So the results are in....

Oh Gene sorry to hear that.  It’s a lot to process as it’s quite drastic surgery but they will look after you in hospital. I guess you’ll be in ITU for a few days then moved to a normal ward. Do you have dates yet? 
Have you contacted Young tongues on their social media page? That’s a good place to get info and support in the first instance. Most of the members have gone through what you’re about to. 

Best wishes. 

GeneS said:

Going to need a right had side of tongue removing, double neck glossectomy and the requisite grafts etc.

I think you mean neck dissection. The surgeons are pretty skilled at hiding the sutures in your neck creases so scarring should be kept to a minimum. You’ll need some physio afterwards but all that is in the future. 
My friend Panch has recovered brilliantly from a hemiglossectomy so hold onto the fact that all this is doable. 

Hi there.

Mine was “Stage 1”, MRI/CT showed “Stage 2”:and it ended up being Stage 3. Hemiglossectomy with reconstruction (unusually) from my calf.

I only had a neck dissection on one side (have they done a little biopsy on your neck under ultrasound?)

If it’s really large, re is the possibility that they’ll do a “split jaw”, but that’s only in extreme cases.

Anyway, knowledge is power so feel free to Private Message me with anything you want to know xxx

PS - I was eating in a Michelin star restaurant 6 months after my treatment ended!!

This is a helluva lot to process GeneS. My warmest wishes to you. Hang in there x

I can't say about the glossectomy as mine was abandoned before they took bits of my tongue, but I have had 2 neck dissection, both on the right, and you would be hard pressed to see the scars.  They are very careful nowadays.  You may find some longer term side affects from the dissections in relation to muscles - face and shoulder generally.  I had some issues with my shoulder, but time and physio resolved to to almost back to where I was pre surgery.

Thank you for the kind offer, will probably take you up on that. No, not had ultrasound as yet.

No, not got any dates yet but consultant is VERY keen to get it done

OSCC can spread quite quickly, so the sooner, the better - especially if you are in pain x

So I am on the waiting list, apparently "top" of my consultants, so I presume I will get started on pre-op tasks in the next few weeks. Pain has increased but still manageable... Nurse specialist has reassured that it won't grow exponentially in the mean time.... hope that is the case!