so hopefully improving. One thing today is I am seeing blood in my urine. Its not a lot, just pink and only noticed it late yesterday and this morning Not sure if I should go and see doctor or just monitor it.

User
Posted 13 July 2016 11:28:26(UTC)

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
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User
Posted 19 July 2016 14:46:33(UTC)

I thought things were getting better with the incontinence. Have been using 2 tena pads level 2 in the day and one level 3 at night. Today seems as bad as the first day when the catheter was removed having used 3 pads already and this morning the overnight pad was soaked.This is the first time the over night pad was this wet. Please tell me this is normal and nothing to worry about.

User
Posted 19 July 2016 16:06:06(UTC)
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
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User
Posted 19 July 2016 17:07:40(UTC)

the day pads were not soaked but today they have been.The night pad was never soaked until this morning and I had been to the toilet a couple of times in the night. The leaks are when i move. As long as I could get the toilet within about 30 to 40 seconds there was no major leak. Today I do not have time to make it to the toilet.

User
Posted 19 July 2016 17:17:41(UTC)

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


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User
Posted 23 July 2016 09:07:10(UTC)

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

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User
Posted 23 July 2016 09:56:57(UTC)
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

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User
Posted 24 July 2016 10:01:56(UTC)

well apart from the incontinence so far the process so far has not been as bad as I feared, no pain at all just a little tender at times.The incontinence does get to me at times as I have always been very active and now the more I move the worse the leaks are so I tend to do very little.

Having first post op blood test a week Monday and see the surgeon a week Wednesday so fingers crossed for good news. one question, has anyone any opinion about taking Turmeric tablets? A friend of mine swears by their benefits for all types of health problems including help fighting cancer.

User
Posted 24 July 2016 10:20:42(UTC)

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.

********

 

We can't control the winds - but we can adjust our sails
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User
Posted 24 July 2016 14:56:03(UTC)
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User
Posted 04 August 2016 08:25:43(UTC)

well had my first blood test results yesterday (just over 6 weeks post op) and PSA read as 0.008 which the doctor said was very, very good for the 1st result so I am happy so far.

 

She also referred me to a therapist to help with the incontinence which is my biggest problem at the moment. This is six seasons of exercises, has anyone done anything like this before and if so what does it consist of?

She also gave me a course of tablets to help me with needing to pee so often.

 

Another test in 3 months so fingers crossed.

 

Thank you to all who have taken time to reply in the past, you have all been a great help.

User
Posted 05 August 2016 21:28:13(UTC)

S

Good news on the PSA hope it continues that way. I would be interested to know what exercises your therapist gives you to do. 

Thanks Chris

User
Posted 06 September 2016 19:10:09(UTC)

Originally Posted by: Online Community Member

S

Good news on the PSA hope it continues that way. I would be interested to know what exercises your therapist gives you to do. 

Thanks Chris

 

sorry about the delay in replying. Mainly it has been 2 times a week about 40 minutes a time of having all kinds of things stuck up my back passage whilst I constrict my pelvic floor muscles. The main part is electronic  simulation which lasts for about 15 minutes . Also lots of breathing exercises. Not great but I must say that my incontinence has really improved over the past two weeks. I can now go all day and night with only one pad and at night I am completely dry. The only time I leak now is when I stand or move around for a long time but it is nowhere near as bad as before.

 

One problem I have now is a weak urine flow. Should I have this checked out and what could be done to make it better?

 

 

User
Posted 06 September 2016 19:32:23(UTC)
S

Thanks for the reply, anything that works is worth considering. If you have read my profile you will know what caused my slow flow. It is worth getting it checked as weak flow and not voiding the bladder can lead to water infections and UTIs.

What tablets were/ are you on to decrease the frequency as some tablets should not be used if you have a slow flow rate.

In our area the incontinence nurses are able to do a flow test and bladder scan, or the district nurse service can also do it.

Thanks Chris
User
Posted 04 November 2016 18:22:04(UTC)

had results from 2nd blood test and all OK. I have had a very weak flow since the op so the doctor inserted a thin catheter to see if there was any blockage. She said all seemed fine but there must of been something blocking the pipework as from the next day I am now peeing at full flow. 

 

The joy of being able to do this after 4 months is heavenly

 

Almost completely dry before she used this catheter but now getting a little leakage but hopefully this will get better with time.

 

Next test is after Christmas so hopefully things will remain OK:

User
Posted 04 November 2016 19:58:06(UTC)
S

Great news on the bloods.

I had some similar experiences where after a camera or the pressure test probes were inserted I would be back to a full flow for a few days, then it would start to drop again. My consultant thought my Clip and then the scar tissue is what made me regain my continence so quickly. Just got a copy of my last clinic vist, the flow rate is reported as 67 mls/ second, it should have read 6-7 mls/ sec.

Thanks Chris
User
Posted 07 November 2016 18:03:52(UTC)

seems to be a lot of misinformation around regarding what is classed as an undetectable PSA level. Any one know the right answer?

User
Posted 07 November 2016 19:41:25(UTC)
S

My understanding is, less than 0.1 is undetectable, I was referred to my consultant when mine breached the threshold of 0.1,but some hospitals do not act until 0.2 is reached.

Thanks Chris
User
Posted 07 November 2016 20:51:46(UTC)

Yes, the NHS defines it as less than 0.1

Defining undetectable is different to defining 'biochemical recurrence' (0.2 or three successive rises and/or a doubling time of less that 6 months) or defining the point at which treatment would be reintroduced after radical treatment and salvage / adjuvant treatment have all failed. In many hospitals this would be 2 but some say 10 or (in Bri's hospital) even 20!

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


User
Posted 18 June 2017 11:55:58(UTC)

Just a quick update. Saw surgeon in February and all was well so she said not to see her again for six months unless i had any problems. Was almost totally dry and feeling great.

Then a few weeks back I was going to the toilet 6 times a night and was so thirsty while in bed. I went to my normal doctor and it turns out i had a urine infection for which I was giving a drip and a course of antibiotic tablets to clear. After four days I had a follow up test and was told it had cleared but was told to go back to the surgeon to be checked over.

The surgeon said my flow was weak so again I had a thin catheter inserted and she told me to return the next week with another urine sample. When I picked the results up it was positive again and as my surgeon is away for a week i returned to the doctor who has put me on anther week supply of antibiotics.

To be honest I am feeling a bit ****** off as everything was going so well or so it seemed.

Has anyone had anything similar and did it clear up?

 
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