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User
Posted 17 Jun 2018 at 17:58

I found out i had prostate cancer on the 30th April which by the way was my birthday. I had locally advanced cancer 4+3 and 3+4 with a gleason score of 7 and my PSA was 7.6. My bone scan came back clear but my MRI showed a bump on the left side of the prostate with 23% cancer on that side and 52% on my right side. I had a choice of radio therapy or robotic surgery and after discussing my options with the surgeon i decided on the surgery with the option of radio therapy if i needed follow up treatment.I had my surgery done on Thursday 14th June 2018 at 9am and was back home on Friday 15th 6pm. I have a catheter in for a week which is not as bad as i thought it would be also a lot of swelling down below my tummy is sore but the level of pain considering its a major operation is not bad at all. At the moment i'm waiting for my first bowl movement and can't wait to get that out of the way, hopefully the cancer is confined to the prostate area and i get the all clear in a few weeks and will be able to put this very tramatic time behind me. 

User
Posted 20 Jun 2018 at 07:07

Eddy


My hospitial gave me some pads to go home post TWOC and my incontinence service had already sent me 120 Tenna 2 before I had surgery. Most chemists sell a urine bottle that holds a litre, has a cap to seal the bottle and a very wide neck. I had a bath towel on the car seat in case of leaking on the way home from the TWOC and I did. Once recovered from the op and  back to work l had the urine bottle in the car and a towel to cover my modesty if I needed to use it in an emergency, only needed it a couple of times. Leakage past the Catheter whilst passing a motion is quite common. 


Thanks Chris

User
Posted 26 Jun 2018 at 07:44
Don't worry. I was in the same situation a year ago. But 6 months later I was completely dry. Being dry at night is a good sign.
User
Posted 02 Jul 2018 at 10:49
Four weeks ago today I had my Retzius-sparing prostatectomy. The surgeon used a supra-pubic catheter which comes out of a hole just above the penis. That was removed after ten days and I was immediately continent. I have had a handful of leakages, but I bought just one box of 14 of the smallest Tena Light pads and there must still be four left, which will probably remain unused.

Six out of the seven keyhole wounds have healed well, three still have scabs on, but one became infected and I have just finished antibiotics which sorted it.

I only bled for two days into the bag after the op. but I was surprised during week three to start urinating both red and brown blood, and passing blood clots. I suppose that was my innards healing. No problems in that regard now.

My formerly magnificent penis, “The Ultimate Weapon”, seems to have gone into hibernation, and daily doses of Tadalafil 5mg have so far not tempted him to wake from his slumber! We live in hope!

Best wishes for your recovery Eddy.

Cheers, John
User
Posted 17 Jun 2018 at 17:58

I found out i had prostate cancer on the 30th April which by the way was my birthday. I had locally advanced cancer 4+3 and 3+4 with a gleason score of 7 and my PSA was 7.6. My bone scan came back clear but my MRI showed a bump on the left side of the prostate with 23% cancer on that side and 52% on my right side. I had a choice of radio therapy or robotic surgery and after discussing my options with the surgeon i decided on the surgery with the option of radio therapy if i needed follow up treatment.I had my surgery done on Thursday 14th June 2018 at 9am and was back home on Friday 15th 6pm. I have a catheter in for a week which is not as bad as i thought it would be also a lot of swelling down below my tummy is sore but the level of pain considering its a major operation is not bad at all. At the moment i'm waiting for my first bowl movement and can't wait to get that out of the way, hopefully the cancer is confined to the prostate area and i get the all clear in a few weeks and will be able to put this very tramatic time behind me. 

User
Posted 17 Jun 2018 at 20:15

Eddy


If you are not already taking some form of laxative, I would speak to someone on your medical team for advice, passing a hard motion past your new urethral joint is not ideal. People on here have been advised to double their laxative dose ,but get advice from someone who is medically qualified. Keeping active will help shift that first motion, but don't over do it. 


Hope all goes well.


Thanks Chris

User
Posted 18 Jun 2018 at 11:51

Happy days😊 It's amazing how good these victories make you feel. Keep up the good work but don't rush things.


All the best 


Kevan 

User
Posted 18 Jun 2018 at 12:16
Best of luck with your recovery Eddy. Please keep us up to speed with the progress of your recovery if you can.

Cheers, John
User
Posted 19 Jun 2018 at 23:14

Hi Eddy please to hear everything is going well.


I had my catheter in for 9 weeks as I had a leak at the bladder neck and needed 4 cystograms before it could be removed.


Anyway when it was removed I had to go back to the ward to drink fluids and ensure there was no fluid retention. I was so pleased to get the damn thing out and was so set on not having any retention, I drank and drank at least a couple of pints of water.


'Perfect no fluid retention there' said the nurse 'you're free to go home'.  Home is 13 miles away from the hospital and traffic was very busy in the rush hour.


Needless to say I was busting !  luckily there was a Morrisons supermarket a mile down the road and I popped in there for a bucket. Sat in the back seat all the way home - so glad of that bucket.


If you live a fair distance I'd recommend taking some provisions


Best Wishes Rich


 

User
Posted 26 Jun 2018 at 08:10

HI there,


I was in a similar position to you post catheter removal but the good news is that you are dry when sitting or lying down and at night. I found that the act of getting up, bending, lifting and walking started the flood. This is basically stress incontinence caused by putting pressure on the bladder and following the surgery the valve that prevents the urine coming out under those conditions has been weakened. 


I found that when getting up I learned to do it in stages and once upright stand still for a short time and try to hold the flow. Bit by bit I found that I could then get up and stand without leaking and then I was able to move further as well. I stopped bending but slowly knelt down instead until this gradually improved ass well.


Walking and lifting took the longest to overcome and we are talking about 4 months but every day it improved. This is only my experience and yours may be quicker but I got there in the end.


I won't lie to you and say it was easy as some days (but not many) I felt a bit sorry for myself but I didn't let it stop me from doing all my normal activities. I checked out places I could change pads and although I found it all a bit embarrassing at first I then adopted the attitude that as nobody else is actually aware of my situation then just do what you need to to do what you want to.


I am sure you will get there so stay positive and focus on your successes. 


All the very best.


Kevan 

User
Posted 27 Jun 2018 at 13:44
Hi Eddy great start on the incontinence, I am 3.5 years post op and am bone dry. Just do your pelvic floor exercises as prescribed, and you can definitely over do them, too much will tire out them out and lead to disappointment. I used to check once a week or so by trying to stop peeing when I was urinating to make sure I was doing it correctly. Good luck Mel
User
Posted 02 Jul 2018 at 09:35

HI Eddy


I was so pleased to read your post as despite everything you are sounding upbeat and positive. 


In my opinion your advice at the end is spot on. Laughter is a wonderful gift and helps keep things in perspective.


Glad that you are noticing improvements but not trying to rush things.


Thanks for some great news to kick the week off.


Kevan 

User
Posted 12 Jul 2018 at 17:48

All sounding as though things are improving and you are getting on with life which is great. When I got the position you are in now I used the Conveen sheaths with a leg bag for the longer walks so that I didn't need to change pads and it felt more comfortable. Also out is easy to open the drain tap behind a hedge as we have all done when caught out in the great outdoors. In the gents it was into a cubicle, foot on the toilet rim, open tap - job done.


The Conveen system helped me no end and because it was comfortable and less stressful my remaining stress incontinence improved dramatically.


Well done for not giving in to it.


All the best.


Kevan 

User
Posted 21 Jul 2018 at 14:38

So, I am seven weeks on Monday, post-op. Still have three out of seven keyhole wounds itchy with scabs on where the sutures didn’t dissolve. Antibiotics (three courses) seem to have done the trick.


Continence is fine, apart from the occasional dribble which my underpants absorb. Did I have that before? Probably.


No sign of life regarding ED, despite 5mg Cialis daily. Can still orgasm, albeit with reduced intensity, and no ejaculation. Weird feeling.


PSA @ 5 weeks? Undetectable.


Seeing the Professor for post-op conflab, 7 August. Have repeatedly asked for my post-op prostate biopsy results, which the hospital seems reluctant to provide, saying I must make a 230 mile round-trip to be told them face-to-face. The nurse kept telling me ‘pathology is short staffed and no results yet’, but then I found out from a secretary that the results were in, but she couldn’t tell me them. I have now made a Freedom of Information Request for my full records.


I am wondering what their reticence is about. I am a big boy now, and having had cancer and having had it removed, if there are positive margins on my excised prostate, I will deal with it.


I am more concerned to find out if the pathologist found 2” of penis amongst what was removed! 😂😂😂😂


Best wishes for your continued recovery.


Cheers, John

Edited by member 21 Jul 2018 at 14:50  | Reason: Not specified

User
Posted 10 Aug 2018 at 12:27

Had my appointment today 10/08/18 for my first blood test results and my biopsy on my removed prostate, me and my wife sat In front of the consultant waiting for the out come with fingers crossed and his first words were everything is fine you have the best results we could have hoped for all the cancer was confined in the prostate and no spread detected anywhere and my blood PSA came back clear, what a result. next appointment in November but what a fantastic start to the weekend.

User
Posted 10 Aug 2018 at 14:19

Good news Eddy, and best of luck for the future.


The pathologist found limited spread to my lymph nodes, which increases the chance of recurrence somewhat, but a second PSA this week was still undetectable. I told the Professor he owes me 2”. He looked puzzled. Either he or his sidekick Da Vinci must know what happened to it!


Cheers, John

Edited by member 10 Aug 2018 at 14:25  | Reason: Not specified

User
Posted 10 Aug 2018 at 15:36

Well done Eddy. Long may that continue


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 12 Aug 2018 at 11:04
Well done Eddie, keep positive, and soon the squeaky bum time waiting as the dates of the 3 monthly PSA tests come ever nearer, will soon subside.
User
Posted 12 Aug 2018 at 13:21

HI Eddy


Great news. I am so very pleased for you both and as you say, it was a wonderful start to the weekend.  


Try not to worry about forthcoming PSA tests as there is nothing to be gained by it, just enjoy what you have and long may it continue. Is the incontinence improving?


Kind regards


Kevan 

User
Posted 21 Aug 2018 at 13:19

Hi there,
From reading your thread we started from a similar place although my Da Vinci op was done on 18th May. I am 64 in the last couple of weeks and quite fit and healthy.


My PSA reading 6 weeks post op was 0.1. That was ten times the pretest prediction by the surgeon but the reply was not to worry about it and test again in three months. ( I wait with bated breath)


On the incontinence front, I have no problem while seated or lying down and I can hold on for a few minutes once I stand. When up and about and active, a stand up pee is still very rare but I believe that there is slow progress on this front. Generally two or three Tena 3 pads a day if I have an active day. One will last all day if I sit at a desk. Either way I find the situation manageable.


On the ED front, orgasms are intense but difficult to achieve. Libido is fine but not the slightest sign of an erection. When I had the catheter removed I was given 8x20mg Cialis tablets and to be honest, not much instruction about what to do with them. google suggested that they were for use prior to an 'event' but - in any event, they make no difference.
Prior to the op, I was told thatI would be referred to an ED Clinic. Soon after my GP told me that due to my post code, that wouldn't e happening and he would refer me to the Urology Dept at the Hospital and that he would get an appointment by the end of July. When the letter arrived the appointment is for early October, so on the ED side of things, I do feel rather abandoned by the NHS. Having read some of the info on this forum, I am considering buying a pump and engaging in a bit of DIY therapy.
My wife has been a brilliant support to me and we have found a way to enjoy good sex despite my early feelings of inadequacy.


The entire PC experience has been quite surreal. I have never felt ill or experienced any symptoms prior to the cancer being found. My PSA had been the subject of 6 monthly checks for four years, creeping up from 6.5 to 10.4, before sending me for further tests & biopsy. Post biopsy, all 10 samples were cancerous. The Gleeson score was 7. I think that if I hadn't said that I thought that it was time to explore further, my GP would still be taking 6 monthly blood tests.


I have found it very hard to accept that there was something within me that was trying to kill me. Its just that all this crap has descended on my life and has to be dealth with and move on. I have never been ill, so its impossible to feel 'better'



In reading your thread, I have found many parralells with my own situation and found your comments quite reassuring. I wish you all the best and a speedy recovery.


regards
SK

Edited by member 22 Aug 2018 at 16:56  | Reason: spilling mistooks

User
Posted 21 Aug 2018 at 17:15
Apologies to Eddie that his thread is being hijacked but Stukno, was your post op PSA 0.1 or less than 0.1? Have you seen the result written down and have you checked that whoever read your result didn't miss the < sign? That has happened to John a couple of times and the receptionist said that she hadn't understood what the symbol meant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Aug 2018 at 22:30

Hello Eddy, I also apologise for crashing your thread with my own experiences. However - if you will forgive me:-


My 6 week post op PSA is 0.1  The test was repeated twice because it was thought that my sample had not been put through the right test to detect super low PSA results and eventually they decided that it was indeed 0.1 and not less than 0.1.


Perhaps my only other comment of sharing is that pre-op, I decided that I was not going to comb the web in search of potentially misleading information and I confess that my early explorations of this forum were pretty frightening.  I would say to anyone following who might read this that I took a wrong decision on this as throughout my contact with the various Consultants, Drs and nursing staff there has been an assumption that I, as patient will have a certain level on knowledge and things haven't been explained.   I've had to find out about Gleeson Scores, 'T' ratings for cancers and many other things.  Immediately post op, I was offered a laxative and in my innocence, I replied that I hadn't eaten for 24 hours and thought that it was probably not needed. With a shrug, the nurse moved on and only later did I find what I had let myself in for. In the event no harm was done but I could have damaged myself internally.


I notice that one person commenting on here say that they know more about ED than their ED nurse.  With hindsight, I would say that that's the way to go with all matters, in order to look after yourself. - Hence my previous comment about the DIY therapy.  Physician - heal thyself!  I wouldn't go down the route of buying drugs off the net but I do intend to look into vacuum pumps and if I am not happy with the response and advice that I am offered at the Urology Clinic at my local hospital I will look into paying to see a specialist.


Eddy, if you are down to a single lightweight incontinence pad, then you are definitely ahead of me although, as reported in my previous post, If I have a steady day, mainly seated, I could claim to have recovered from incontinence completely. A day in the garden and I have made no progress whatsoever. 


Enjoy the long walk.


regards,


stu k

User
Posted 22 Aug 2018 at 17:11
Sounds as good as it gets! That might have been me if I’d had a PSA test during my seven-year gap between them.

Keep calm and carry on.

Cheers, John.
User
Posted 22 Aug 2018 at 20:31
Brilliant news Eddie - have a pint of something to celebrate :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Aug 2018 at 10:34

Good results Eddy, I'd be happy with those.


regards,


stu k

User
Posted 10 Sep 2018 at 14:53

Well done Eddy. I’m at the same level at the 3 month mark. You should switch to Tena 1’s they are the same size but are more than adequate for the issues you describe. I thought I could jump to Tena shields but they are just small and dont give the coverage needed. The Tena 1s are a great improvement over the 2‘s


Fresh

Edited by member 10 Sep 2018 at 15:05  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 16 Oct 2018 at 11:09
Click my picture and read my profile re sex life. Also look at the ‘erecting the erection’ thread which is good. Lyns advice is spot on. Very early days for you and keep it healthy each day using a pump. Find the time as it will pay off later. Guide your own recovery. Badger your hospital for ED clinic or your GP for meds. Try everything— pellets , tablets , creams , injections etc. I had partial nerve spare and realistically it took me 2 yrs to get spontaneous rigid natural erections again using daily Cialis. And I truly believe there are improvements monthly still , now 3 1/2 yrs post op. Don’t give up ok
User
Posted 30 Oct 2018 at 15:31
My surgeon told me that lymphodoema occurs after 3% of prostatectomies, and can happen years later.

Sorry you have the problem now. Best of luck.

Cheers, John.
User
Posted 30 Oct 2018 at 16:49
Eddy, maybe the occurrence of lymphoedema depends on how many and which lymph nodes are removed. In my case 18 were taken to be checked for PCa and all were cancer free. I suffered swollen legs, mainly my left. This happened immediately and six years later it persists. I believe it to be permanent and incurable. There are things that lymphoedema specialist nurses may be able to suggest - Nora Batty stockings (useless) and massage (nice at the time but short lived) were things I tried six years ago, but maybe there are new ideas around.

Good Luck.

AC
User
Posted 05 Nov 2018 at 21:07
Fantastic - hope all goes swimmingly from now on
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Nov 2018 at 21:52

Brilliant news - very pleased for you as it makes a huge difference to quality of life. 


Kind regards


Kevan 

User
Posted 05 Nov 2018 at 23:02

Great news. Hope the PSA stays undetectable.


 

Ido4

User
Posted 16 Nov 2018 at 15:55
Sorry you are still not quite right Eddy,

I’m lucky, inasmuch that I haven’t needed any pads since about three weeks post-op, five months ago. I never bothered with any pelvic floor exercises, although I did download a phone app for that, which someone here recommended, that I have since erased, as it was not required.

I think I would need a turbo-charged, latest model, Dyson mains-powered pump to regain the length ‘stolen’ from me my by surgeon, albeit to save my life😉. Am I bovvered? No. I’m just getting the manual one off the NHS.

I have not had any mood swings or depression since my diagnosis, as I researched the statistics about PCa and its morbidity rates. Others here who have lost family and friends to it, think I am callous about the matter, whereas I think I am being pragmatic.

One oncologist told me I am ‘cured’, the little liar, so I’ll go with that for now. I hope your PSA stays ‘undetectable’. If there is an increase in the future, it’s by no means the end of the world, just a load more hospital visits, drugs, ray-guns, etc., that’s if you can be bothered with any of it!

Best of luck for the future.

Cheers, John.
User
Posted 28 Nov 2018 at 12:26

great news, kept it up


andy63

User
Posted 29 Nov 2018 at 00:29
If it's got the < sign it means it's undetectable the number just indicates the sensitivity of the test
User
Posted 17 Jan 2019 at 20:40
John was advised to use it 3 times a day, with 5 bursts of pumping each time. This is to go some way towards replicating what used to happen naturally - erections on waking up, during your sleep, in the shower etc. He didn't enjoy using the pump but the fear of atrophy (the death of the spongy tissue in the penis that fills with blood) meant that he did use it regularly when he wasn't feeling down.

When you get the pump, it may be accompanied by a DVD, or there are videos on Youtube. It is important to get a good seal, so trimming the pubic hair short helps as does using lots of lube on the inside and edge of the tube. After such a long time, your penis may be out of practice on engorging and it can be quite uncomfortable; the trick is to pump slowly and steadily, releasing the vacuum and starting again after a few minutes. When John started he could only get engorged to the E of Esteem on the side of the tube but with practice, was able to get much higher up the tube At least you can see the progress before your eyes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2019 at 08:10
Good luck
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2019 at 12:36

Appointment went well PSA undetectable again, pretty much totally continent just the very odd leak now and again. Off on holiday on the 4th March so will be able to relax it's my Wife's 60th I think she  needs a break, we forget that this affects other people in the family and some times it's easier for the person with the cancer to cope with it.

User
Posted 21 Feb 2019 at 13:43

Great news. I hope you and your wife have a fantastic well deserved holiday.

Ido4

User
Posted 23 Feb 2019 at 10:34
Eddy, the next time you see the ED nurse you can ask about the injections and creams - she will explain the pros and cons and will probably do it there and then to show you how.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Feb 2019 at 10:46

Eddy,  sent you a pm


regards


 


stu k

User
Posted 03 Jun 2019 at 22:45
Re erections it's NOT something you have to put up with. There is a treatment option for pretty much every failure cause, the question is whether you can put up with the side effects or associated risks!
Re PSA anxiety it never goes away!
User
Posted 03 Jun 2019 at 23:16

It's worth keeping up with the penile rehabilitation too (vacuum pump, etc). Someone here has had recovery after 3 years without nerve sparing - I guess nerves can regrow in some cases. (A friend severed nerves in his arm when a window broke and speared him, and those nerves regrew over 18-24 months - I don't know if the same can happen with erection function nerves.) Even if they don't, you want it fully working for injections, creams, pump/rings, etc. If you give up waiting, an implant might be an option too.

User
Posted 04 Jun 2019 at 09:36
It’s a year today since my operation, and my truncated Thomas has shown no sign of life since then, despite partial nerve-sparing surgery and attempts at chemical erectile assistance.

I am grateful to be cancer-free😉 and continent. I can still enjoy a sort-of orgasm.

Quite happy.

Cheers, John.
User
Posted 18 Jun 2019 at 00:14
Great PSA result Eddie - hopefully the ED will improve.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2019 at 19:18

Hi I am glad to hear you are progressing well after your OP, I had robotic assisted prostatectomy Sept 29th 2016 so nearly 3 years post OP, I still wear the smallest of pads mainly small drips after going to the toilet, erections started after about 18 months now pretty much normal it all just takes time, I still remember when I had my catheter out I just leaked everywhere it was just awfull and I never thought I would be where I am today about 98% continent erections almost normal and best of all PSA undetectable, best wishes to all on this site,

Paul

User
Posted 15 Dec 2021 at 23:10
That's brilliant, Eddie.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 17 Jun 2018 at 20:15

Eddy


If you are not already taking some form of laxative, I would speak to someone on your medical team for advice, passing a hard motion past your new urethral joint is not ideal. People on here have been advised to double their laxative dose ,but get advice from someone who is medically qualified. Keeping active will help shift that first motion, but don't over do it. 


Hope all goes well.


Thanks Chris

User
Posted 18 Jun 2018 at 11:22

all well down below bowl movements started last night i have been taken laxatives since Friday so they seem to have done the trick.

User
Posted 18 Jun 2018 at 11:51

Happy days😊 It's amazing how good these victories make you feel. Keep up the good work but don't rush things.


All the best 


Kevan 

User
Posted 18 Jun 2018 at 12:16
Best of luck with your recovery Eddy. Please keep us up to speed with the progress of your recovery if you can.

Cheers, John
User
Posted 19 Jun 2018 at 12:06

day 5 of my recovery and all seems well,i had a very small leakage from my catheter when i passed  a bowel movement its not easy trying not to push it out. i am finding it hard not being active as normally i'm always on the go. The catheter comes out on Friday how did everyone else cope with this for the first time i'm prepared for a flood but maybe i'll be lucky.

Edited by member 19 Jun 2018 at 12:07  | Reason: Not specified

User
Posted 19 Jun 2018 at 23:14

Hi Eddy please to hear everything is going well.


I had my catheter in for 9 weeks as I had a leak at the bladder neck and needed 4 cystograms before it could be removed.


Anyway when it was removed I had to go back to the ward to drink fluids and ensure there was no fluid retention. I was so pleased to get the damn thing out and was so set on not having any retention, I drank and drank at least a couple of pints of water.


'Perfect no fluid retention there' said the nurse 'you're free to go home'.  Home is 13 miles away from the hospital and traffic was very busy in the rush hour.


Needless to say I was busting !  luckily there was a Morrisons supermarket a mile down the road and I popped in there for a bucket. Sat in the back seat all the way home - so glad of that bucket.


If you live a fair distance I'd recommend taking some provisions


Best Wishes Rich


 

User
Posted 19 Jun 2018 at 23:57
Or buy a bottle of Oasis and drink it - the neck is just the right size for emergencies in cars
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jun 2018 at 00:03

Originally Posted by: Online Community Member
Or buy a bottle of Oasis and drink it - the neck is just the right size for emergencies in cars


2 years of pumping will stop Oasis bottles being used it seems to have a much greater impact on girth than length!

Edited by member 20 Jun 2018 at 00:04  | Reason: Not specified

User
Posted 20 Jun 2018 at 00:59
Obviously John has not pumped often enough in the 8 years since RP ..... Oasis still doing the job here :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jun 2018 at 07:07

Eddy


My hospitial gave me some pads to go home post TWOC and my incontinence service had already sent me 120 Tenna 2 before I had surgery. Most chemists sell a urine bottle that holds a litre, has a cap to seal the bottle and a very wide neck. I had a bath towel on the car seat in case of leaking on the way home from the TWOC and I did. Once recovered from the op and  back to work l had the urine bottle in the car and a towel to cover my modesty if I needed to use it in an emergency, only needed it a couple of times. Leakage past the Catheter whilst passing a motion is quite common. 


Thanks Chris

User
Posted 20 Jun 2018 at 08:19

thanks for the advice i'll go prepared and the car seats will be covered i couldn't cope with peeing on them (haha). I think a sense of humour is a definite must in the challenges ahead but hopefully with plenty of support we all get though this and have a long and happy life ahead.

User
Posted 22 Jun 2018 at 16:46

Hospital appointment today to have my catheter removed and it's not as bad as i thought it would be. Had to hang around to make sure my bladder emptied which it did but i had a lot of problems trying to hold my wee to use the jug supplied and went though 3 pads while i was there i hope this is not a sign of things to come as i would think it could be quite depressing the nurse said it was normal for this to happen. Anyone out there had the same problem but managed to control there continence.

User
Posted 26 Jun 2018 at 06:30

catheter out for 5 days now and even though I read up on incontinence until it happens you don't appreciate how bad it is.at the moment I am using 4 pads a day I am not getting the urge to urinate it just keeps trickling out. I am ok when sitting or lying down and dry at night with two toilet visits each night at the moment. any one out there give me a bit hope that things will get better I know its early days but I didn't expect it to be this bad. a part from that my recovery is going well I am getting around ok and my energy levels are good.

User
Posted 26 Jun 2018 at 07:44
Don't worry. I was in the same situation a year ago. But 6 months later I was completely dry. Being dry at night is a good sign.
User
Posted 26 Jun 2018 at 08:10

HI there,


I was in a similar position to you post catheter removal but the good news is that you are dry when sitting or lying down and at night. I found that the act of getting up, bending, lifting and walking started the flood. This is basically stress incontinence caused by putting pressure on the bladder and following the surgery the valve that prevents the urine coming out under those conditions has been weakened. 


I found that when getting up I learned to do it in stages and once upright stand still for a short time and try to hold the flow. Bit by bit I found that I could then get up and stand without leaking and then I was able to move further as well. I stopped bending but slowly knelt down instead until this gradually improved ass well.


Walking and lifting took the longest to overcome and we are talking about 4 months but every day it improved. This is only my experience and yours may be quicker but I got there in the end.


I won't lie to you and say it was easy as some days (but not many) I felt a bit sorry for myself but I didn't let it stop me from doing all my normal activities. I checked out places I could change pads and although I found it all a bit embarrassing at first I then adopted the attitude that as nobody else is actually aware of my situation then just do what you need to to do what you want to.


I am sure you will get there so stay positive and focus on your successes. 


All the very best.


Kevan 

User
Posted 26 Jun 2018 at 09:01

Thanks lads for two positive comments i will take on board what you have said and hopefully all will turn out fine.

User
Posted 27 Jun 2018 at 13:44
Hi Eddy great start on the incontinence, I am 3.5 years post op and am bone dry. Just do your pelvic floor exercises as prescribed, and you can definitely over do them, too much will tire out them out and lead to disappointment. I used to check once a week or so by trying to stop peeing when I was urinating to make sure I was doing it correctly. Good luck Mel
User
Posted 02 Jul 2018 at 07:41

18 days after my prostatectomy and recovering well from the operation I am still being very careful not to lift anything and stretch to much you think all is ok inside until you do to much and your body reminds you that it was a major operation you just had as there is very little evidence that someone has been in there from the outside. I am taking my blue pills as instructed but there is not a lot of action down below or should I say no action but I must admit this does not concern me to much hopefully things will improve but if they don't so be it I am still here. the incontinence in my opinion is the major factor to over come, I went for a walk to the beach the other night with my wife (out of my comfort zone) and by god I found out what stress incontinence can do you would think someone had opened the flood gates the toilets were closed so I had to put plastic  bags on my car seat and head home what a mess better planning required next time as I am not allowing this to interfere with my life, on a more positive note the last couple of days has shown some improvement so hopefully I get there in the end. This is all new to me but if I can give any advice to anyone just starting this journey is stay positive and have a sense of humour

User
Posted 02 Jul 2018 at 09:35

HI Eddy


I was so pleased to read your post as despite everything you are sounding upbeat and positive. 


In my opinion your advice at the end is spot on. Laughter is a wonderful gift and helps keep things in perspective.


Glad that you are noticing improvements but not trying to rush things.


Thanks for some great news to kick the week off.


Kevan 

User
Posted 02 Jul 2018 at 10:49
Four weeks ago today I had my Retzius-sparing prostatectomy. The surgeon used a supra-pubic catheter which comes out of a hole just above the penis. That was removed after ten days and I was immediately continent. I have had a handful of leakages, but I bought just one box of 14 of the smallest Tena Light pads and there must still be four left, which will probably remain unused.

Six out of the seven keyhole wounds have healed well, three still have scabs on, but one became infected and I have just finished antibiotics which sorted it.

I only bled for two days into the bag after the op. but I was surprised during week three to start urinating both red and brown blood, and passing blood clots. I suppose that was my innards healing. No problems in that regard now.

My formerly magnificent penis, “The Ultimate Weapon”, seems to have gone into hibernation, and daily doses of Tadalafil 5mg have so far not tempted him to wake from his slumber! We live in hope!

Best wishes for your recovery Eddy.

Cheers, John
User
Posted 12 Jul 2018 at 16:38

Four weeks after my prostatectomy surgical stockings off at last and daily injections stopped, good news from the doctors they have agreed to repeat proscriptions for my sildenafil tablets. I am booked in for my first PSA test on the 6th August and see the consultant on 10th August for my results hopefully its good news. Incontinency seems to be improving but I still have major leakage when I am on my feet a lot and find it hard to control it seems to me that if my bladder is empty when I move around I leak but if I sit for a while and it fills up I don't leak as much anyone else had this problem. Life still goes on though I just spent 3 days at the lake district with my wife and a couple of friends and with very careful planning and a rucksack full of pads I managed to get around ok.

User
Posted 12 Jul 2018 at 17:48

All sounding as though things are improving and you are getting on with life which is great. When I got the position you are in now I used the Conveen sheaths with a leg bag for the longer walks so that I didn't need to change pads and it felt more comfortable. Also out is easy to open the drain tap behind a hedge as we have all done when caught out in the great outdoors. In the gents it was into a cubicle, foot on the toilet rim, open tap - job done.


The Conveen system helped me no end and because it was comfortable and less stressful my remaining stress incontinence improved dramatically.


Well done for not giving in to it.


All the best.


Kevan 

User
Posted 21 Jul 2018 at 10:23

five weeks since my operation and not as much as a twinge down below, I am taking my sildenafil tablets 50g every other day so hopefully I will get some response eventually, just wondering if anyone had or has the same problem and if things improved over time, the surgeon did tell me he might not be able to spare my nerves I will find this out at my 8 week check up so fingers crossed. my incontinency has much improved I am using 1-2 Tena 1 pads daily and walking 5 miles a day, last night was the first night I went to bed without a pad and did not leak at all even with two toilet visits. all in all I am very happy with my progress and hopefully I will make a full recovery with the water works. 

User
Posted 21 Jul 2018 at 14:38

So, I am seven weeks on Monday, post-op. Still have three out of seven keyhole wounds itchy with scabs on where the sutures didn’t dissolve. Antibiotics (three courses) seem to have done the trick.


Continence is fine, apart from the occasional dribble which my underpants absorb. Did I have that before? Probably.


No sign of life regarding ED, despite 5mg Cialis daily. Can still orgasm, albeit with reduced intensity, and no ejaculation. Weird feeling.


PSA @ 5 weeks? Undetectable.


Seeing the Professor for post-op conflab, 7 August. Have repeatedly asked for my post-op prostate biopsy results, which the hospital seems reluctant to provide, saying I must make a 230 mile round-trip to be told them face-to-face. The nurse kept telling me ‘pathology is short staffed and no results yet’, but then I found out from a secretary that the results were in, but she couldn’t tell me them. I have now made a Freedom of Information Request for my full records.


I am wondering what their reticence is about. I am a big boy now, and having had cancer and having had it removed, if there are positive margins on my excised prostate, I will deal with it.


I am more concerned to find out if the pathologist found 2” of penis amongst what was removed! 😂😂😂😂


Best wishes for your continued recovery.


Cheers, John

Edited by member 21 Jul 2018 at 14:50  | Reason: Not specified

User
Posted 21 Jul 2018 at 15:51
Hi John thanks for your reply sorry to hear your having problems getting information I find that very odd indeed. Glad to see your PSA is undetectable that's a good start to being cancer free.
I must say i find it very refreshing the amount of humour regarding what is a life changing operation for a lot of men including myself i think i might have lost about 2 inches as well but i had 9 inches to start with (haha) but if its not going to stand to attention any more its not going to be a problem.
Thanks for making me laugh John and i also hope your recovery goes well too.
cheers, Eddy
User
Posted 21 Jul 2018 at 17:16
John, FOI won't get you the results before your next oncologist meeting. You are experiencing the reluctance of secretarial staff to deal with clinical matters on the phone. Patient confidentiality etc. How do they know you are who you say you are? I think all hospitals are the same. Patience, my friend.

AC
User
Posted 21 Jul 2018 at 18:53

Originally Posted by: Online Community Member
John, FOI won't get you the results before your next oncologist meeting..........Patient confidentiality etc. How do they know you are who you say you are?

AC


Hi AC,


You have to provide your driving licence, bank statement and a utility bill as proofs of ID, and they have to furnish all records by law within 28 days. I did the same thing when I needed the info for my second opinion, but as that was private there was a £10 charge. This time it’s free. I have all my GP records on my iPad via the Emis Patient Access app, and an envelope full of paper records regarding my PCa adventure, including a DVD of my MRI scan.


The delay may be because the consultant who has to sign off the request is on leave. (In Jamaica or India doing private ops @ £19,950 a pop, maybe, as he is wont to do? Good luck to him!)


Cheers, John

User
Posted 21 Jul 2018 at 20:30

You have muddled up your legislation. You won’t get your pathology via an FOI request; you have to apply under the Data Protection Act 2018 if it is information about yourself. They have a month to give you it unless they decide to take 2 months or decline to provide it at all. They don’t have to give a reason. Can’t you just wait until the 7th when the surgeon can discuss it with you? 

Edited by member 21 Jul 2018 at 20:37  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jul 2018 at 04:08

Originally Posted by: Online Community Member


You have muddled up your legislation. You have to apply under the Data Protection Act 2018 if it is information about yourself.

Quite correct. My mistake. Applied ten days ago.


Originally Posted by: Online Community Member
Can’t you just wait until the 7th when the surgeon can discuss it with you? 


I had a follow-up appointment booked a couple of weeks ago, but when I got my PSA ‘undetectable’ result I wondered if I could have a video appointment with the Professor as he offers those in his private practice, so as to save a 230 mile round trip. It turned out that he was on leave and I would not be seeing him anyway. His understudy was adamant (by way of a flustered secretary new to urology who knew little of it) that I should attend in person, and declined to do a telephone or video consultation. Hence the new appointment with the Prof. in person on the 7th August. 


Positive margins or not? Forewarned is forearmed!

Edited by member 22 Jul 2018 at 05:53  | Reason: Not specified

User
Posted 10 Aug 2018 at 12:27

Had my appointment today 10/08/18 for my first blood test results and my biopsy on my removed prostate, me and my wife sat In front of the consultant waiting for the out come with fingers crossed and his first words were everything is fine you have the best results we could have hoped for all the cancer was confined in the prostate and no spread detected anywhere and my blood PSA came back clear, what a result. next appointment in November but what a fantastic start to the weekend.

User
Posted 10 Aug 2018 at 14:19

Good news Eddy, and best of luck for the future.


The pathologist found limited spread to my lymph nodes, which increases the chance of recurrence somewhat, but a second PSA this week was still undetectable. I told the Professor he owes me 2”. He looked puzzled. Either he or his sidekick Da Vinci must know what happened to it!


Cheers, John

Edited by member 10 Aug 2018 at 14:25  | Reason: Not specified

User
Posted 10 Aug 2018 at 15:36

Well done Eddy. Long may that continue


Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 12 Aug 2018 at 11:04
Well done Eddie, keep positive, and soon the squeaky bum time waiting as the dates of the 3 monthly PSA tests come ever nearer, will soon subside.
User
Posted 12 Aug 2018 at 13:21

HI Eddy


Great news. I am so very pleased for you both and as you say, it was a wonderful start to the weekend.  


Try not to worry about forthcoming PSA tests as there is nothing to be gained by it, just enjoy what you have and long may it continue. Is the incontinence improving?


Kind regards


Kevan 

User
Posted 12 Aug 2018 at 17:10

Thanks for your kind words and positivity Kevan.  The news we got on Friday was better than we could have expected given that every meeting we had with the consultant previously brought worse news than expected.  I am so grateful to the surgeon, and I don't underestimate the value of the help, support and advice I have received on this forum which has given me hope throughout the past 5 months.  As for the incontinence, I am improving each week and its not affecting my day to day life too much.  Thanks again and cheers Eddy 

User
Posted 21 Aug 2018 at 06:12

nearly 10 weeks since my operation recovering well doing plenty of walking and I've started training back at the gym, I have a 26 mile walk booked in on the 8th September along the roman wall so building up to that. my incontinence is improving by the day I am getting away with wearing a shield rather than a pad now and feel way more confident when i'm out and about, still no life down below would like a bit of feed back on how long others took to recover there erections (if at all) as I find it very frustrating that the urge is there but no action. all in all very happy with my progress and long may it continue.

User
Posted 21 Aug 2018 at 08:39
Well done on your recovery so far ! I hope you realise that a totally flaccid penis can have an orgasm through a well lubed hand or oral sex. Get that started ASAP to encourage blood. Have you got an ED clinic ? Pester them for a pump. You need to be using this almost on a daily basis for a long long time. Fills the penis and engorges it so keeping the tissue stretched and healthy. Use one of the bands for penetrative sex or just use it for exercise. Did you have nerve sparing ? Then ask GP for Viagra or Cialis. I suggest asking for daily low dose 5mg Cialis. Also you can ask for pellets , cream , actual injections into your penis. You can get there but don’t rush it — I’m over 3 yrs post op and I reckon normality started returning at the 2 yr mark.
Ask for a pump. Mine is a Somaerect Response 2 from imedicare and is available on the NHS or about £160.
User
Posted 21 Aug 2018 at 13:19

Hi there,
From reading your thread we started from a similar place although my Da Vinci op was done on 18th May. I am 64 in the last couple of weeks and quite fit and healthy.


My PSA reading 6 weeks post op was 0.1. That was ten times the pretest prediction by the surgeon but the reply was not to worry about it and test again in three months. ( I wait with bated breath)


On the incontinence front, I have no problem while seated or lying down and I can hold on for a few minutes once I stand. When up and about and active, a stand up pee is still very rare but I believe that there is slow progress on this front. Generally two or three Tena 3 pads a day if I have an active day. One will last all day if I sit at a desk. Either way I find the situation manageable.


On the ED front, orgasms are intense but difficult to achieve. Libido is fine but not the slightest sign of an erection. When I had the catheter removed I was given 8x20mg Cialis tablets and to be honest, not much instruction about what to do with them. google suggested that they were for use prior to an 'event' but - in any event, they make no difference.
Prior to the op, I was told thatI would be referred to an ED Clinic. Soon after my GP told me that due to my post code, that wouldn't e happening and he would refer me to the Urology Dept at the Hospital and that he would get an appointment by the end of July. When the letter arrived the appointment is for early October, so on the ED side of things, I do feel rather abandoned by the NHS. Having read some of the info on this forum, I am considering buying a pump and engaging in a bit of DIY therapy.
My wife has been a brilliant support to me and we have found a way to enjoy good sex despite my early feelings of inadequacy.


The entire PC experience has been quite surreal. I have never felt ill or experienced any symptoms prior to the cancer being found. My PSA had been the subject of 6 monthly checks for four years, creeping up from 6.5 to 10.4, before sending me for further tests & biopsy. Post biopsy, all 10 samples were cancerous. The Gleeson score was 7. I think that if I hadn't said that I thought that it was time to explore further, my GP would still be taking 6 monthly blood tests.


I have found it very hard to accept that there was something within me that was trying to kill me. Its just that all this crap has descended on my life and has to be dealth with and move on. I have never been ill, so its impossible to feel 'better'



In reading your thread, I have found many parralells with my own situation and found your comments quite reassuring. I wish you all the best and a speedy recovery.


regards
SK

Edited by member 22 Aug 2018 at 16:56  | Reason: spilling mistooks

User
Posted 21 Aug 2018 at 14:18
Hi SK,

What a shame that you had a raised PSA of 6.5 four years ago, which should have spurred your GP into arranging an immediate referral to Urology.

I am sorry that incontinence is still a problem, but so much of that is down to your surgeon and what they find there once they get inside. It will most likely improve with time.

I think it’s early days to think of erections, as the only time I have any sign of tumescence is when sitting on the bog! I did have nerve-sparing on one side, so we live in hope!

You should be able to get a pump on the NHS through your GP, or with your meeting with Urology in October.

I think my op was two weeks after yours, in June, and if I delve and poke round there, there is the slightest hint of discomfort, and I still have laparoscopic scars on my belly that have not yet healed, so I assume it’s the same internally.

I will not be copulating with a free NHS Dyson in the immediate future!

Cheers, John.
User
Posted 21 Aug 2018 at 16:00

Stukno


6 weeks is a bit early to be worrying about dribbles and hardons. Took 2 years for dribbles to stop and usable function to return for me. Keep doing the kegels and get yourself a pump. If you are getting off with the missus without a stiffie you are half way there already!


Your 3 month PSA will be important if it's detectable make sure you get a refferal to an oncologist for a second opinion.  

Edited by member 21 Aug 2018 at 16:01  | Reason: Not specified

User
Posted 21 Aug 2018 at 17:15
Apologies to Eddie that his thread is being hijacked but Stukno, was your post op PSA 0.1 or less than 0.1? Have you seen the result written down and have you checked that whoever read your result didn't miss the < sign? That has happened to John a couple of times and the receptionist said that she hadn't understood what the symbol meant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Aug 2018 at 20:36

Don't worry about my thread being hijacked its good to see people talking about there problems all these conversations help people to cope with there situation When I said my blood test was clear I should have said undetectable.

Edited by member 21 Aug 2018 at 20:43  | Reason: Not specified

User
Posted 21 Aug 2018 at 22:30

Hello Eddy, I also apologise for crashing your thread with my own experiences. However - if you will forgive me:-


My 6 week post op PSA is 0.1  The test was repeated twice because it was thought that my sample had not been put through the right test to detect super low PSA results and eventually they decided that it was indeed 0.1 and not less than 0.1.


Perhaps my only other comment of sharing is that pre-op, I decided that I was not going to comb the web in search of potentially misleading information and I confess that my early explorations of this forum were pretty frightening.  I would say to anyone following who might read this that I took a wrong decision on this as throughout my contact with the various Consultants, Drs and nursing staff there has been an assumption that I, as patient will have a certain level on knowledge and things haven't been explained.   I've had to find out about Gleeson Scores, 'T' ratings for cancers and many other things.  Immediately post op, I was offered a laxative and in my innocence, I replied that I hadn't eaten for 24 hours and thought that it was probably not needed. With a shrug, the nurse moved on and only later did I find what I had let myself in for. In the event no harm was done but I could have damaged myself internally.


I notice that one person commenting on here say that they know more about ED than their ED nurse.  With hindsight, I would say that that's the way to go with all matters, in order to look after yourself. - Hence my previous comment about the DIY therapy.  Physician - heal thyself!  I wouldn't go down the route of buying drugs off the net but I do intend to look into vacuum pumps and if I am not happy with the response and advice that I am offered at the Urology Clinic at my local hospital I will look into paying to see a specialist.


Eddy, if you are down to a single lightweight incontinence pad, then you are definitely ahead of me although, as reported in my previous post, If I have a steady day, mainly seated, I could claim to have recovered from incontinence completely. A day in the garden and I have made no progress whatsoever. 


Enjoy the long walk.


regards,


stu k

User
Posted 21 Aug 2018 at 23:54
Stukno (and anyone else under the age of 60) - have you been informed to get your prescription exepmtion certificate signed by your GP and sent off? Anyone diagnosed with cancer or suffering side effects of cancer treatment is entitled to free prescriptions - the certificate has to be renewed every 5 years but since very few men have completely moved on in 5 years, that isn't usually a problem.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Aug 2018 at 15:33

Hi LynEyre


Just received my report from the Freemans Hospital and it reads-radical prostatectomy and bilateral pelvic lymph node dissection June 2018 Gleason 3 + 4 = 7 adenocarcinoma of the prostate, organ confined, negative margins and negative Lymph nodes (pT2cN0.


Also two PSA blood tests a week apart were undetectable. 


Fingers crossed next appointment Friday 9th November 2018.

User
Posted 22 Aug 2018 at 17:11
Sounds as good as it gets! That might have been me if I’d had a PSA test during my seven-year gap between them.

Keep calm and carry on.

Cheers, John.
User
Posted 22 Aug 2018 at 20:31
Brilliant news Eddie - have a pint of something to celebrate :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Aug 2018 at 10:34

Good results Eddy, I'd be happy with those.


regards,


stu k

User
Posted 10 Sep 2018 at 04:38

Three months since my operation and recovering well, the incontinence is improving all the time I still need to wear a pad (tena 2) to catch the odd dribble but hopefully this will stop. The impotence is still a big issue not a lot of action at all down below I live in hope that some day it will fire up again. Energy levels have been fine back at the gym and doing loads of walking just completed a 24 mile walk,  struggled the last few but apart from sore legs and feet I feel fine, 


 

 
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