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Questions to ask surgeon about RALP

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User
Posted 15 Jun 2022 at 06:37

Morning all,

I’m seeing my surgeon this afternoon to discuss RALP coming up. What should I ask?

cheers

Nick

User
Posted 15 Jun 2022 at 08:33

Hello Nick,

I'm assuming you've been through the process of looking at all your options and are comfortable that RALP is the right option for you (as best you can!). If not, then here's the chance to ask your surgeon further about why he feels RALP should be for you based on things like your scores, image results, probable side effects etc.

If the meeting is more about your RALP operation then I'd break things down into what's going to happen pre-op, during the op and post op, both in the hospital and for the first couple of weeks when back at home. 

Nearer the time you'll find loads of support on here covering making the experience as "comfortable" and hopefully as short as possible!

Flexi

 

 

User
Posted 15 Jun 2022 at 13:57
I went into my consultation with a page full of questions and every, single one was answered before I could actually ask them. He also raised many things that I hadn't even considered.

The difficult thing for many people will be interpreting and weighing-up the absolute barrage of statistics that will be unloaded on you.

It relates to a different cancer, but this very point was discussed in the recent and very excellent BBC documentary with Hannah Fry.

I would thoroughly recommend watching this before your visit:

https://www.bbc.co.uk/iplayer/episode/m0017wzq/horizon-2022-making-sense-of-cancer-with-hannah-fry

User
Posted 16 Jun 2022 at 07:01

T3B if it's in your seminal vesicles

Probably looking at radiotherapy and 2 years of hormone therapy. Maybe chemo too. Suggest you see an oncologist as well as a urologist.

User
Posted 16 Jun 2022 at 09:15
Golden rule of cancer treatment don't assume anything!
User
Posted 16 Jun 2022 at 12:33

You should talk with oncology. You might also want to ask oncology about HDR Boost (a combination of high dose rate brachytherapy and external beam radiotherapy.

If you were 10 years older, they would probably recommend RT+HT. However, as you are only 50, they might still consider prostatectomy, but with a raised expectation that you might need RT afterwards.

User
Posted 16 Jun 2022 at 15:33

I am also 50 and also had high risk cancer due to very high PSA.  But all scans for spread outside the prostate were negative.  The recommendation from the MDT was for non nerve sparing open surgery with lymph node dissection.  So a more aggressive prostatectomy than normal but still the surgical route.  As Andy says age was a factor in that decsion and perhaps a similar approach may be on the table depending on what your MDT decide.

Best wishes.

User
Posted 16 Jun 2022 at 17:57

Good news!  For me there was less cancer than suggested by the biopsy so hopefully you get a positive break when they have a look around.

I went from first PSA test in mid Jan to RP at end of April, so all the timelines seem to vary. Very glad to get it done and move on to recovery.  A few tough weeks but you will get through it.

Edited by member 16 Jun 2022 at 18:00  | Reason: Not specified

User
Posted 16 Jun 2022 at 18:07

Good to hear it went well for you Jellies. I’m anxious but it could be considerably worse!

N

User
Posted 26 Jul 2022 at 11:49

It’s all stressful enough without Covid adding to it. Hope you get your operation as soon as possible.

Ido4

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User
Posted 15 Jun 2022 at 08:33

Hello Nick,

I'm assuming you've been through the process of looking at all your options and are comfortable that RALP is the right option for you (as best you can!). If not, then here's the chance to ask your surgeon further about why he feels RALP should be for you based on things like your scores, image results, probable side effects etc.

If the meeting is more about your RALP operation then I'd break things down into what's going to happen pre-op, during the op and post op, both in the hospital and for the first couple of weeks when back at home. 

Nearer the time you'll find loads of support on here covering making the experience as "comfortable" and hopefully as short as possible!

Flexi

 

 

User
Posted 15 Jun 2022 at 10:53

Thanks Flexi. Yes, I’ve had the discussion with the nurse about options and they were this or RT. I’m 50 so RALP seems like the best route.

There are three surgeons who do these procedures at my hospital and I believe mine has the most under his belt, so I hope he’ll have all the answers.

Thanks again,

Nick

User
Posted 15 Jun 2022 at 13:39

Hi Nick,

I guess most men want to know if any nerves will be spared in the procedure. I think it gives better chance of erections returning after RALP, no guarantees though. My husband had 50% nerves spared as it was just the left side where the cancer was. If there was any risk that it would not clear all the cancer though we just wanted it all gone.

Also and probably more important, how likely is it you will regain urinary continence? Again we were told it was very likely he would not regain full continence (mainly as he was older) but he was really great straight away and fully continent within 5 months….so really lucky! 

There are different procedures used for the op neurosafe frozen section is one. Might be worth asking if this is something they do at your hospital.

All the best for your appointment 

User
Posted 15 Jun 2022 at 13:49

The only hospital routinely doing neurosafe frozen sections on the NHS as far as I know is the Lister at Stevenage. Several private hospitals do it and there is also a randomised trial running on the NHS too. (Most NHS hospitals don't have histology on their main site any more, which makes Neurosafe impossible.)

Another option it if the surgeon uses Retzius Sparing technique which generally gives faster (sometimes immediate) return of continence, although at a year out, it doesn't make any difference. A small number of NHS hospitals have surgeons doing this (Guildford, Reading, UCLH, probably more), but there are probably no more than 10 Retzius Sparing surgeons in the country.

User
Posted 15 Jun 2022 at 13:57
I went into my consultation with a page full of questions and every, single one was answered before I could actually ask them. He also raised many things that I hadn't even considered.

The difficult thing for many people will be interpreting and weighing-up the absolute barrage of statistics that will be unloaded on you.

It relates to a different cancer, but this very point was discussed in the recent and very excellent BBC documentary with Hannah Fry.

I would thoroughly recommend watching this before your visit:

https://www.bbc.co.uk/iplayer/episode/m0017wzq/horizon-2022-making-sense-of-cancer-with-hannah-fry

User
Posted 15 Jun 2022 at 16:36

We watched this and found it really interesting.

Edited by moderator 16 Jun 2022 at 11:10  | Reason: To try and resolve formatting issue.

User
Posted 15 Jun 2022 at 20:12

Thanks all. I watched that doc when it went out. Wasn’t quite sure of the point she was trying to make, other than arm yourself with intel. Moving and well made though.

Anyway, the meeting with the surgeon wasn’t quite as expected. My recent PSMA PET scan picked up more cancer than the original MRI back in Jan, now in the seminal vesicles. So instead of going in to discuss the ins and outs of surgery, we have to wait (again) so he can speak to the radiologist and decide if I need another MRI or if it’s worth going for surgery. The issue is whether or not the vesicles are full of cancer, in which case he can’t operate as he won’t be able to remove them; or if it’s safe to go ahead with surgery. I think RT is the other route.

Depressing and frustrating but par for the course: expect the unexpected!

Cheerfulness in the face of adversity, as they say in the Marines.

Nick

User
Posted 16 Jun 2022 at 06:22

Does my grade go up from T2c/T3 as the cancer is now in the seminal vesicles?

If RALP is no longer an option (still a big if), what would be the most likely treatment? RT?

thanks

User
Posted 16 Jun 2022 at 07:01

T3B if it's in your seminal vesicles

Probably looking at radiotherapy and 2 years of hormone therapy. Maybe chemo too. Suggest you see an oncologist as well as a urologist.

User
Posted 16 Jun 2022 at 08:21

Thanks francij1. I suppose that if surgery isn’t possible, someone will organise an oncologist appt? Or would I need to push for that? Like a lot of people I’m new to this game and feel slightly underqualified and out of my depth when it comes to asking for things!

cheers

Nick

User
Posted 16 Jun 2022 at 09:15
Golden rule of cancer treatment don't assume anything!
User
Posted 16 Jun 2022 at 12:33

You should talk with oncology. You might also want to ask oncology about HDR Boost (a combination of high dose rate brachytherapy and external beam radiotherapy.

If you were 10 years older, they would probably recommend RT+HT. However, as you are only 50, they might still consider prostatectomy, but with a raised expectation that you might need RT afterwards.

User
Posted 16 Jun 2022 at 15:33

I am also 50 and also had high risk cancer due to very high PSA.  But all scans for spread outside the prostate were negative.  The recommendation from the MDT was for non nerve sparing open surgery with lymph node dissection.  So a more aggressive prostatectomy than normal but still the surgical route.  As Andy says age was a factor in that decsion and perhaps a similar approach may be on the table depending on what your MDT decide.

Best wishes.

User
Posted 16 Jun 2022 at 15:56

Thanks guys, quick update. Two oncologists say it’s ok to proceed with surgery. Phew. My guy may still find something in the seminal vesicles which means he’d have to retreat and leave it all there, ready for other treatment. But he’s going to cross that bridge…

I have faith in him, highly experienced and great results. 

I first saw the GP in Nov, first (bone) scan Christmas Eve, so it’s good to be getting on with it.

N

User
Posted 16 Jun 2022 at 17:57

Good news!  For me there was less cancer than suggested by the biopsy so hopefully you get a positive break when they have a look around.

I went from first PSA test in mid Jan to RP at end of April, so all the timelines seem to vary. Very glad to get it done and move on to recovery.  A few tough weeks but you will get through it.

Edited by member 16 Jun 2022 at 18:00  | Reason: Not specified

User
Posted 16 Jun 2022 at 18:07

Good to hear it went well for you Jellies. I’m anxious but it could be considerably worse!

N

User
Posted 26 Jul 2022 at 06:24

I managed to get Covid so the op was postponed. Unfortunately this coincided with a rejig in the operating theatres.

Since the start of the pandemic I believe that they won’t operate for seven weeks after a Covid all clear, due to the risk of breathing issues. I think the rules are a little more relaxed now, but I still may not get in for my op until 28th August due to the cancellations arising from the theatre rejig.

I know there is very little I can do about this delay and sympathise with those who need treatment more urgently. But I’m now in a weird state of limbo, denial, frustration, anger, resignation and FFS/WTF. fingers crossed I can get in sooner.

User
Posted 26 Jul 2022 at 11:49

It’s all stressful enough without Covid adding to it. Hope you get your operation as soon as possible.

Ido4

User
Posted 26 Jul 2022 at 11:57

Thanks Ido. Yes, there’s my own Covid (thankfully gone now) but also Covid that’s rife in the hospital. We’re not out of the woods by any stretch, goodness knows what winter will bring!

 
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