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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 26 Nov 2019 at 21:36

Many thanks to all the folks on this discussion group and also my local support group as this journey has been a bit of a rollercoaster ride for the last few years.


In September after a number of years of PSAs and scans/tests the biopsy(TPM under GA) results came back positive Gleason (3+3)=6 5/20 cores with main MRI scan showing PiRADS 4 from apex to the middle of prostate.


All came as a bit of a shock and while waiting for London MDT feedback on recommended options I embarked on some of my own research. I consider myself cry fortunate to have found this discussion group which has given great insight at the options and associated caveats.


Tomorrow is an early start. 7am check in at hospital with surgery booked for 8:30am with prof whocannotbenamedhere and his sidekick De Vinci Xi. The cave of Retzius will be explored and hopefully a favourable outcome will be secured with these legendary surgical hands plus the additional viability provided by neuroSAFE. 


Can’t say I’m looking forward to the epidural but understand the benefits so will request lashings of local beforehand.


See you on the other side....


TG


 

User
Posted 26 Nov 2019 at 21:36

Many thanks to all the folks on this discussion group and also my local support group as this journey has been a bit of a rollercoaster ride for the last few years.


In September after a number of years of PSAs and scans/tests the biopsy(TPM under GA) results came back positive Gleason (3+3)=6 5/20 cores with main MRI scan showing PiRADS 4 from apex to the middle of prostate.


All came as a bit of a shock and while waiting for London MDT feedback on recommended options I embarked on some of my own research. I consider myself cry fortunate to have found this discussion group which has given great insight at the options and associated caveats.


Tomorrow is an early start. 7am check in at hospital with surgery booked for 8:30am with prof whocannotbenamedhere and his sidekick De Vinci Xi. The cave of Retzius will be explored and hopefully a favourable outcome will be secured with these legendary surgical hands plus the additional viability provided by neuroSAFE. 


Can’t say I’m looking forward to the epidural but understand the benefits so will request lashings of local beforehand.


See you on the other side....


TG


 

User
Posted 27 Nov 2019 at 09:02

Looking forward to reading your posts when you emerge on the other side.


Good luck!

User
Posted 27 Nov 2019 at 09:07

You’re in safe hands - good luck. 😀

User
Posted 27 Nov 2019 at 16:21

Good news, and all the best for your recovery.

User
Posted 27 Nov 2019 at 18:14

Tech.


Good news , live biopsy has got to be the way to go. Make sure you get some instilagel or hydrocaine in case the catheter makes the end of the penis sore. Take it easy but not too easy.


Thanks Chris

User
Posted 27 Nov 2019 at 22:08

keep the posts coming  - well done - have a "chilled" night ......

User
Posted 29 Nov 2019 at 15:32

Enjoy your recovery.


Well done!

User
Posted 29 Nov 2019 at 15:59

Just catching up on the news. Looks like leaving at midday was timely as terror attack just down the road from hospital. The other chap also having save operation  also made it out. Crazy stuff and massive respect to the public who tackled the situation before the police stepped in.

User
Posted 02 Dec 2019 at 10:03
Can we now call you ‘Symantec’?
User
Posted 13 Dec 2019 at 17:43

Great stuff TG,


It's great to see the back of that catheter. Keep making nice steady progress.


Kev.

User
Posted 08 Jan 2020 at 01:44

Thank you for the kind words. No problem at all as I was in a simile position last September as didn’t know who was who really in the consultant/surgeon world. Felt like I was firing in the dark until I got stuck in to researching and more importantly connecting with the community both here and locally. Absolutely invaluable and I’m sure I can speak for most of us when I say if we can save you leg work and offer guidance, help and our experiences please don’t hesitate to shout.


TG

User
Posted 08 Jan 2020 at 04:16
My friend has PCa and fortunately bags of money. He has seen five top urologists on three continents and has been to the famous Mayo Clinic in the USA and to Heidelberg in Germany to discuss the NanoKnife procedure. He has been on active surveillance for five years and is doing great.

It was he who said ‘Don’t waste your time with anyone else, Professor Whocannotbenamedhere is your man’, so that’s who carried out my prostatectomy.

I am extremely pleased with the result, except I always remind the Prof on his Christmas card ‘You still owe me 2”’

Best of luck whatever you choose, and I hope you both have a successful outcome.

Cheers, John.
User
Posted 08 Jan 2020 at 06:17
A number of members here are very happy with that particular surgeon; there are also a couple who feel that he ruined their lives and offered dreadful aftercare when it went wrong. Any patient should meet the specialists they are interested in and make their own judgment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jan 2020 at 06:48

Lyn makes an important point as when I met the prof all my concerns evaporated. It’s key that you connect with your surgeon and you trust the hands that could have a significant impact on your life going forwards. My aftercare has been fantastic although no complications. The prof gave me his personal email which I found quite refreshing as most keep it formal and you have to go through their secretary for all comms. He even picked up emails promptly on the Sunday after my op and addressed my concerns ref a potential catheter blockage.  Thankfully with the support of both the prof and kind people on here plus my local PCa group the ‘hints n tips’ shared helped resolve the issue and negated a trip to A&E for a power flush.

Edited by member 08 Jan 2020 at 06:50  | Reason: Not specified

User
Posted 08 Jan 2020 at 11:07

Ah yes the legendary Prof at UCLH. Great guy! One of the chaps on here has had the Focal Laser Ablation in Florida. I think the prof@uclh was quite excited about this during a trial. If memory serves me right the guy who had the FLA here had a recurrence after a year. Not sure of current status. 


Nano knife looked very compelling and is offered in London. If I had confirmed single location tumour I’d be tempted for the sake of a few hundred quid to go have a chat with both professors to get a broader perspective and this more options on the table. My view is that both are at the top of their game. Really down to what works for you going forwards.  

User
Posted 08 Jan 2020 at 14:34
Hi again Apple,

The London guy, Prof / Mr E - can’t remember which - was part of an NHS trial into NanoKnife, the results of which came back as ‘inconclusive’, and went no further, NHS-wise.

Although ‘forewarned is forearmed’, I wonder if you are looking too deeply into this subject for your own / your husband’s good?

Of course, TechGuy and myself and loads of others did exactly the same thing, and we have here something like an exclusive club of ‘trainspotters’ but specialising in PCa!

Although the knowledge base here is vast, you must be guided by your medical professionals.

Best of luck, as ever.

Cheers, John.
User
Posted 08 Jan 2020 at 14:58

Hi AT


Mine was multifocal in all four quadrants of the prostate. Biopsy picked those up and then post op histology found it was a higher grade and more than was thought although thankfully hadn't breached the prostate capsule.


In a multifocal scenario my local team and the London MDT plus the prof said focal therapy really isn't a viable option for me. On the table was AS, Radio Therapy in its many forms although caveats are potential secondary primaries which are very relevant at a person <60yrs. Surgery is more complex post focal therapy. I know the prof mentioned he had done a number of HIFU patients where recurrence had taken place. It was more complex and harder to get defined margin apparently. 


My ex works in cancer research for one of the big pharmas running drugs trials and she is an immunologist by trade. From conversations with her AS was high risk and even gleason 6 there is early research showing over time its not quite as 'in situ' as we would like to believe. Whether this is due to smaller tumours in the area undetected causing issues its undetermined. The prof had seen this research too and nodded when I mentioned it. 


I was dubious about surgery as my local consultant said there is a fair risk of incontinence plus ED issues. Talking to folks who had been to the Prof at London Bridge and had retzius sparing RARP + Neurosafe put my mind at ease. I figured it was a no brainer and just rolled the dice. Six weeks in my continence is fine and drips pretty much resolved but stress leaks can occur. And happy to report no ED are getting better day by day. I'd say in last 24hrs I'm pretty much back to pre-op mojo levels and my good lady is very happy with that. Although I think I'm fortunate with this thus far talking to others. I had no issue pre-op and strong drive etc which can be an indicator of how things will be after surgery. 


Still very much early days but happy with my decision and it was worth visiting the Prof for a second opinion. At worst case it was worth a couple of hundred pounds for reassurance. In reality for me the best decision I ever made and a bonus it was fully covered by my insurance.


John makes a good point in that although we have 'field knowledge' gained en route during our journey it's important to listen to the experts. Although don't be afraid of getting a second or third opinion. I very nearly didn't go to see the Prof at London Bridge due to distance etc but I'm glad I made the effort.


TG

Edited by member 08 Jan 2020 at 14:59  | Reason: Not specified

User
Posted 20 Jan 2020 at 17:02

Hey AT


Just cleaned out the inbox :D


TG

User
Posted 29 Jan 2020 at 15:43

That is such great news. What an amazing recovery! I think you owe your surgeon a drink!


Thanks for sharing


Clare

User
Posted 13 Feb 2020 at 10:18

Update:


had bloods on 11/2/20: Result <0.01. Pretty happy with that. Now three months chill until next one. A good start that’s for sure. The anxiety was more than I thought but just have to adapt for rest of my life. 🍻

Edited by member 13 Feb 2020 at 10:59  | Reason: Not specified

User
Posted 13 Feb 2020 at 10:48

Good to hear positive news Tech Guy.


All the best going forward.


 


Ange.

User
Posted 13 Feb 2020 at 11:12
Great news and hopefully you will be able to give yourself a break for a couple of months. Good luck with the future. Best wishes Dave
User
Posted 13 Feb 2020 at 14:45

Really good news. 

Ido4

User
Posted 08 Mar 2020 at 07:47

Great to hear you are making good progress especially with the continence issue. Sounds to me you are almost back to 100%. May it continue and best of luck for the future.

User
Posted 08 Mar 2020 at 17:39

Great progress. Good news.

Ido4

User
Posted 11 Mar 2020 at 19:29

Sounds really positive. Thanks for the updates, very reassuring. 

User
Posted 14 May 2020 at 15:05
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 May 2020 at 15:41
Good news Symantec!

Professor Whocannotbenamedhere and two oncologists told me not to bother about a PSA result under 0.1, and here I am, right as rain two years later, except the Prof or the robot still owe me 2”, which if I still had it wouldn’t work anyway!😂😂😂

Cheers, John
User
Posted 14 May 2020 at 18:43

Great news Simon.


Good luck to all awaiting test results.


Angex

User
Posted 16 May 2020 at 18:03

Simon


Could be an infection or the result of your intake, constipation ? If it does persist and you suspect some sort of obstruction, it might be an idea to do a urine diary and record the flow, mls divided by secs.


Lots of urine diary charts on the web.


Thanks Chris

User
Posted 16 May 2020 at 18:54
Both caffeine and alcohol are bladder irritants according to my guy (i.e. they make you want to pee more), so I can't see why they should affect retention. I had retention after the biopsy, which they said was down to the anaesthetic. Was also told to not drink too much water at once if suffering from it as it can overload the bladder and make it worse.
User
Posted 19 May 2020 at 06:41

Update on Urine retention:


On Saturday night the Sauvignon Blanc (SB) therapy appeared to work well and relax things. Flow and volume recovered to normal levels. Sunday same flow issues occurred again. The sensation was very similar to when experiencing a ‘freeze up’ over the years occasionally when in public loo. Around 3pm Sunday I decided to test SB therapy to try and determine minimal amount needed to induce openI guess of taps. For me this was ~200ml....single dose to settle the muscles around sphincter which allowed for normal flow and volume. Happy to report that Monday was all normal without needing additional SB therapy. 


Due a telephone consultation with the prof on Friday so will talk through it.


what I’ve done in the meantime in increase exercise levels as had been pretty lazy recently. Removed coffee from my diet (I only had one turbo filter coffee mid morning a day) and reduced time spent sitting at computer as this appears to exacerbate pelvic floor discomfort. Plus restarted my pelvic floor exercises to stimulate the muscles in the area. So far so good.... Whole episode was very odd indeed but pleased I didn’t need to visit A&E.

Edited by member 19 May 2020 at 06:50  | Reason: Not specified

User
Posted 22 May 2020 at 06:15
You could always test your flow rate by drinking a gallon or so of best bitter and checking on it by pissing into the empty pint glasses whilst timing it on your phone stopwatch.

Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred ‘before’!)

I buy 5° Amber Ale from Aldi for £1.09, saving me at least £2.50 if I’d bought similar in a pub.

Cheers!

John.
User
Posted 22 May 2020 at 09:57

Originally Posted by: Online Community Member


Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred ‘before’!)

Cheers!

John.


 


It would be perfectly normal behaviour in a rugby club, though. 


Tech guy - 👍


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 26 Nov 2019 at 23:23
Good luck
User
Posted 27 Nov 2019 at 09:02

Looking forward to reading your posts when you emerge on the other side.


Good luck!

User
Posted 27 Nov 2019 at 09:07

You’re in safe hands - good luck. 😀

User
Posted 27 Nov 2019 at 16:06

Hey folks! Out the other side. Came out of theatre just about midday.


feel fine although might change when/if bruising comes through :o


Neurosafe spotted one nerve bundles implicated so the Prof spared just the one which had good clear margin....so pleased I didn’t got on active surveillance.


very smooth experience thus far and hydrating and having soups. 


blood in catheter bag clearing and no SPC in my case just the urethral tube. After having experienced a cytoscopy doesn’t bother me.


no abdominal drain needed. In incisions look tidy so fingers crossed no post op infection. 


epidural wasn’t as bad as expected. The team were amazing and explained everything along the way. I asked them not to be sparing with local anaesthetic. Few odd sensations but all expected after a run through of the process.


so I guess just patience now and let things heal and enjoy the time with great staff and nice room.


hopefully catch up with the prof later if not tomorrow. Roll on histology on that nerve bundle 👀


 

User
Posted 27 Nov 2019 at 16:21

Good news, and all the best for your recovery.

User
Posted 27 Nov 2019 at 18:14

Tech.


Good news , live biopsy has got to be the way to go. Make sure you get some instilagel or hydrocaine in case the catheter makes the end of the penis sore. Take it easy but not too easy.


Thanks Chris

User
Posted 27 Nov 2019 at 18:28

Top tip. Thanks Chris :-)


Will get some on order for return home Friday. 


first round of oral painkillers taken. I’m just following instructions verbatim.


bringing a roku stick was a good move.


Looking forward to some sleep. Have a fellow discussion group member down the corridor as he had his op yesterday. Looking forward to being on my feet tomorrow :-)

User
Posted 27 Nov 2019 at 20:19

Only post op issue appears to be slow urination. Quite a lot of bloating so while there is flow nurses just monitoring. No shoulder gas pain thus far.

User
Posted 27 Nov 2019 at 22:08

keep the posts coming  - well done - have a "chilled" night ......

User
Posted 28 Nov 2019 at 01:27
So you have no abdominal drains on your left hand side, right? If so you are a lucky lad as for me that was the worst part when they were removed on day 2. I felt like Guy Fawkes being disembowelled!

Have you got a supra-pubic or urethral catheter? I had the former which I’m sure is more comfortable than the latter.

Best of luck with your recovery.

Cheers, John.
User
Posted 28 Nov 2019 at 01:48

Hi John


Thank you so much for kind words. 


no drain which was a surprise...same for the other chap down the corridor I believe.  I have however got double canulars in my wrist/hand. 


I got a urethral catheter....I was quite disappointed have lined up a few pranks on the guys back home. The level 2 pads will be handy as noticed it slightly leaks down the outside of the pipe. Not too much of an issue for a couple of week.


looks like it will be an all nighter here as anti leg machine compressor cycling all night. On the plus side drip has stopped so that’s one less set of beeping.


I have also started to pass wind which has relieved a lot of the bloating. The nurse made a quick exit when I shared this.


oh and my chap looks roughly same dimensions.


I suspect bruising and swelling will be evident in next day or so much like after the TPM biopsy.


TG


 

User
Posted 28 Nov 2019 at 05:53
Hi again Guy,

I had umpteen cannulae too.

I was in a communal ward of six and the Catweazle-lookalike t*** opposite had his telly on at full blast at three am without his headphones on!

Moreover there was constant ringing of what sounded like a mobile phone all night, and I looked at the other five in the morning to see whose phone it was. It turned out to be the bedside nurse alarm from anyone on the whole block, as it rang out on each and every ward. The next night I had my first ever sleeping pill.

Why did you have to have an epidural? I shudder at the thought of it, but then again it would be interesting to see Da Vinci and the Prof at work. I’d sooner be asleep.

Cheers, John.
User
Posted 28 Nov 2019 at 06:24

Just been treating to 5:45am bloods. Useful stuff though as they are very vigilant for things like sepsis. I did ask why an existing cannula could be used 🤷🏼‍♂️


im thankful to have kept up with my private medical...huge room with mod cons but channel selection not as on point as the other private hospital at Marylebone. 


Apparently the prof and anaesthetist prefer epidural. I researched it and leads to better post op experience apparently as less morphine needed plus less load on cardio vascular system and immune suppression. Sounded plausible 🥴 Being asked to lean back into the needle being inserted into my spine was an experience. The local anaesthetic did the job but it felt like pressure with a bit of a sting. Good cop nurse was comforting me to try and refocus. Once the magic fluid was in all was good. Not the best experience but a lot better than I thought it was going to be.


Should get to see the prof today for the low down on surgery. Have also asked for footage if possible so I can treat the other half to a special Sunday afternoon matinee. 

Edited by member 28 Nov 2019 at 06:26  | Reason: Not specified

User
Posted 28 Nov 2019 at 09:18
Yep the epidural is not the most comfortable part. Mine produced an intense sciatica like pain down my left leg as administered, which rather diverted my attention from the injection site - happily fairly brief.

Is this PHC Guys? Be very suspicious of their declarations of “normal”!

Surprised you don’t have an SPC...... thought this was one of the trademarks!

Best wishes for a speedy and full recovery.

Nick
User
Posted 28 Nov 2019 at 09:30

 


Thank you for the kind words :-)


I was worried it was aggravate my lower back injury - disc hernia from windsurfing.


yes top four floors at Guys Cancer Centre.


think the reason no SPC was some neuro resection to achieve negative margin. The prof said he essentially performed a 3/4 Retzius augmented at the end with some bladder manipulation in an alt-Retzius technique (read about it somewhere)to address resection near base of prostate.


So I guess histology will revels all on the 21st


 

User
Posted 28 Nov 2019 at 19:46

Lactulose syrup is very good for getting the bowels moving. Two shots of 15ml today seems to have got things kick started with a vengeance. Have also got fibogel, prunes, seeds and nuts should they be needed at home post discharge.

User
Posted 29 Nov 2019 at 06:28

Reasonable nights sleep. Hate sleeping on my back but need to endure for a couple of weeks with catheter and stitches. Minor amount of co2 gas pain in shoulder but nothing major. Barely need pain tablets but following docs advice and taking when given. 


roku device providing lots of tele streaming options in room so defo with bringing that in to burn time (remember an hdmi cable...standard Samsung flatscreens and good wifi). Food fantastic and staff are all amazing. Full of energy and super patient focused and can’t do enough to make your stay comfy.


discharge day today so will be nice to get home but will mean the warm and welcoming team up here in London :-)

Edited by member 29 Nov 2019 at 06:30  | Reason: Not specified

User
Posted 29 Nov 2019 at 06:48

Rich


If you can get a couple of extra G straps/thigh straps. At night put one round your ankle and attach the night bag tube too it. If you toss and turn it keeps things secure. The extra strap is useful for showering. Drain the leg bag remove the leg bag straps make sure the thigh strap is secure and is supporting the empty leg bag. Have your shower , dry yourself , fit the spare strap to the other thigh and transfer the catheter to the the dry strap remove wet strap and dry for next shower. Some hospitals are now using adhesive catheter fixation devices, so swapping leg straps doesn't apply.


Thanks Chris

User
Posted 29 Nov 2019 at 07:00

The adhesive catheter fixation device is really useful. Simply secures all. Not had a problem with it at all. Released by alcohol apparently...seems a shame to waste a good shot :-)

User
Posted 29 Nov 2019 at 15:19

Mad it home. Taxi to Waterloo then train from there for an hour. Quite a bit of blood in catheter bag so will now be flushing system with gallons of water which should settle it.


now some serious veg time after walking a mile back.

User
Posted 29 Nov 2019 at 15:32

Enjoy your recovery.


Well done!

User
Posted 29 Nov 2019 at 15:59

Just catching up on the news. Looks like leaving at midday was timely as terror attack just down the road from hospital. The other chap also having save operation  also made it out. Crazy stuff and massive respect to the public who tackled the situation before the police stepped in.

User
Posted 01 Dec 2019 at 08:49

Had a couple of issues over the last couple of days with blood in urine and maintaining catheter bag position. Turns out it was my fault/user_error :-). When I clipped the tube/bag in place and also fitted the adhesive fixing point and clip I didn’t clip the pipe in at the Y connector which fixes it in place. #n00berror. Once I did the blood in urine and soreness at end of penis have settled. Looks like blood was being caused by the Boldon in bladder stressing the bladder wall. This stopped when the Y-pipe was properly clipped in. Hope this helps others if they have the same issue.


Other than that the 500ml is quite compact so looking to upgrade to 750ml just so I don’t have to empty so often. Amazing how quick the bag gets filled when properly hydrating. Amazing how everyday things you take for granted change their dynamics with something like this. Thankfully temporary and the 12th is scheduled for removal and testing/tuning of the mk2 beta urethra gets road tested.


 

User
Posted 01 Dec 2019 at 17:05

TG


Easy mistake to make, 90 percent of photos on the net show the catheter strap not in the Y.  I have also come across a number of nurses on hospital wards who do not fit them correctly. You should have been told to empty your leg bag when it is between half and three quarters full, the longer you store the urine the more it smells and more to go into your shoe in the event of an accident.   I assume you have been given 2 litre capacity night bags.


 


Thanks Chris

Edited by member 01 Dec 2019 at 21:12  | Reason: Corrected name

User
Posted 01 Dec 2019 at 17:20

Hi Chris


Totally. Yes, have a few 2ltr for night bags to sup line to the 500ml day bag. Having a big of a headache today with blockage. I think caused after opening bowel and blood. Getting anything from 25ml to 250ml every 30mins after a totally stoppage for an hour between 3 and 4 today. Drank 3.5 pints of water and keeping active. Seems to be slowly clearing although variable. Just keeping up the efforts to clear it as took professional advice from the docs and they said if carries on it will mean A&E to be flushed. Spoke to a friend and ex doctor with a bag and tried reverse milking the pipe near penis and just walking up and down stairs and slowly improving flow and clots in urine which is positive. All good fun eh 🤔🙄😃

User
Posted 01 Dec 2019 at 18:42

TG


When I had my first catheter over five years ago you could hold the bag above the height of the bladder and let gravity push the blockage back, modern bags have a one way mechanism to prevent backflow. You could try lying down on your side to stop gravity pushing debris into the catheter. We have a saying  on here don't let any Tom, Dick or Harry change your catheter after a prostatectomy, your surgeon spent alot of time joining the urethra to the bladder.  Right approach keeping the fluid intake up, but if you stop draining you may need to get it flushed, I have never needed to get a short term catheter changed. 


Thanks Chris


 

Edited by member 01 Dec 2019 at 21:11  | Reason: Corrected name

User
Posted 01 Dec 2019 at 19:00

Thanks Chris


Will try the side laying thing. 

yes, keeping a steady stream of liquids going in. Now free flowing out but getting 100-200 per half hour.


will see how it goes and if need be get it flushed.


Totally agree ref flushing. If that’s needed will go back to London to the team that installed as don’t want the huge op undone by a n00b 


best


Simon 

User
Posted 01 Dec 2019 at 21:10

TG


Where did I get Rich from ? 


Thanks Chris

User
Posted 02 Dec 2019 at 09:05

Hey Chris


its cool, I work in IT so will add it as a Canonical name :-)


The laying on side suggestion was absolute genius as cleared very quickly. Back milking the pipe helped too. After these suggestions I was back to getting ~300-500ml/hr. Never before have I been so pleased to see 1.75ltr or urine by my bed in the morning lol


Time for my clexane breakfast and to switch to autonomous mode.


still amazes me I had major surgery last week as feel really good. Bowels online but obviously taking it very easy as mindful if stitches and internal wounds post Da Vinci.


thanks again for the amazing suggestion and help on here. Absolutely invaluable.


simon


 

User
Posted 02 Dec 2019 at 10:03
Can we now call you ‘Symantec’?
User
Posted 02 Dec 2019 at 11:26

Hahaha


still have catheter blockage issue but in touch with CNS at LB. I think ultimately might be to get flushed. Tried all the usual things and found pumping leg up and down gently from 90 degrees pumps urine through slowly like an old well. Taking 30min measurements so the drama is ongoing 🤪


update: resolved the block walking and raising thigh perpendicular to your body works well and seems to have for now opened the sluice gates. Picture ministry of silly walks 🤷🏼‍♂️

Edited by member 02 Dec 2019 at 12:02  | Reason: Not specified

User
Posted 03 Dec 2019 at 01:51

Originally Posted by: Online Community Member
Can we now call you ‘Symantec’?


I now call my night bladder suspended in the bucket on a stand - “The Matrix” 🤖

User
Posted 13 Dec 2019 at 14:14

Catheter removed yesterday morning at 11am. Little bit of a sting but the clinical nurse specialist (CNS) was gentle so all good. Statlock removed some hair like a waxing even with lashings of alcohol. 


Then onto testing continence. From the word go a could pee and stop/start with no dribbling. At intervals of ~20mins I improved slowly: 50ml, 100ml, 150ml, 200ml, 250ml. Then was scanned by the CNS and given the all clear to go home clad in an adult nappy and tena level 2.


Trip back included a 30min tube and then 30min train ride. I took a pit stop at every opportunity along the way. Unfortunately Paddington suspended all services when I arrived so had to decamp to Alternative Station. This meant ~90min journey so sat near a loo. About 35mins in got a twinge from downstairs indicating I need a pee. Then found all the facilities were out of order. Waited a few more stops and managed to hold it while sweating until located a guard and found alternative facilities in far end of train. 

Got to home town and made it home only to step in through the door and feel a warm sensation downstairs. I made a b-line for the loo and emptied plus dried up. 


After being pretty much normal continence all afternoon I noticed a fairly regular trickle of pee especially when laying on the sofa propped up with cushions. I guess this puts pressure on the sphincter below the bladder which is also battered and bruised plus urethra and penis pretty numb too after 15 days catheter. 


Trying to pass wind also pushed a small amount of urine out. Coughing, clearing throat and sneezing spring a small spurt of urine when on the sofa. Managed the leaks and drips through the evening and hoping this isn’t the shape of things to come. Re-read the profs notes and reassured that’s it’s quite common early days plus when tired. 


I geared up for the worse come bed time. Adult nappy back on with tena 3 and additional kitchen tissue adding extra buffer. Bed double waterproofed with absorbent tena pads to soak up anything during the night and hospital grade (waterproof) duvet and pillows in place.


happy to report during the night although I was up for a pee every few hours and catching the election shenanigans in the morning there were no drips or wetness so hard was a big positive.


This morning no issues until I sat on sofa in propped up laying position when I got a few drips. Plus when I needed to pass wind another small amount of urine emitted and caught in pads/kitchen roll.


im optimistic as can start/stop without issue and for the most part dry.  Hoping the leaks and drips are just as result of post urethral catheter swelling plus obviously the stitches around the urinary sphincter (which also feels sore when articulated). It’s a bit battered and bruised and hopefully when this settles in will have pretty much full control. From the profs notes the biggest gains are during the first six weeks in respect of everything settling plus stitches associated with the anastomoses dissolve as I think they hold the sphincter open a little until they disappear.


Onwards and upwards. Good to be fully autonomous now both night and day :-)


 


 

Edited by member 13 Dec 2019 at 19:54  | Reason: Not specified

User
Posted 13 Dec 2019 at 14:20

Quick update on histology. There was a question mark during the RARP on one side in terms of margin as the neurosafe picked up some suspect cells near that zone as the base and it was though might be close to capsule. In light of this the prof needed to take some of the nerves in one of the bundles to be safe. 


histology came back last week and found all nerve bundles, fatty tissues, margins, seminal vesicles and lymph vesicles clear of tumour cells. Capsule confined but Gleason was upgraded from (3+3)=6 to (3+4)=7 which was expected. Thus far looks like a good outcome as far as cancer can ever be. Always a risk of escapees I guess or the odd micro met but I am cautiously optimistic.


TG

User
Posted 13 Dec 2019 at 17:43

Great stuff TG,


It's great to see the back of that catheter. Keep making nice steady progress.


Kev.

User
Posted 14 Dec 2019 at 15:22

Another good night as only woke twice for toilet. Bladder was full and I could feel the ache on the sphincter. Woke at 8am was semi full bladder and held it while in bed for 30mins. No evidence of drips etc in pads. 


morning was dry. Changed to a tena lvl 2 and had a couple of dribbles when coughing. Did a few jobs around the house without issue then when making a late lunch and holding full bladder when I leaned over kitchen sink the seal gave way and let about 100ml go. Thankfully the tena lvl 2 + kitchen roll insert absorbed it. I’ve found this even before the op occasionally had a leak when bladder full and leaning over the sink so I guess partly this time due to healing/inflamed valve. Overall a marked improvement on yesterday.

User
Posted 18 Dec 2019 at 08:25

Hii am 4 weeks over a robotic assisted rp nearly the same as yourself.


 


Have found the kegel exercises really good - try doing them on 1 leg and them the other with the knee raised


I am pad free at mo but do have the odd accident particularly when forcing wind out


Haven't even thought about the Ed side of things because had a nasty uti when catheter came out - now that was pain


keep in touch


 


 


 

User
Posted 18 Dec 2019 at 12:00

Hi Mark


thanks for the top tip on kagels and will add that today.


definitely getting less leaky. No issues walking or sleeping at all. Just sitting seems to put pressure on the valve but would expect that to resolve over time.


i tried having a beer last night but too early I think as about threes weeks in. It just increased the leaks so will avoid for now.


passing wind in bed is fine no leaks much to the dismay of my better half :-)


So all in all very happy with progress and making steady headway each day.


Hope you have a fantastic holidays and get some quality time with friends and family.


 


TG

User
Posted 07 Jan 2020 at 17:20

Hello Mark, sorry to hijack the post. My hubby has also been diagnosed, gleason 6 been on active surveillance for 10 months or so, psa fluctuating between 4.5-5.5, wonder if we should just bite the bullet. Did you also go down the retzius - sparing? How is your recovery now? Hope great progress is being made. Thanks very much for your help!

Edited by member 07 Jan 2020 at 17:24  | Reason: Not specified

User
Posted 07 Jan 2020 at 17:24

Hi TG, happy new year! Glad to read about your progress and retzius sparing. My hubby is gleason 6 with targeted biopsy from ten months ago. I have read quite a bit of retzius sparing, as well as the traditional method for da Vinci and pros and cons. How did you make up your mind to go down this route and which surgeon to choose? We are absolutely stuck in terms of what to do. Thanks so much for your input! 

User
Posted 07 Jan 2020 at 17:41

Hi Appletree


I was stuck with the same issue. When I heard about the Prof Whocannotbenamed on here and his volumes/stats/background it gave me the confidence to go forward with surgery. Yes I went down the Retzius-sparing robotic assisted radical prostectomy with neurosafe. I had it done privately at London Bridge plus the have the latest robotic surgery systems. I was impressed with care and facilities etc although about 90min train journey for me.


My surgery was initially a little more complex as it was thought via Neurosafe to involve the capsule of prostate (focal involvement with the margins) with risk of breaching so the Prof did a 3/4 Retzius and 1/4 alt-retzius to take a cautious approach and remove part of one neurovascular bundle with a wider margin. Thankfully histology results came back a week later and showed all was clear and everything localised inside prostate.


Rather than a supra pubic catheter I had a urethra catheter which was fine once you got used to it. After 15 days this was removed and continence tested. From outset was pretty good and able to stop start albeit very sore. Intermittent leaks/drips occurred over the next few weeks. No problems at all at night apart from one episode where I sprang and leak but I had taken too much water before bed.....lesson learnt and caught it as is leaked into pad. Aside from that I’m now pretty much dry at just about six weeks. I find coffee/alcohol can cause the odd drip but this will improve once the stitches have dissolved I would imagine. 


Erections are getting there. I would say 80/90% now as I had good function before surgery and this is pretty much returning but obviously dry climax. I had a tingle and semi first weekend after surgery so way ahead of expectations. Since the 21st December have been on tadalafil and taking 5mg daily but sometimes just break in half and take 2.5mg but recovery in that department seems very promising.


No regrets at all and histology reported back my Gleason score was upgraded from 3+3 (Gleason 6) to 3+4 (gleason 7) as the Prof predicted. So AS wouldn’t have worked well for me long term I suspect as it wouldn’t have been long until the prostate capsule was breached.


I was home after two nights. 2hrs on train and a walk after that wasn’t hard at all although my gf was helping with the bags. Recovery very much pain and infection free. If the PSAs come back over the next five years <0.1 it will probably be the best thing I ever did.


Good luck with your journey and please don’t hesitate to ask if you need anything.


TG

User
Posted 07 Jan 2020 at 17:54

Quick status update:


Tomorrow will be week 6 post op.


Feel really good. Wounds well on the way to healing and most of the bruising clearing. Little bit of aches and discomfort around abdominal area but to be expected given what’s healing.


Voiding flow rate good as for a while stream was good but two directions mainly I think to the out of shape end of urethra from the catheter....this has pretty much settled now.


Nights fine and in last week waking up just once for a wee. Completely dry etc


Daytime occasional drips mostly stopped weekend after Xmas. And in last few days I am pretty much dry and thinking of trying without a pad. Pad (level 2 tena) dry are 20g and when taken off about 24g. One of two drips but mainly normal sweat I suspect and confirmed this by attaching another tena 2 as a control to near my armpit area which simulated same sort of sweat etc as groin 🤓😀 Confirmed my thoughts as a few grams of weight is body sweat during day to day activities.


Coffee or alcohol can cause dripping so mostly avoiding for now until that settles.


Erections very good now especially first thing in the morning. I would say 80-90% where is was pre surgery and no problems with penetrative sex. 

Pelvic floor helps lots with stopping stress leaks.


Sitting at my computer desk still not that comfy so avoiding that for the moment. Walking and general pottering around are fine as feel A1.


In summary at this point exceeding expectations. First PSA due week 10 with review by the Prof at week 12. 


TG

User
Posted 07 Jan 2020 at 18:02

Hi Appletree


Happy New Year too!


At the very least get a second opinion with a high volume urology surgeon. I feel very lucky I found my surgeon (Professor) by searching ‘Santis’. Saw the Professor was well respected and good stats. Having spoken to a few people on here who have been under his care and have been through the journey plus via my local support group - a guy my age had also seen the professor at London Bridge. After a few weeks researching and talking to various people I had enough information to move things forward to consultation for a 2nd opinion (had been under local consultant urologists for a few years) . When I met the Prof I knew he was exactly the person I would want when operating near critical systems down below. He’s one of the top surgeons in the UK and travels around Europe demonstrating latest surgical techniques. So I figured I had done everything my end to give me the highest probability of a good outcome. To regrets at all and would do it again. 


TG

Edited by member 07 Jan 2020 at 18:25  | Reason: Not specified

User
Posted 07 Jan 2020 at 18:39

Hi TG, thanks so much for the prompt reply, really appreciate it. I think I know who you are talking about. 😉 I have read other top urologists in London raising questions regarding retzius-sparing as “too good to be true.” which is also my hubby’s concern... given that it hasn’t yet been widely adopted due to the difficulty and complexity involved. 


Glad to hear that both the continence and ED are going very well for you which is truly encouraging. Hubby’s biggest concern would be incontinence as it obviously affects his ability to work or socialise, which is also why retzius sparing sounds so attractive to us. If you don’t mind me asking more personal questions regarding the ED issue, I read a lot about the 1-2inch loss in length which was something that I discovered later on, how are you finding this? 


Btw, did you have a mri fusion perineal biopsy or a rectal random biopsy? The G4 upgrade was found close to your biopsy site or at a totally random different bit of the prostate? We are still dithering if he should have a confirmatory biopsy to see if any volume growth but equally worried about disease progression... 


 


I understand that there are three urologists at Santis, and did you consider the other two? We can’t quite make up our mind about the best balance among, age, experience, number of RP performed, skills etc... wonder if you could shed any light on this? Many thanks!! 

User
Posted 07 Jan 2020 at 19:08

Hi Appletree


No problem at all as pleasure to help as been in exactly the same situation.


Its pretty common in the medical community to raise questions about new techniques I think. They lean on the 'long term data' line quite a bit. I was mindful of this hence talking with four separate patients before making my decision. My feeling (non clinical perspective) is this procedure will be adopted across the NHS in due course. NeuroSAFE is going under evaluation with NICE I think at the moment so is a few years off too. Dramatically improves visibility in real time for the surgeon so a more graded approach to nerve sparing can be achieved. 


Its worth checking out the origins of Retzius approach and there are some youtubes of the procedure. Robotic skills are key it seems. The approach come from two globally respected urological surgeons (Team in south Korea and a team in Milan, Italy). They have produced lots of data and the positive impact on post surgical continence is impressive. 


Yes, my big concern too was continence but after talking to several patients who all had good continence post surgery (immediate or a few weeks after) that had been under the prof and then reviewed his stats online I knew I was in good hands.


Ah yes the length issue. Something I brought up a few times with my local urologist and the prof. I even took a pic in the hotel the night before my op to compare. Happy to report in my case I didnt really notice much of a difference at all as very slight. Erect doesn't seem to have taken a hit at all.. Plus the consultants both said usually its around 5% but anything lost can mostly be recovered post surgery (urethra is very elastic) using exercises ie sex if capable of penetrative or a penis pump (not until given the ok for this so as not to stress the new connection between urethra/bladder (anastomosis). 


I had a TPM biopsy back in September 2019. After a 3T mpMRI locally. This only picked up the 3+3 cells in four quadrants. Its a bit hit n miss as you also have to appreciate the MRI's even though have come a long way don't see everything and have their limitations. Plus its sometimes down to the radiologist and their skills in the interpretations. Best radiologist in my view is based out of UCLH and she is very well respected.


I did check out the other consultants but really down to the fact the people I had spoken to had all seen the prof really pushed me down that route. Fantastic chap with real passion for his subject area and his knowledge blew me away as everything he has predicted from pre-op to now has been spot on.


Here is a data site. Just punch in the surgeons name and should come up with the info. Takes a few minutes to get your head around what you are looking at but sinks in eventually :-) https://www.baus.org.uk/patients/surgeons


 

Edited by member 07 Jan 2020 at 20:39  | Reason: Not specified

User
Posted 07 Jan 2020 at 19:35

Thanks so much TG! Sorry to trouble you with more questions, may I ask where you had your TPM biopsy done pls? We are currently thinking about a one year confirmatory biopsy, hoping that may push us towards a decision. But equally I’m worried about seeding issue during the biopsy and wonder if you have done any research into this? Hubby’s G6 are all in one quadrant following the TPM biopsy, hence us thinking if we maybe able to keep delaying the inevitable for a bit longer but def a lot stress regarding what ifs, especially for me...

User
Posted 07 Jan 2020 at 19:47

Ps I think we did have an MRI with the very well respected radiologist in a private clinic in July 2019. She gave a likert 2/5, which is sort of like Pirads 2. My understanding is that in most cases a biopsy would not have even been suggested with this likert/Pirads score... but his psa was 4.4, way above for someone his age. So I suppose we did the right thing to go ahead with the biopsy...

User
Posted 07 Jan 2020 at 20:04

Sure. I had it at Princess Grace but its more about where the consultant wants to do the procedure. London Bridge I had the op and very impressed plus they used latest Da Vinci Xi. 


Yes seeding always in the back of my mind as this spread my mums lung cancer back quite a while back. I was told its quite low ~2% but not sure how this data is captured and how reliable it is. I would have been tempted to look at focal treatment if in one quadrant of the prostate. The Prof at UCLH is very good with this (nanoknife, HIFU etc) but it my case wasn't an option. Had I have had just one clinically significant tumour I might have been tempted but have found folks that have had had it have eventually had to return as other tumours have appeared over time. Unfortunately prostate cancer tends to be multifocal. All we can do with monitor PSA and mpMRI but another two factors with pushed me down surgical route was the prospect of ongoing General anaesthetics/scans/biopsies and associated risks. I figured now retzius-sparing RARP + neurosafe was available to me it made sense to have while good margins and I was relatively young so would potentially recover quicker. It was fortunate I acted when I did.


Additionally some more aggressive although relatively rare forms of PCa can be very hard to detect as small and don't leak PSA. 


Yes I think pirads 4 is breakpoint for biopsy. My first mpMRI(1.5T) was Pirads 2 and second (3T) Pirads 4. PSA had sat between 3.9 and 4.5 between 2016-2018 then 5.6 mid 2019.  

User
Posted 07 Jan 2020 at 23:38

PS if you go for a second opinion its useful to take an 'infopak'. I took all the letters of correspondence between my local consultant & GP which covered each stage of initial investigation plus results of tests, biopsies. You can ask for the formal results as sent through from the pathology labs plus any scan interpretations. You can also generally ask and get a copy of the MRI scan CD/DVD. I took all this collated information with a summary sheet + Scan_CD when I saw the Prof for initial second opinion. Think it saved him quite a bit of work as he commented on it being the best 'infopak' he had ever received from a patient :-o

Edited by member 07 Jan 2020 at 23:39  | Reason: Not specified

 
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