Removal of lymph nodes - have any of you not had this done?

Hi Sasha

I had primary cancer of the tonsil, with spread to one lymph node- i had no surgery at all, even for the known primary (the tonsil) instead i had 30 radiotherapy and 5 chemo.

My lymph node was also by the carotid artery, perhaps that is why ?. I too wondered why they didnt do surgery and i put it down to covid (i had no explanation)

If it is any reassurance,  my pet scan showed a complete response.

Trev

Hi Trev

Thank you - and yes that’s what I was wondering; if they haven’t done the op due to covid.

My Oncologist has been pretty up front and I hope he would have said that but I’ll ask him when I see him next.

Sasha

Similar indications to you.  In the end I had my tonsils and all my nodes on the RHS taken out, but that was mainly because they could not detect the primary and they wanted to look for spread and remove the opportunity for spread.

Yesterday they found the primary after 15 months of searching...

I’m sorry Peter what a long journey.  Is your primary tumour treatable? I hope it’s a relief that they’ve found it ? 

Hi Sasha I had no lymph nodes removed snd I had several one too close to spine to operate. At my cancer centre Leeds it’s standard practice NOT to remove lymph nodes then if needed they can be removed after which isn’t often that is needed. So please don’t stress there’s lots on here who didn’t have prior removal and like me are fine 

hope thus helps 

Hazel xx

Hi Sasha, hazel's post has reminded me of something.

I have an appointment with a surgeon in just under 2 weeks, my consultant did say the surgeon would 'decide whether to remove my lymph nodes as a precaution'

So as hazel mentioned perhaps some trusts do not remove them as standard practice unless necessary

I imagine deciding on the various treatment options is a balancing act for doctors, weighing the risks and potential damage to quality of life against the chance of cure.

Thanks Trev and Hazel.

Yes I got the impression that my oncologist and surgeon followed this path as standard practice.  I will double check when I see the oncologist on Tuesday.  I have a good friend who is an anaesthetist and she was very surprised that they weren't removing the lump and also made sure I asked them about this.

The oncologist did say they may take it out in the future if it hadn't shrunk but this is rare.

Thank you.  

SLJ65 said:

Thank you - and yes that’s what I was wondering; if they haven’t done the op due to covid.

Please don’t stress Proximity to vital structures is the reason not Covid and the fact that RT is effective against metastatic nodes. 
It would have been a clinical decision and I’m sure your MDT have a better idea than your anaesthetist friend. 
The trouble is that since hospitals have got so busy with coronavirus cases communication breaks down. Have a word with your oncologist. I’m sure he will put your mind at rest. 
I had no neck dissection either and 2years later I’m still here 

Thanks Dani.

Also wanted to say thank you for the exercises to help with lymphodema on your blog - I've been using them and they have been really helpful, I can see an improvement already x

Now that’s brilliant. I added a bit to my post. Back up care has been a little lacking and people aren’t being seen as they should by support teams in a lot of places.