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1st Consultant appointment post surgery

User
Posted 14 Dec 2020 at 21:25

Hello


Recently had RALP surgery after diagnosis from PSA 3.8, Gleason 7 with T2, N0 & M0.


My first meeting with consultant since surgery is Wednesday 16/12, not sure what to ask?


Been told my PSA is today 0.005, so good news!


What would you ask, other than the obvious.... did you get it all etc etc??


 


Thanks

User
Posted 14 Dec 2020 at 22:44

Just as an example, these were the questions on my list. Some may apply to you, some won't. May give you some ideas though. Obviously a lot of mine revolve around cycling...


Can I have a copy of the pathology results? email is fine


You said you'd done some nerve sparing on both sides. I think the original expectation was unilateral. I'm curious what made you change tack?


Some people on prostatecanceruk forums think (and were advised) that you should wait a lot longer than 6 weeks to ride a bike if you've had nerve sparing. Is there any substance to that or is it just opinion/out of date info?


I'm at 12-ish miles 40ish minutes. I'm holding myself back deliberately. How quickly can/should I ramp up the cycling volume?


How long until I should do 3+ hour rides?


Is there anything I need to watch out for/be careful of?


What do you think the acute pain on 15s urination was after TWOC1?


 


In the end I didn't get to ask them all, but it didn't matter. If you list them in order of most important first, the ones you most care about will be done. And in case anyone's wondering. His answer about how much I should cycle was "Your perineum will let you know if you overdo it." 

Edited by member 14 Dec 2020 at 22:47  | Reason: Not specified

_____


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


Prost was the strongest, so Prost ate Ectomy.

User
Posted 14 Dec 2020 at 23:18

Great PSA result Wombat 👍🏼


These were some of our questions:-


Were margins clear?
Has Gleason score changed, has T staging changed/what is it?


Did you remove any lymph nodes, how many? 
Did you save nerves bilaterally? 
Are you prescribing PDE5 inhibitors?


Will you request that my Gp practice checks my PSA every 3 months for the first year?


 

User
Posted 14 Dec 2020 at 23:25

Hi Wombat,


It can depend on whether your surgeon is talkative, or who-ever you see as I've never seen my surgeon since the pre-op interview.  But he's a great guy.


It can also depend on what you want to know.  I thought of asking for the lab report but decided I didn't want it.  Ignorance can be bliss.   On the other hand you might find something to worry yourself and them about.


He opened with there's good news and bad news.  The good news is the margin is negative, although to me that's always sounded negative when actually it's positive.  The bad news is it's upgraded to 4+4.  Just to add spice he said that's a mighty serious disease you had, it was a good job it was cut out, or words to that effect.


Margin is a key indicator as is the final Gleason score.


He then went on to describe how nerve sparing is very touch and go so they couldn't guarantee it.  I've wondered if the lab report tells me more about that and the margin.  As it could say if the tumour is say 1mm from the edge.  I've not worried about that though and I'm not sure if I'll ever want to hold an inquest about it.


Like Alex I had a list but only asked about nerves and tried to expand on what margin meant.


You might query if your psa is really 0.005 as that is very low, lower than I thought they tested to. Could it be <0.05?    That's all I know about mine, <0.05, some people only get told at 0.1.


That's the end of that, good luck. Peter

Edited by member 14 Dec 2020 at 23:26  | Reason: Not specified

User
Posted 15 Dec 2020 at 09:00

Alex


Thank you most helpful. My bike ( with Di2) is safely tucked away in the garage till March as advised to keep off it for three/four months. 


I’ll make a list and see what opportunity I have for asking. 

Edited by member 15 Dec 2020 at 09:03  | Reason: Not specified

User
Posted 15 Dec 2020 at 09:01

Lexi26


 


Great list, I’ll use that also! 


Thanks

Edited by member 15 Dec 2020 at 09:02  | Reason: Not specified

User
Posted 15 Dec 2020 at 09:04

Peter


Again thanks for detailed notes.... looks like I’ll keep the consultant engaged for longer than he expects!


 


 

User
Posted 15 Dec 2020 at 09:44

Great result Wombat. I would want to know final staging too.

Ido4

User
Posted 15 Dec 2020 at 11:16

Hi ,


Excellent result.


Concur with all. I never saw or asked for detailed analysis, as didn't understand much in 2015.


I had face to face about 15 mins with surgeon, his assistant, my wife.  He was excellent.  ED was hardly mentioned.  Ie this was about 2 months post op.   From the folk waiting you got impression it was c. 15 mins an appointment.  Time flew by.


3 Key items I would suggest.


Margins.


PSA


Penile rehabilitation..


As  Peter states, do clarify decimal places and next test, who organises etc. as different protocols.   


Re. Erections/ED.  ? See other posts on here, assuming this is of importance..  plenty of up to date practical and effective advice.


I know we discussed my margins for some time, and how the prostate doesn't have a clearly defined envelope/membrane like most internal organs, so scope to adjust during his surgery. 


He confirmed he hadn't saved any nerves .


All the very best


Gordon


 

Edited by member 15 Dec 2020 at 11:28  | Reason: Not specified

 
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