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RALP booked for the 11th Feb! Gulp!

User
Posted 28 Jan 2021 at 12:01

I haven't posted for a couple of months about my cancer, it's been whirlwind of tests and then sitting in limbo waiting. Some of you might have seen my post back in September/October time when I was diagnosed with intermediate 4+3 cancer and I was researching treatment options. I looked into HIFU (focal therapy) and although the potential side effects are less and also the chance of maintaining sexual functional are higher there also seems to be more cases of recurrence in the remaining prostate with potentially more surgery either HIFU or more complex salvage prostatectomy in the future.


After discussions with the surgeon a Charing Cross it was decided that nerve sparing RALP would be the best option as I'm only 51 (since last week) and despite having had a double heart bypass three years ago I still have the potential for a good couple of decades of life if I'm lucky. I've had to wait for some reports from cardiology at a different hospital which have finally come through and were sent to them yesterday.


I've just had a call to say that my surgery will be on 11th Feb if all goes to plan and of course I'm now feeling the emotions kick in. The last few months have almost seemed normal, I've no real symptoms and I've tried to put things to the back of my mind which has worked most of the time but not all the time. 


I'm just compiling a list of questions about what's next as I have a call this afternoon to discuss the pre-op tasks. Living four hours from the hospital means I want to get the tests done locally if I can and also as much post op support I hope can be local.


Any advice from RALP patients here? Ideas on things I should be asking?


Thanks, stay safe all.

User
Posted 28 Jan 2021 at 13:31
If you are 4 hours from the hospital don't rush to be discharged.

I was 2 hours away and the journey home was tough, what was worse was the 3 weeks I then spent in a local hospital with peritonitis and sepsis. Local hospital did their best but if I had stayed in in another night it would have been picked up sooner and the NHS communication issues would not have delayed the life saving treatment I required.

Apparently I was one of the surgeons 1% who suffer this complication where they struggle to re attach the urethra to the bladder, leakage from this caused an infection.

Continence a sexual function all now 99% and 95% of what they were and so far undetectable (non super sensitive) PSA so no regrets with my decisions.
User
Posted 28 Jan 2021 at 14:27
Hi, did you have RALP? I've been tossing and turning over which to go for, HIFU, Brachy etc.. Landed on the RALP as I want the best outcome and it seems the best for long term. At 51 years old with a heart issue already I don't want to have more things to worry about.

How long ago was your surgery? How old are you?

Cheers
User
Posted 28 Jan 2021 at 14:39

Originally Posted by: Online Community Member


I'm just compiling a list of questions about what's next as I have a call this afternoon to discuss the pre-op tasks. Living four hours from the hospital means I want to get the tests done locally if I can and also as much post op support I hope can be local.


Any advice from RALP patients here? Ideas on things I should be asking?



 


It would definitely be worth asking if your TWoC (Trial without catheter) catheter removal can be done at a more local urology department. Generally they don't like RARP patients having catheters removed by anyone other than a urology specialist nurse. In Oxford, RARP patients can't be recatheterised by anyone lower than a registrar (although it's very unusual to need it).


Pre-op test are usually an ECG and basic temperature/BP etc and lots of questions. They'll also want to look down your throat visually to check your airway will be OK for the intubation.


It would be a good idea for you to start doing pelvic floor exercises immediately (but stop for the catheterised period after surgery) which should help with your continence. It's also good to be as generally fit as you can.


 

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Jan 2021 at 14:46

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I'm just compiling a list of questions about what's next as I have a call this afternoon to discuss the pre-op tasks. Living four hours from the hospital means I want to get the tests done locally if I can and also as much post op support I hope can be local.


Any advice from RALP patients here? Ideas on things I should be asking?



 


It would definitely be worth asking if your TWoC (Trial without catheter) catheter removal can be done at a more local urology department. Generally they don't like RARP patients having catheters removed by anyone other than a urology specialist nurse. In Oxford, RARP patients can't be recatheterised by anyone lower than a registrar (although it's very unusual to need it).


Pre-op test are usually an ECG and basic temperature/BP etc and lots of questions. They'll also want to look down your throat visually to check your airway will be OK for the intubation.


It would be a good idea for you to start doing pelvic floor exercises immediately (but stop for the catheterised period after surgery) which should help with your continence. It's also good to be as generally fit as you can.


 



 


Thanks, have you had RALP recently? I can't see your profile for some reason.


 


Cheers

User
Posted 28 Jan 2021 at 14:51

Originally Posted by: Online Community Member


Thanks, have you had RALP recently? I can't see your profile for some reason.



 


Yes. I had one in June 2020 and was 50 at the time.


I'm not sure why you can't see my profile? Perhaps something is not working on the site? One thread i was contributing to earlier seems to have become nonexistant as well. Maybe there's an issue?

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Jan 2021 at 14:55

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Thanks, have you had RALP recently? I can't see your profile for some reason.



 


Yes. I had one in June 2020 and was 50 at the time.


I'm not sure why you can't see my profile? Perhaps something is not working on the site? One thread i was contributing to earlier seems to have become nonexistant as well. Maybe there's an issue?



 


Very strange! How are you doing now? I've been doing OK the last couple of months as I've almost been in denial and since I have no physical symptoms I don't feel unwell (apart from my cardiac stuff). It's all just become very real as my appointment letter just arrived in the email.


 


 

User
Posted 28 Jan 2021 at 15:14

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Thanks, have you had RALP recently? I can't see your profile for some reason.



 


Yes. I had one in June 2020 and was 50 at the time.


I'm not sure why you can't see my profile? Perhaps something is not working on the site? One thread i was contributing to earlier seems to have become nonexistant as well. Maybe there's an issue?



 


Very strange! How are you doing now? I've been doing OK the last couple of months as I've almost been in denial and since I have no physical symptoms I don't feel unwell (apart from my cardiac stuff). It's all just become very real as my appointment letter just arrived in the email.



Doing pretty well thanks. Was continent pretty quickly. Only used three pads. Nerve sparing seems to have been successful. I started cycling again after 6 weeks and built up gradually.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 28 Jan 2021 at 15:53

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Thanks, have you had RALP recently? I can't see your profile for some reason.



 


Yes. I had one in June 2020 and was 50 at the time.


I'm not sure why you can't see my profile? Perhaps something is not working on the site? One thread i was contributing to earlier seems to have become nonexistant as well. Maybe there's an issue?



 


Very strange! How are you doing now? I've been doing OK the last couple of months as I've almost been in denial and since I have no physical symptoms I don't feel unwell (apart from my cardiac stuff). It's all just become very real as my appointment letter just arrived in the email.



Doing pretty well thanks. Was continent pretty quickly. Only used three pads. Nerve sparing seems to have been successful. I started cycling again after 6 weeks and built up gradually.



 


That's impressive! Glad to hear, hoping for a good result myself, not much else I can do!

User
Posted 28 Jan 2021 at 20:43

That's good advice about the Trial Without Catheter although I'd expect it anyway.   I was operated on at a hospital 15 miles away after diagnosis at one 2 miles away.  The local hospital did the TWOC and the GP nurse removed my centre of stomach staples.


As Frankij says, make a sensible judgement about how long to stay in hospital.  The surgeon said it would be one night typically but I had a pelvic drain that was still draining quite a bit of blood in the afternoon after the op so I asked to stay another night, which seemed a bit defeatist to me, but common sense took over.  I couldn't imagine where the blood would go if it wasn't draining.


If you've had a heart by-pass the surgeon must think you're strong enough as they slant you head down.


One thing I'd ask is where the post op clinics will be.  You don't want to be travelling a long way.   I have never met the surgeon who did the op since the pre-op interview, he lets his doctors do the clinics and on the day chat.  So I wouldn't get too attached to meeting him/her.


Hospitals do dozens of Prostate ops every year so it's best to go with the flow, they should give you a full list of things you need.  A dressing gown, slippers and earplugs and someone to get you home.   You won't be able to drive.  You'll also have a bag and catheter, spare bags, night bag and stand.  Perhaps anti-coagulant injections, I had 28.  District nurse appears a few days later, although I didn't need her.


Countdown to Feb 11th, two weeks today.  All the best, Peter

Edited by member 28 Jan 2021 at 20:47  | Reason: Not specified

User
Posted 28 Jan 2021 at 21:03

Chris


hope all goes well, remember don't get constipation, drink plenty post op and ask if you can have some instilagel or hydrocaine in case the Catheter makes the eye of the penis sore. Take it easy but keep mobile.


Thanks Chris

User
Posted 29 Jan 2021 at 08:03

Good luck Chris


I had an open prostectomy March 2020. Its all pretty straightforward and I certainly felt a huge sense of relief waking up from surgery having spent a long time worrying about the op beforehand.


I was pleasantly surprised how quickly things returned to normal.

User
Posted 29 Jan 2021 at 09:02

Originally Posted by: Online Community Member
Hi, did you have RALP? I've been tossing and turning over which to go for, HIFU, Brachy etc.. Landed on the RALP as I want the best outcome and it seems the best for long term. At 51 years old with a heart issue already I don't want to have more things to worry about.

How long ago was your surgery? How old are you?

Cheers


Surgery was 5 years ago, I'm 59 now, yes it was a RALP

User
Posted 29 Jan 2021 at 14:47
Thanks to everyone who responded, I'm buried under a seemingly huge list of stuff to sort beforehand. Need to get a pre-assessment done but ideally want that locally so trying to get all the physical tests they need from the Hospital so I can discuss with the GP. Having had various health issues since 2015 I have become used to the difficulty in talking to anyone!

Also need to get a Covid test locally if I can, for my biopsy I had to drive to London and back, 8 hours for a 15 minute appointment because I couldn't get a test here... don't want to repeat that.
 
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