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What now - any advice?

User
Posted 23 Feb 2018 at 23:54
Rafael

Look forward to hearing how you progress following your retzius procedure.

What is leaking out of the port and is there a stitch securing the Catheter to your abdomen wall ?

Thanks Chris

User
Posted 24 Feb 2018 at 09:07
Chris,

It is just natural internal pus/blood leaking through the pore. The amount of leak is not very large, around 1cm diameter around the catheter. The amount of leak is receding day by day.

The catheter is not stitched to the skin as it goes straight into the bladder and it is secured by an internal water balloon which holds it well in place. There is no feeling of pain at all with the prepubic catheter. It is much much better than the traditional catheter running through the urethra. I am indeed very grateful for having the prepubic catheter as it makes my recovery much more comfortable and bearable.

The prostatectomy clinical nurse is always on hand via the phone or email to answer my questions or concerns. It is a great post-op service provided by the hospital.

I am feeling great this morning, considering the fact that the Retzius-sparing robotic radical prostatectomy is labelled a major operation.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User
Posted 24 Feb 2018 at 13:42

Hi Rafael,

Pleased to read that your RP went well.

Originally Posted by: Online Community Member
I was taken aback when the nurse said it was 3.8! I definitely have prostate cancer and yet the PSA result is indicative that I am within the normal range which literally means that I do not have prostate cancer!

It does sound unusual but thankfully they found and removed the PCa despite the low reading. This seems to be one of the shortfalls of PSA testing, but best there is until another initial indicator is found.

Yesterday Stephen Fry told of his diagnosis of PSA at just 4.97 yet Gleason 8 upgraded to 9 after RP and with Node involvement.

At 60 he was just over the 4 level.

Best wishes on your continuing recovery.

G

User
Posted 25 Feb 2018 at 10:32
Yes. The PSA readings can be very misleading. I did ask my surgeon why that is. His reply was "Don't ask me because I really don't know."

There needs to have a better testing method and hopefully it is not too far off in the future. I have two sons, aged 38 and 36, and I told.them to take PSA test when they are over 40, rather than to wait till they are over 50, and also.to keep an eye on increase in urinal frequency. One can't be too careful and prevention is better than cure.

User
Posted 27 Feb 2018 at 12:05

I am seeking a bit of help and advice from seasoned contributors on this website.

I noted yesterday that when I had a strong sneeze, I wet myself from the penis side despite the fact that I am on the catheter. Is this unusual? Also I had my first bowel motions which unfortunately led me to strain myself to get them out. While straining I peed on the penis side while still on the catheter. Again, is this unusual?

I have been doing pelvi floor exercises but with the above two incidents I wonder if my exercises are not working?

 

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 27 Feb 2018 at 12:30

Perfectly normal to leak from the penis when the bladder muscles are strained by bowel movement or a sneeze - this would happen with a urethral catheter as well. You shouldn't really be doing pelvic floor exercises while the catheter is in place though.

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

User
Posted 27 Feb 2018 at 12:40
Thanks for the reassurance. Am I going to cause myself problems by doing the pelvic floor exercises while on prepubic catheter? I took it upon myself to strengthen the area in preparation for the coming Monday 6th March when I have to switch off my catheter.

I would be happy to hear the reason why I should not be doing it... I am prepared to stop if necessary. I hope I have not done any damage.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 27 Feb 2018 at 14:35
Rafael

I can understand the reasons for not doing PFEs with a urethral Catheter. I have had a suprapubic Catheter for about 11 months and keep being told to do the PFEs.

A bit of leaking "may" be a good sign as it would seem to indicate the urethra is still okay.

Thanks Chris

User
Posted 27 Feb 2018 at 18:16
Thanks for that. I checked and I note my post-op lists of "to - do" at home says to do PFEs as soon as I am able to, and only to stop if I find it painful.

I am slightly concerned if the PFEs may disrupt the healing process at the urethra connection with the bladder?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 27 Feb 2018 at 18:54

If the to do list says you can do them with a suprapubic catheter then you should assume that it's fine.

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

User
Posted 06 Mar 2018 at 12:04

I clamped the catheter at 9am this morning. 9.55am I had my first natural urination and God it sort of burned the tip of my manhood. No blood. I use Tena level 1 pad and it was dry. Second episode came at 10.35 following an urge caused when I bent down to pick up the dishcloth. It is noon now and my bladder seems to hold well. The Tena pad is still dry. The initial volumes of the two episodes this morning were 200ml and 125ml respectively.

Without speaking too soon, I am so far delighted with the continence situation. Is this what everyone initially experience? Is the worse yet to come? I am keeping a positive outlook.

I was saddened to hear of Bill Turnbull's predicament this morning and I wish him well in his battle.

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

User
Posted 09 Mar 2018 at 10:07
I am pleasantly surprised at my continence situation. It is nothing like I read about or feared. I went to bed last night at 10.30pm and woke up at 6.50am without having to answer the call of nature and I think it is a pretty good achievement as a consequence of the Retzius-sparing type of robotic radical prostatectomy and it is only 2 days after the removal of my suprapubic catheter. During the day my urinal frequencies are roughly spaced between 2 and 3 hours, which is about 6-7 times a day. I am now able to avoid wetting myself when sneezing , laughing and coughing, thanks to pelvic floor exercises. I am aware it is early days yet but I am extremely happy with the outcome so far.

I am awaiting my meeting with the surgeon on 3 April when I will know the laboratory results on my prostate gland - I have to try and be positive about it.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 09 Mar 2018 at 10:41

Good news and wish you continue to further progress well.

Barry
User
Posted 09 Mar 2018 at 12:15
May I ask where you had your Retzius-sparing prostatectomy?

NHS or private?

Who was your surgeon?

Best of luck with your recovery!

User
Posted 09 Mar 2018 at 16:52
I had the surgery on the NHS at the Royal Surrey County Hospital. I had an excellent surgeon. I understand I cannot name him in this group. You can Google and get the name. Type "Retzius-sparing robotic radical prostatectomy Royal Surrey County Hospital" and you can easily find his name.

Hope it helps.

Rafael.

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 10 Mar 2018 at 04:52

Many thanks.

Guess who I am going to see later this month? Already booked weeks ago.

And once again, best of luck with your recovery.

User
Posted 10 Mar 2018 at 08:56
Bollinge,

If he is the same surgeon who did my prostatectomy then you are in great hands. My operation was on 19 Feb (the day after my birthday!) and today 10 March I am pad-free, walking just over 2 miles a day in my local country park. You will do well rest assured.

Good luck with your coming op and let us know how you get on.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 18 Mar 2018 at 13:53
Tomorrow (19 March) will be exactly 4 weeks after my operation and I thought I should say a bit more about my progress, especially my continence situation.

With the exception of the odd reaction due to unexpected coughs, sneezes and outbursts of laughter, I have hardly wetted myself. Last Friday was my son's wedding day and I had 7 pints of bitter along with 5 large glasses of red wine and I slept through the night for 7 hours! Not a drop of wetness. Last night my family took me out for a meal and I had 4 pints and 2 glasses of red wine and I slept for 8 hours through the night without answering the call of nature. I use Tena Extra Life pads as a precaution and I now do not need them. This is amazing and I would like to thank the skill of my surgeon in performing his Retzius-sparing robotic radical prostatectomy. I do not have any pain whatsoever at present.

I dearly hope the kind of prostatectomy which I had will be made freely available to many men and the sooner the better because recovery is quick and continence is almost as normal as possible immediately after the suprapubic catheter has been removed. It is my feeling that the use of suprapubic catheter should be made the norm after prostatectomy.

All that remains for me is to hear the results of the laboratory test on my prostate gland on 3rd April and I am keeping my fingers crossed.

For the present, I have never felt fit and happier.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 18 Mar 2018 at 13:56  | Reason: Not specified

User
Posted 18 Mar 2018 at 15:42

Congratulations on your recovery, and best of luck for the future.
I also like to drink “plenty of fluids”.......
Cheers, John

User
Posted 29 Mar 2018 at 13:59
I thought I should record here that I am 100% pad free and on 2 April it will be my week 6 since my Retzius-sparing robotic radical prostatectomy. I have an appointment with my surgeon on 3 April both to discuss my current condition and the laboratory results on my discarded prostate gland. I am keeping my fingers crossed on the latter.

I have had approaches from a number of men via email querying about the risks of opting for Retzius-sparing robotic radical prostatectomy. I would like to state here that everyone should go for it rather than accepting other approaches advised by surgeons who are untrained in the Retzius-sparing type of prostatectomy. Like any surgery, it has consequences in terms of pain, soreness and side effects, but the Retzius-sparing method creates post-operative conditions that aids recovery more quickly and less painlessly and even less frustration. The suprapubic catheter is a great thing - it is more comfortable than the tradition penis catheter. There is no pain and no irritation. The suprapubic catheter removal is smooth and completely painless - I did not know it was even out when the nurse pulled it. Continence is fantastically normal quickly after the unlocking and removal of the catheter. The only problem I found was trying not to forget to control when sneezing, coughing and laughing during the first 3 weeks after catheter removal. Now, I am able to laugh, cough and sneeze without having to tighten my genital area - it is back to normal.

I would recommend men to go for the Retzius-sparing type if that is possible. I am only saying this based on my pleasant experience... even now I am still in awe of my surgeon's skill and professionalism and I am eternally thankful for what he has done to me.

 
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