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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 08 Jan 2020 at 01:13

Thanks so much, TG! This is so thorough and extremely helpful. I wish you the best for your recovery and undetectable psa everafter !!! 


PS I might come back to trouble you more with some further questions as we move forward with this mind boggling process. Really appreciate your time and kind help!! 

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 10:29

Thanks lots John, it is great that AS is working out well for your friend! 


We looked into Nanoknife as well and I read that a Prof from UCLH also offers it in the UK? 


Wonder if you have read about MRI-guided transurethral ultrasound ablation (TULSA)? Sounds like by going through the penis, this would protect the surrounding tissues of the back-passage in the conventional HIFU method. I don’t know if anyone has any insight into this? Think it is only offered in the US at the moment though...

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 14:11

Hi TG, thanks lots for this. I spoke to hubby and seems like I had a misunderstanding of the word quadrant, I thought it meant one quarter of the prostate. He now says he actually has four quadrants with Gleason 6 but all in the same quarter. Were yours the same or on both sides of the prostate? 


I’m concerned about effect of focal therapy either hifu, or nanoknife or cryotherapy, would have on the back passage and it’s surrounding tissues, whether that would make it difficult for surgery further down the road and causing worse side effects etc. I have read that surgery is possible but with difficulty due to surrounding tissue damage. Wonder if you have any insight into this? Thanks a million! 

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 08 Jan 2020 at 15:15

Yes I am definitely getting obsessive now 😂 will need to digest all of the kind and great advice and make an appointment with the professor. Thanks lots! 

User
Posted 20 Jan 2020 at 13:24

Quick update..Week 8.


Pad free now day and nights. Although I wear. Tena 1/2 when out as don’t want to risk it so the extra reassurance works.


I appear to leak a little after a few large beers/wine which to be honest was expected. Soon as I stop necking it the leaks cease so all positive. 


Morning erections strong and pretty much same as pre op. Very happy with this as assumed this would an aspect I would have to sacrifice post op.


Wounds nearly healed now and still slight amount of abdominal discomfort but don’t really notice it day to day.


First PSA’s due week 10 and Prof review meeting week 12.


Looking forward to getting back to the gym end of Feb :-)

User
Posted 20 Jan 2020 at 16:50

All sounds great TG! We had a consultation with the prof over the weekend, which was re-assuring. 


I just have some more questions that I’d like to double check with you and your inbox is full so I can’t send it through. Anyway that I maybe able to communicate with you in private pls? 


Many thanks again! 

User
Posted 20 Jan 2020 at 17:02

Hey AT


Just cleaned out the inbox :D


TG

User
Posted 29 Jan 2020 at 09:07

Week 9 Update:


Pad free 24/7. I carry one with when out just in case and still opt for dark trousers :-)


Strong urine flow and reasonable bladder capacity ~80% pre-op I’d say but I don’t push it in terms of holding as long thus far.


Get a couple of dribbles if too much wine so just keep it sensible sorts that.


No ED issues at all. Taking 2.5mg tadalafil every 12hrs but sometimes skip a day and no negative effect so this aspect certainly exceeds expectations. 


First PSA bloods next week so fingers crossed <0.1 

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 29 Jan 2020 at 18:41
I send Professor Whocannotbenamedhere a small can of WD40 every Christmas so he can treat his pet robot, DaVinci, to a drink!

Cheers, John.
User
Posted 30 Jan 2020 at 00:23

Probably just as deserved John!

User
Posted 06 Feb 2020 at 11:54

Week 10 check in


John, think I need some wd40 as put my back out 🥴🥴🤪


Pushed PSA test back a week as put my back out last week and can barely move. Main issue are the usual exercises I do to maintain it and the core is weights in the gym and if it goes (first time in 10yrs) a back brace. Can’t do both for a few weeks yet so necking the pain killers and using the massage machines.


On the plus side it didn’t go during my visit to London for the op 😜


Aside from that continence all fine and wounds healing nicely. 

User
Posted 07 Feb 2020 at 08:03

Sorry to hear about your back Tech guy. I sympathetic as I know how you feel having suffered myself for almost 15 years. Once you stop doing your normal routine it's really difficult to get going again without putting something out of wack. I am slowly building up the walking and light Yoga exercises but really forcing myself to hold back a bit. So far so good. Good to hear your continence is improving which must be a real positive. Hope you get sorted with your back and continue to make progress.

User
Posted 07 Feb 2020 at 09:39

Originally Posted by: Online Community Member


John, think I need some wd40 as put my back out 🥴🥴🤪



Symantec, 


I think at your age you might need a grease gun rather than a light oil!


😂😂😂😂😂


Cheers, John.

User
Posted 09 Feb 2020 at 09:58

Cheers Dave


hope you improve and making good progress too.


yes back is a right pain and spending much time laying down. Trying some Pilates today but it’s been beyond that. Tens machine helps now so hopefully will loosen up a bit :-)


TG

User
Posted 09 Feb 2020 at 09:59

John,


The Sauvignon Blanc gun has been active 😛🤖🤓


TG

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 16 Feb 2020 at 12:50

John


Pour yourself a drink today mate. Without you and the folks on here I would never have found the Prof. My outcome thus far has been way beyond expectations. I’d seen the profs website a week before joining here but obviously didn’t know them from adam. When I heard about the positive experiences on this site it was like a lifeline. You guys basically to date transformed what was a tumultuous journey. After PSA results this week and now effectively week 12 post op I feel I can now get on with life. 


TG

User
Posted 17 Feb 2020 at 14:14

your inbox appears full :D. Responding to you message. Will forward later,.

User
Posted 17 Feb 2020 at 14:26
Symantec, do you mean me?

I pour myself a drink whatever the circumstances.

My maxim is "Win or lose, we'll have some booze!"

Best of luck with your continuing recovery. The b****** still owes me 2" 😂😂😂😂🙂😂😂

Cheers, John.
User
Posted 17 Feb 2020 at 14:36

I did :D


The maxim correlates closely with mine...waiting for the weekends levels to normalise :-o


I'm fortunate as not much loss from what I can see. It felt wrong taking a pre-op pic in the hotel room night before. The good lady just rolled her eyes :-/


Thanks again for all your support my friend.


 


TG

User
Posted 22 Feb 2020 at 14:58

So had my first hiccup last night. Skin full in town with friends celebrating post op thus far. Don’t remember exiting the pub and kindly given a lift home by one of the group. Woke up 6am having wee’d myself. Thankfully the post op setup of mattress protector and tena bed mats worked a treat. I think I must have been in a coma so I don’t think being post op had much of a bearing as did this ages ago after a heavy night on cocktails and shots. Usual trick is to stick to wine for me. No harm done and a lesson learnt. Those tena mats are epic as only soiled one as it sorted the leak without much issue. Scooped the bedding into washing machine a job done. Took 15mins to find my glasses and remote...... More importantly no leaks in the pub at all. I fell very blessed with the outcome and the magic hands of the prof.


happy weekend everyone!


TG

User
Posted 22 Feb 2020 at 15:13

I have had a number of nocturnal emissions (not of the pubescent teenage boy variety, unfortunately), which started about eighteen months post-op.


In every case, drink was involved, but I do love beer and Champagne. Not a major problem and I have been nocturnally and diurnally dry for about three months lately, although I always was with the latter.


Her Loveliness blames drink, but I blame that bloody automaton Da Vinci and his sidekick Professor Whocannotbenamedhere!


Cheers, John.

Edited by member 23 Feb 2020 at 04:40  | Reason: Not specified

User
Posted 22 Feb 2020 at 15:26

Bollinge


obviously a bad pint. Historically I’d experience this pre-op if I went very silly on the sauce every 5-8years or so...I had nocturnal enuresis up to ~20...Uni seemed to make me sleep lighter as the issue appeared to be that I slept in a virtual coma. Last night was just unlucky but good data to build on. I wondered what the limits would be. Last weekend we had a couple of bottles of SB and no issues. I think game changer last night was quantity on empty stomach. don’t remember much after the pub...on the plus side I didn’t wake on the cold kitchen floor...although that would have been logistically simpler. 


certainly a journey isn’t it but yet to leak when out post 6 weeks after op whatever I throw at it....can’t complain I guess. Bed is triple armoured based on my old data as a kid plus learning on this wonderful site. Tena mats is like super slurpers 


 

User
Posted 22 Feb 2020 at 15:28

Da Vinci was kind to me. No loss of any noticeable mass/quantity. Must have been running later firmware I suspect 🤖🤓

User
Posted 26 Feb 2020 at 17:55

Week 13 Update:


Nothing much to report. Things settling. Back improving after putting it out the other week. The gym was needed for this so went down yesterday fully armed with tena lvl 2. Spend 30mins doing usually pre-op routine for back of around 80-100 late pull downs (cable machines). Taking it easy for obvious reasons(25-40kg). Also crammed in 3x10dips with 35kg offset. All felt ok but when I got home evidence of a few minor drips in pad. Will work out what triggered .....dips/lats. Pretty minor so not big issue. I don’t do much pelvic floor other than Pilates as normal continence. Will try to tension pelvic floor when in the gym again later this week and see what effect that has. Tbh if it means a tena 1 or 2 when doing resistance for rest of my life then cool as all fine outside of that 😎🤓😀


Hope everyone else is doing well post/pre op 👍


Updated (28/2/20): gym visit two. No drips or leaks with lat pull down. Appears trigger last time was dips which makes sense as puts a bit of pressure on pelvic floor. Will gets this next time while engaging.

Edited by member 28 Feb 2020 at 14:57  | Reason: Not specified

User
Posted 28 Feb 2020 at 22:20

Sounds like you are doing really well and long may it continue. I am somewhat behind you recovering wise but can still see some progress.

User
Posted 28 Feb 2020 at 22:50

Hi Dave


thanks mate. Stay positive as I had many moments of doubt until the drips ceased. Easy to forget it just takes quite a bit of time after effectively prostate/bowel/bladder surgery.


hope you have a great weekend.


TG

User
Posted 05 Mar 2020 at 08:15

Morning, guys (from UK)


History: Diagnosed 2013, focal cryo 2014, focal HIFU 2019, RALRP 27th Feb UCLH


Recovering quite well.

______Grateful for the goodness of God________

User
Posted 05 Mar 2020 at 08:26
Morning, guys (from UK)

History: Diagnosed 2013, focal cryo 2014, focal HIFU 2019, RALRP 27th Feb UCLH

Recovering quite well.

______Grateful for the goodness of God________

User
Posted 05 Mar 2020 at 08:29

Hi Andy


Great to hear from you and hope the recovery goes well. Just picked up your email and responded.


cheers


TG

User
Posted 07 Mar 2020 at 16:29

Week 14 Update:


No problems at all and no leaks. Did the gym yesterday and forgot the precautionary pad but didn’t need it. All dry so very pleased. I can feel the healing progress on a week by week basis. Also slept right through last night without a visit to the loo.


Slight sore throat and head cold today. So taking it easy 🤓📺🤖🦾


Hope everybody else making good progress and have a fantastic weekend. 


TG

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 11 Mar 2020 at 22:48

Originally Posted by: Online Community Member
Morning, guys (from UK)

History: Diagnosed 2013, focal cryo 2014, focal HIFU 2019, RALRP 27th Feb UCLH

Recovering quite well.


Thanks for posting. Interesting to me as my husband has also had 2 focal treatments - FLA in Florida in 2017 and focal HIFU in London earlier this year ( first post HIFU PSA due in April. 


Opting to extend QOL as a priority whilst controlling the PCa but met with surgeon before the focal HIFU who says removal is still on the table should things not go to plan


pleased ‘to meet’ some else who opted focal twice! 


Glad to hear the recovery is going quite well. Did you have any nerves saved? 

User
Posted 14 May 2020 at 10:34

Quick Update:


Had bloods done on Monday.


Good result. Effectively undetectable levels of PSA (<0.006) so that’s what I want to hear. Looks like they did a sensitive test at the lab this time. (Prev test result was <0.01).


Must say was on edge for this one so relieved. Onwards and upwards.


Best to all as without your support this whole journey would have been a nightmare. 


Stay safe


Simon 


 

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 16:14

Cheers Lyn :-)


Thanks John, Thats my view. Don't panic until >0.1....less detail the better as ignorance is bliss at these levels. Sauvignon Blanc may be opened tonight...I have a reasonably valid excuse for a change :-o


I feel somewhat fortunate with post op functionality. It did feel odd taking a pic in my hotel the night before. The first thing I did post op when i got wheeled back to my room is check the sump. My female nurse walked in as completely the wrong time and I struggled to explain things. 'checking the oil' produced a confused face. The male nurse found it hilarious :-/


Cheers


S

 
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