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Surgery query

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User
Posted 30 Sep 2023 at 09:44

Hi, I was diagnosed back in June. Preliminary diagnosis Gleason 3+4 and T3A N0. I’ve been continually told very cureable.  Little chance of spread as not reached lymph nodes, which put my mind at rest. 
I had the robotic surgery this week. Speaking to surgeon beforehand I again asked about lymph nodes and he said he wasn’t going to go anywhere near them. I had the surgery, whilst in recovery the surgeon said the op went well. Following day 2 doctors came round to sign me off for discharge - I asked them how surgery went, the read the notes and said ‘perfectly’. 
I was feeling very positive. Just out of curiosity I checked my nhs app to see what was on there - it said the procedures were

- radical prostectomy

- bilateral pelvic nodes dissection 

this has got me enormously worried - being weekend no access to the surgeon or specialist nurses. Mind goes into overdrive thinking- is this standard practice for onward prognosis, did the surgeon spot anything he didn’t like? 
this has put me months back in terms of my positivity. I am now thinking the worst. 
I don’t understand why the surgeon wouldn’t have explained why he had to do this rather than simply saying ‘op went well’. 

User
Posted 30 Sep 2023 at 14:29

Hi JimJams, with a T3a diagnosis there is always a chance it has spread to the lymph nodes. Surgeons have differing approaches on this. Some will do speculative removal of lymph nodes during the prostatectomy. Others will only do so if something shows up on a scan prior to surgery. However a negative scan result does not offer any cast iron guarantee the PCa has spread to nodes. Either way the surgeon should have informed you what what the whole procedure involved. Node dissection can result in its own set of side effects which you should have been made aware of.

My diagnosis was T3b. I had 34 nodes removed during the RP. The hystology came back positive on one of the nodes, so in my case it had spread. Don't get too worried about this. You are still very much on a curative pathway. I just think your surgeon needs to improve his/her communication skills. Was the surgery nerve sparing? Chris

User
Posted 30 Sep 2023 at 14:54

Thank you Chris. Unfortunately not nerve sparing. I must admit I am beyond worried.  The surgeon’s communication has been terrible from day 1. I am guessing he found something as I asked him specifically about lymph nodes before op. It’s terrible I found out by randomly checking nhs app. I can’t believe he wouldn’t mention this to me post op. Now the long 8 week wait for results …

User
Posted 30 Sep 2023 at 15:39
Mine was also non nerve sparing and they took out 5 lymph nodes - seems to be standard practice whilst they are in there as they are all located adjacent to the prostate. Mine all came back clear with the histology report, 6 weeks post op.

I did suffer a lymphocele (in my profile) afterwards but after that was drained (almost painless) it has cleared up just fine.

User
Posted 30 Sep 2023 at 15:44

That’s reassuring, thank you 

User
Posted 30 Sep 2023 at 16:01

That is really terrible that you found out the way you did, can’t believe you weren’t informed.

My husband had 14 nodes removed because we already knew one had cancer in. I know some surgeons do it just to be sure and to be able to check for any spread. Try not to over worry as Chris said you would still be on a curative pathway.

Hopefully you can get more info on Monday. Best of luck with your recovery 👍

User
Posted 30 Sep 2023 at 16:10

Thanks Elaine - also reassuring. Hope your husband is recovering well. 

User
Posted 30 Sep 2023 at 19:09

Perhaps clutching at straws a bit,have you seen the letter from the surgeon. My medical record recently said they had performed a colonoscopy when it was in fact a cystoscopy, the got the code wrong.

Could it possibly have been bilateral non nerve sparring ?

Either way don't worry about it. Worrying doesn't make things get better.

Thanks Chris 

User
Posted 30 Sep 2023 at 19:30

Thanks - I did wonder if it was some kind of admin typo. I will check Monday . It just seems so odd he never mentioned in pre op chat or the initial consultation (in fact he said the opposite - nodes were fine). 

User
Posted 01 Oct 2023 at 02:09

I had my nodes out as well, but I guess different to your situation, cos mine was 4+3, with very high PSA.

Both surgeons I spoke to indicated they would do lymph node removal for me.

Luckily nodes were all clear.

User
Posted 01 Oct 2023 at 06:45

Thank you. Glad yours were all clear.  Seems like my surgeon may have done them as a precautionary/investigative step then. 

 
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