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Went for Prostatectomy

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User

Posted 23 Mar 2021 at 09:55

Prostate removed 18 March. T2c M0 NO. Bilateral nerves spared and lymph nodes left untouched. Feeling like dodged a bullet here. Recovery commenced at home 29 hours from door to door. Feeling great, no pains, catheter tolerable, constipation sorted - phew. Should anyone want to discuss, in depth, I’m more than happy to share far more detail from start to finish. I’ve been down this road before having lost my thyroid to Cancer 10 years ago. I’m 60 years old, 183lbs in weight, fit as a flea. Thank goodness for da Vinci Laparoscopic Robots.

Edited by member 23 Mar 2021 at 15:07 | Reason: Typo in title 😂

User

Posted 23 Mar 2021 at 09:55

Edited by member 23 Mar 2021 at 15:07 | Reason: Typo in title 😂

User

Posted 04 Apr 2021 at 07:39

Update. Total bladder control, whoopee. Previous worry about flow has subsided given a healthy stream has returned with gusto. Nocturnal control also spot on. Down to 3 visits per night with urgency reducing and bladder capacity increasing judging by amount of pee passed.

Lucky to have had double nerve sparing op. Thoughts are moving to ED, but not before full pathology report etc will I start down the full penile rehab route.

Hope everyone is well. Bio updated to reflect the fact I’ve just realised I could update it!

Edited by member 04 Apr 2021 at 08:04 | Reason: Bio update

User

Posted 09 Jul 2023 at 22:10

Sam , I have a permanent suprapubic catheter so I see each morning how much urine I produce. My out put varies from 300 or 400 up to 1500 mls over night. A glass of wine drastically reduces my overnight production.

Before diagnosis and surgery I would never produce 1500 mls overnight. I suspect the catheter has an effect on urine production.

Make sure you have a variety of pads ,but if you have to buy them don't get too many, you may not need many. Get a waterproof bed sheet or get some incontinence bed pads just for your side of the bed, I got bed pads from the hospital. I did alot of hotel nights and had a pad in my pants , a pair of tena4 pants over them. I put an incontinence bed pad in the bed and a towel on top. A bit over top and I never leaked, but it saved any chance of wetting the hotel bed.

Having said all that I was 99 percent dry 4 days after catheter removal.

Instilagel or hydrocaine will help relieve discomfort in the penis. I always made sure I was well hydrated before my twoc particularly important in the current hot weather.

Hope all goes well.

Thanks Chris

User

Posted 29 Jul 2023 at 14:17

It will be like that for a couple of weeks - you can usually feel the pee escaping but should be something that you can stop as soon as you feel it. I found one of the best exercises was the stop/restart during a pee. Also drinking plenty of water (at least 2L per day) which sounds counter-intuitive but really does help. When the bladder is full you have better muscle control over the start/stop.

It's also a case of concentrating when you know of something that will cause a dribble - for example if you feel a cough or sneeze coming on then really concentrate before it happens to work the muscles - it takes time to get it every time but gets better the more you practice. The same goes when straining to lift or even standing up.

It really does improve over time - but yes, it's frustrating and thank goodness for Tena :)

I should also say, that the exercise that helps when I go to stand up is called 'Shorten your penis' - I'm not sure how else to describe it but it's like trying to pull your penis back into your body - It's very similar to the pelvic floor exercise but I found it helped thinking of it in this way. :)

Edited by member 29 Jul 2023 at 14:20 | Reason: Not specified

User

Posted 24 Mar 2021 at 22:56

. . . Had to Google TWOC. I get it now! 😎

User

Posted 25 Mar 2021 at 22:29

Please be careful Marty. You might be fit as a fiddle, but they stitch everyone up with the same thread, and they probably bought it at Woolworths.

There are a few stories on here where people say "I dug the garden this weekend... and now I have a pain... blood... etc... ". So what I'm saying is take it easy for a few weeks, you've got your whole life ahead of you, don't risk extending your recovery from surgery by rushing things now.

Wishing you the best, it is an impressive recovery so far, but don't push it.

Dave

User

Posted 26 Mar 2021 at 16:34

TWOC completed with no snags. Urethra tender along the penis towards the tip. No leaks, I can pee at will and stop start mid-stream. Still wearing a pad though, taking no chances. Took the catheter balloon section home with me as a souvenir.

So, R&R, no bikes, no lifting, targeted Kegel work starts tomorrow in earnest.

Pathology and PSA 29th Apr.

User

Posted 29 Mar 2021 at 08:47

Quick update, hopefully get an answer from the gurus. All is well, really well. Total bladder control now since TWOC, through the night too totally dry, being woken by urge to pee twice per night as opposed to the previous 5 or 6 times! No pads required, but have them on standby - avoiding complacency. Absolutely no pain from Da Vinci wound sites.

Can I question other folks experience of urine stream. Mine is still relatively weak, although showing improvement. Taking a while to empty bladder. No question of urine retention at all, just want to know what other folks urine flow rates were like in the very early days?

Cheers.

User

Posted 30 Mar 2021 at 09:53

Thanks for the advice - love this forum.

Joe H, good to hear from you. Fitness is everything and so is weight AFAIC. Being fit has helped me throughout and I started the Kegel regime as soon as I was sure that prostatectomy was the way forward.

Here we go in answer to your Qs:

1. Gleason (3+4) 7 confined to right lobe of prostate, discovered in all 6 biopsy 1cm cores taken on that side. Longest core sample length 9mm, shortest 3mm indicating disease. Graded T2c N0 M0. The c means ‘from biopsy’ - Decision for surgery option was based on two important factors. First - MRI indicated a contained tumour. Second - I’ve suffered from prostate infections, proven through urine cultures and DREs, for many years. Prostatectomy has dealt with both issues. It’s nearly 2 weeks since op and the relief from the supra pubic pain associated with chronic prostatitis is joyous. The cancer was symptom free. Finally, pathology/histology will tell the full story

2. Nuffield Cambridge Hospital - 18 Mar 21 - My choice through Google - and reputation - linked with the answer in Q5

3. Not long, Biopsy 3rd Feb 21

4. No

5. My Company Scheme is footing the bill

6. Yup, I elected for the Surgeon who leads the Cambridge team. Due diligence, through contacts, revealed has Don status amongst DaVinci specialists. Superb . . .

Finally, all is well apart from urine stream, which is getting better. Will report the pathology results in due course. In the meantime, Kegel exercise and taking things very easy. Not considering a return to work until June at the earliest.

Best to you Joe, and everyone else too

Marty

Edited by member 30 Mar 2021 at 10:06 | Reason: Cocked up my answers! 😂

User

Posted 30 Mar 2021 at 14:38

You ain’t a pest Joe, were all in this together. I acted quickly because I was fortunate to have the private route available. From Biopsy Result to Da Vinci Robot was just under 5 weeks.

User

Posted 30 Apr 2021 at 11:06

Well, yesterday, 6 weeks on from RRP he rang and gave me the news - there was no bad news:

As follows:

PSA undetectable - <0.04
Final pathology - pT2cpNxM0
No capsular spread - clear margins. Evidence of prostatitis in sample tissue - It was the recurring prostatitis that got me to the urologists for investigation in the first place
PSA surveillance only - in 4 months

Feeling lucky, prostatitis symptoms all gone obviously, bladder capacity growing

SomaErect II pretty good

Hopefully, reaching for the sky again soon

Edited by member 30 Apr 2021 at 11:11 | Reason: Spooling

User

Posted 30 Aug 2021 at 23:46

All looking good Marty. Just read your flying career in your profile, quite interesting. I stick with gliding. At least nobody's trying to shoot you down.

Edited by member 05 Dec 2022 at 16:41 | Reason: Not specified

Dave

User

Posted 09 Jul 2023 at 20:48

It is important to have adequate fluid but some people reduce the need to pass urine to such an extent at night by stopping intake of fluid by a certain time which will vary depending on time you go to bed/sleep.

Barry

User

Posted 09 Jul 2023 at 21:53

With the catheter I filled the night bag with a good 2 litres almost every night but when it was removed I only have an occasional dribble when lying down, easily coped with a pad or a pair of the lightweight incontinence pants.

I wake up wanting to go and I have a urinal jug next to the bed - swing my legs out to sit on the edge of the bed, grab the bottle and drop the penis into it and then stand up - this starts the flow without thinking about it (being half asleep).

It started at 3 times a night and now is down (after 7 weeks) to twice or sometimes just once.

User

Posted 10 Jul 2023 at 14:30

Hey Sam, you read my Bio, nice one. Old Crabfat here has done some aviation over the years I can tell ya’ . 😂

Some great advice here Sam from the other chaps. Everyone is different. My own case has been helped by being fit, relatively straightforward RP and total bladder control which I’m convinced is down to two things. A fantastic surgeon and pelvic floor muscle preparation prior to the op.

Immediately post TWOC, for two weeks or so, I restricted my fluid intake from about 6pm onwards. I still peed a lot at night, but in small amounts. I never strained just relaxed to allow gravity to do its work. In no way did I want to compromise the wound healing in the bladder/urethra area.. I felt there was always a little amount of urine retention but not enough to make still want to pee. I’ll admit also for the first few nights, I slept on a waterproof mattress cover (wife insisted) and wore thin Tena pants in a light pair of shreddies. Very little leakage if at all, I’ve been lucky. It will all seem quite dramatic at the mo, but again, trust me, your body given time, is a masterpiece of biology and will heal beautifully.

Don’t be too fussed about the ED side of things to start with. I started with SomaErect II pump after about 6 weeks - a great piece of kit. I have no idea if you have a partner to share all this with, but mine has been FANTASTIC in helping me rehab. It’s taken time, but our sex life is pretty good - it’ll never return to the heady younger days of sheer spontaneous abandon, but hey, I quite enjoy the planning that goes into our current “regime of enjoyment!”

Edited by member 10 Jul 2023 at 14:32 | Reason: Not specified

User

Posted 29 Jul 2023 at 12:33

Hi Sam, sounds like you are in the same position I was 7 weeks ago - the good news is that I have incontinence under control but have to remember to hold it in when lifting or sneezing otherwise I get a dribble. One pad lasts all day and is usually 99% dry at the end of the day. No nightime leakage at all.

My histology consult was 6 weeks post op so you are on the same schedule.

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User

Posted 23 Mar 2021 at 13:35

Marty

All sounds good, take it easy but not too easy. It is sometimes easy to forget it is major surgery and there is alot of healing happening inside especially with joint in the urethera.

Thanks Chris

User

Posted 23 Mar 2021 at 13:50

Sounds good Marty.

Dave

User

Posted 23 Mar 2021 at 13:55

Thanks guys, totally resting up. Catheter out Friday, building up to that moment and the continence regime.

User

Posted 24 Mar 2021 at 19:03

Wishing you a smooth recovery

User

Posted 24 Mar 2021 at 20:33

Marty

Make sure you are well hydrated before you get to wherever is removing your Catheter. Listen to the staff as regards liquid intake for your trial without Catheter. Don't be tempted to drink less in the hope you will not leak. If you fail the TWOC they will have to fit another Catheter.

Remember to relax, I have done twelve twocs and never failed.

I always put a cover on the seat and sat on a towel just in case of accidents. Make sure you have some pads , don't get too many, you might not need them. Might be worth asking about when to start the rigorous PFE regime.

I waited 4 months for my OP and did PFEs for a long time before the op so I expect the muscles were well toned.

You will quickly learn to tense those muscles before standing. In the weeks after surgery I passed a bit of blood at the start of the stream or the end of the stream.

Hope all goes well.

Thanks Chris

User

Posted 24 Mar 2021 at 22:53

Superb advice. Thanks. Will report back.

User

Posted 24 Mar 2021 at 22:56

. . . Had to Google TWOC. I get it now! 😎

User

Posted 25 Mar 2021 at 14:42

Your progress sounds good. Door to door in 29hrs is pretty brisk. They must have thought you well or perhaps you had extreme flatulence and they wanted shut. 😀

After catheter removal you may go walking but beware that every step could be causing a small leak that soon fills up your pad. You might notice as the pad gets heavier then you get a wet feeling. We walked one mile when I realised and the walk back was soggy. Luckily my wife had a plastic bag in her car to put on the seat. From then I always had spare pads.

They say you start dry at night, then dry at night and in the morning, then the dryness lasts longer until you're fully dry. For me it was going on for 3 months to fully dry but occasional leaks on bending, lifting or laughing etc but I kept wearing pads just in case and because I'd bought a lot. In the end I gave them to a charity shop.

All the best, Peter

User

Posted 25 Mar 2021 at 22:10

Good advice Peter, thank you. With regards to the 29 hour turnaround, I guess the Robotic surgery helped in that I had very little abdominal soreness and was able, the following morning after surgery, to complete the required laps of the hospital in quick time. I think my fitness levels helped too as, dare I say it, I’m no slouch on my bike or on foot - heart and lungs in good shape etc.

With regards to TWOC, On a couple of occasions forgotten about the catheter and ’kegeled’. I could feel the muscle gripping the tube so I guess, hopefully, they’re ready to go to work. But I’m prepared for all eventualities with pads for my underwear and a bin liner for the car seat.

One final note, through from diagnosis to treatment and then onto prognosis (after pathology and PSA in 5 weeks), my wife has been the most tremendous support. We have been married for many years and tackled everything as a team. She has had thyroid cancer too, twice in fact, and remains under surveillance for recurrence a third time. So we’ve been down a few roads. But, prostate cancer and the treatment risks throws up new hurdles. We’ve researched the ED enigma and expect a long wait for a return to some sort of normality, but we now how to skin cats in other ways. My point is, it’s a couples disease is PCa, my wife has gone a long way to allaying any anxious moments were her love and faultless care.

I’ll report back after the TWOC

User

Posted 25 Mar 2021 at 22:29

Please be careful Marty. You might be fit as a fiddle, but they stitch everyone up with the same thread, and they probably bought it at Woolworths.

Wishing you the best, it is an impressive recovery so far, but don't push it.

Dave

User

Posted 25 Mar 2021 at 22:52

. . . And just read your narrative Peter. Thorough is word that springs to mind. Are you a forensic scientist? Very informative, thank you, and the links and data at the end, excellent.

User

Posted 25 Mar 2021 at 22:55

Again, wise words Dave. Worry not, my agenda is well scripted - to include doing very little indeed In the coming few weeks.

User

Posted 26 Mar 2021 at 14:34

Thanks for the kind words which are encouraging Marty. I need a prod every now and then, to check it's still valid.

When writing it I focused on events and myself. Looking back my memories include a lot of faces of other people. One of my biggest regrets is not taking the address of the bloke in the next bed. I've often wondered how he got on as he was very ill. I might add a section on that. All the best, Peter

User

Posted 26 Mar 2021 at 16:34

So, R&R, no bikes, no lifting, targeted Kegel work starts tomorrow in earnest.

Pathology and PSA 29th Apr.

User

Posted 26 Mar 2021 at 20:15

Marty

Fantastic news. Using a pad for a while is a good idea, you may get the odd unexpected leak from a sneeze or bending down.

Thanks Chris

User

Posted 29 Mar 2021 at 08:47

Cheers.

User

Posted 29 Mar 2021 at 09:46

Hi Marty,

I was around five weeks post op when my flow sorted itself out, up until that point it was fairly intermittent and I was passing a lot of debris. I'm well over a year on now and it's all good.

Good luck.

Kev.

User

Posted 29 Mar 2021 at 10:24

Thanks Kev, all the best to you.

User

Posted 29 Mar 2021 at 15:58

Marty

Glad to hear you're fit and well....and hope ok for the future

I'm also reasonable fit and well - before covid gym 3-4 times a week but since the lockdown etc its been walking and running most nights for a good hr...possible put on a few pounds.

I've been diagnosed T2a NO MO but have a gleason score 9 one side - so I'm apparently high risk.

I think the best option is surgery

Can I ask a couple of questions

1. What was your gleason score when you found out about the cancer

2. Where did you have the surgery

3. How long did you have to wait till surgery

4. Did you have any hormone treatment in the interim before the surgery

5. Could you chose the consultant surgeon or was one assigned to you

6. Did you consider private treatment

Cheers Joe

Edited by member 29 Mar 2021 at 15:59 | Reason: Not specified

User

Posted 29 Mar 2021 at 16:21

Your bladder is a muscle and while you had a catheter it wasn't being exercised. That could be a reason for flow not to be too big.

On the other side, I don't know if you feel like it's being constrained but if it doesn't heal properly it is possible to get scar tissue that constricts flow. It's one reason to take it easy and not strain the wounds. Scar tissue only develops after a few months normally so it's probably not that now but there is plenty of healing to be done.

I don't recall how mine was straight after TWOC but I do know that flow is now huge. Removing the prostate is like removing a narrow pipe and fitting a big one to the tank.

Edited by member 29 Mar 2021 at 16:25 | Reason: Not specified

User

Posted 29 Mar 2021 at 20:22

Marty

As mentioned there is still probably debris slowing things down and possibly still a bit of swelling. So don't worry just yet, watch out for signs of an infection, smelly urine etc.

There are a few of us on here who had issues with migration of surgical clips and strictures or scar tissue problems.A few months post op a cystoscopy found a hem o lock clip floating around in the bladder, later another clip had migrated into the Urethra. It is supposed to be quite rare, but not as rare as we are led to believe.

I got rather obsessed with monitoring my average urine flow. My first indication of an issue was smelly urine.

Thanks Chris

User

Posted 30 Mar 2021 at 09:53

Thanks for the advice - love this forum.

Here we go in answer to your Qs:

2. Nuffield Cambridge Hospital - 18 Mar 21 - My choice through Google - and reputation - linked with the answer in Q5

3. Not long, Biopsy 3rd Feb 21

4. No

5. My Company Scheme is footing the bill

6. Yup, I elected for the Surgeon who leads the Cambridge team. Due diligence, through contacts, revealed has Don status amongst DaVinci specialists. Superb . . .

Best to you Joe, and everyone else too

Marty

Edited by member 30 Mar 2021 at 10:06 | Reason: Cocked up my answers! 😂

User

Posted 30 Mar 2021 at 10:15

Marty
Thanks for your answer - much appreciated

One more query - sorry to be a pest- how long did you wait from option to have surgery to having it done??

They are telling me it might be 6-8 weeks at University College London

Cheers
Joe

User

Posted 30 Mar 2021 at 14:38

You ain’t a pest Joe, were all in this together. I acted quickly because I was fortunate to have the private route available. From Biopsy Result to Da Vinci Robot was just under 5 weeks.

User

Posted 31 Mar 2021 at 09:37

Marty - thanks mate for the information - lets hope we all get through this - glad youre on the mend... me next?

Cheers

Joe

User

Posted 04 Apr 2021 at 07:39

Lucky to have had double nerve sparing op. Thoughts are moving to ED, but not before full pathology report etc will I start down the full penile rehab route.

Hope everyone is well. Bio updated to reflect the fact I’ve just realised I could update it!

Edited by member 04 Apr 2021 at 08:04 | Reason: Bio update

User

Posted 30 Apr 2021 at 11:06

Well, yesterday, 6 weeks on from RRP he rang and gave me the news - there was no bad news:

As follows:

Feeling lucky, prostatitis symptoms all gone obviously, bladder capacity growing

SomaErect II pretty good

Hopefully, reaching for the sky again soon

Edited by member 30 Apr 2021 at 11:11 | Reason: Spooling

User

Posted 30 Apr 2021 at 16:30

Great news Marty

Onwards and upwards 😉

User

Posted 01 May 2021 at 21:33

Excellent.

Dave

User

Posted 28 Aug 2021 at 22:11

Back flying

PSA undetectable

Marginal stirrings

User

Posted 30 Aug 2021 at 23:46

All looking good Marty. Just read your flying career in your profile, quite interesting. I stick with gliding. At least nobody's trying to shoot you down.

Edited by member 05 Dec 2022 at 16:41 | Reason: Not specified

Dave

User

Posted 09 Jul 2023 at 20:22

Hi Marty, you may recall, we have communicated via the Veterans site on fb and you recommended this site and many thanks for that. I've read your bio and your story. Respect mate....respect 👍

I'm now 4 days home from RP. Reality has certainly kicked in. Hating the catheter and wee bags routine. TWOC due next Wednesday 12th. My main immediate concern is the incontinence bit. How the hell can someone who fills the night bag each night NOT swamp the bed after the catheter and bags are taken away! How did you cope?

Anyway, take care and once again thanks. 👍⚓️👍

User

Posted 09 Jul 2023 at 20:48

Barry

User

Posted 09 Jul 2023 at 21:53

It started at 3 times a night and now is down (after 7 weeks) to twice or sometimes just once.

User

Posted 09 Jul 2023 at 22:10

Before diagnosis and surgery I would never produce 1500 mls overnight. I suspect the catheter has an effect on urine production.

Having said all that I was 99 percent dry 4 days after catheter removal.

Instilagel or hydrocaine will help relieve discomfort in the penis. I always made sure I was well hydrated before my twoc particularly important in the current hot weather.

Hope all goes well.

Thanks Chris

User

Posted 10 Jul 2023 at 14:30

Hey Sam, you read my Bio, nice one. Old Crabfat here has done some aviation over the years I can tell ya’ . 😂

Edited by member 10 Jul 2023 at 14:32 | Reason: Not specified

User

Posted 29 Jul 2023 at 12:19

Hi again Marty, thanks for that. Well I'm just over 3 weeks post op now. The TWOC went OK albeit I was a tad nervous having the catheter removed dead on 7 days from surgery. The nurse who removed it was very good however, the flood gates opened and I thought crikes wtf I can't stop this! After I got home though things settled. Flow rate has been good which I'm relieved about after reading your probs. I am practicing stop start when urinating to aid control. Pelvic Floors....sigh what faff but needs must eh. The nurse said do 15 minute sessions 4 times daily which I'm doing. I'm not wetting myself and dry mostly at night but ohhh the involuntary dribbles during the day are doing my head in. My wife Kathy says it's still early days and that I'm too hard on myself. Doing the walks and some very light stretching exercises. The bullet wounds have healed without any issues. Started applying vaselin on the scars. I'm still awaiting results from the consultant with the histology report but a letter came through stating a telephone appointment had been made for 21st August, which I find is quite lengthy (7 weeks after surgery). How long did you have to wait coz that's mental torture in my book! Anyway, as we warriors say....onwards. All the best. Sam

Edited by member 29 Jul 2023 at 12:39 | Reason: Spelling mistakes

User

Posted 29 Jul 2023 at 12:33

My histology consult was 6 weeks post op so you are on the same schedule.

User

Posted 29 Jul 2023 at 12:49

Hi Steve, thanks for that. The trouble I'm finding is that these dribbles are involuntary and they just creep up unsuspected. Mainly when I'm either standing or getting up from a seated position. Have you any idea why this is happening coz even if I empty my bladder, a minute or so later....dribbles occur! Very frustrating.

User

Posted 29 Jul 2023 at 14:17

It really does improve over time - but yes, it's frustrating and thank goodness for Tena :)

Edited by member 29 Jul 2023 at 14:20 | Reason: Not specified

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