Partial tongue removal - I am so worried

Hi Lanclassie I am female 65 and diagnosed with SCC right side of tongue T1N0M0 at the end of 2023.

my surgeon decided to do both procedures at the same time so surgery on 7/12/23 for removal of tumour and sentinel node biopsy.

The previous day I had scans with dye to identify which nodes the tumour was potentially draining too. Surgeon had the results the next morning in time for the procedure.

All went well approximately 2 hours. Surgeon told me he would remove one third of the right side of my tongue. I did have stitches but in general was not in a lot of pain other than when eating and drinking. Did have some throat and ear pain for about a week. I still have a lot of numbness and tingling but have been told this could last for up to a year before new normal is established. All very bearable.

i was very anxious about speech and swallow but very pleased with results. Swallowing ok but still need to be a bit careful with very dry foods as I still have numbness and badly scratched my throat on a couple of occasions. Speech is fine apart from when my tongue is very tired and then I have a slight lisp. Again recovery is ongoing.

follow up for 5 years now.

wishing you all the very best and try not to worry to much I was very much reassured that at my stage similar to yours they were aiming for cure. Don’t know where your tumour is but no one else would be able to see there is a bit of my tongue missing.

Nice to hear how you are doing Teee7.

wishing you all the best for your continued recovery 

Great to hear how your doing Teee7.

thank you so much for this so reasuring - thankyou again

I’ve written this 3 times and not sure where it’s going .

my excuse is just coming off night shift.

its so good to hear you’re doing well and continuing good wishes for recovery.

Joli93 ha! three times is fine! Yep, recovery going well - numbness is getting less, but tingling is still present, and showing no signs of diminishing, Uncomfortable to the point of painful at times, but I figure it's good pain if the tongue is regaining sensation.

Hi there sweetheart.

My surgery was in October 2020. Estimated to be T2, but it ended up being bigger than expected and was revised to T3.

My lymph node biopsies were clear, but tbh, the protocol is nearly always to do a neck dissection on the affected side as a matter of course. Cancer can lurk, even tho post surgery mine were v fortunately still clear. My reconstruction unusually came from my left calf!

Oral scc is a really aggressive cancer, so the sooner you can have the surgery, the better.

It’s not a pleasant operation but it is basically life saving.

I’m in NW London, but am originally from S Wales.

I have put together a fact sheet about all I wish I’d known about diagnosis and surgery, which I’m happy to let you have.

I speak with a bit of a lisp, but was eating in restaurants within 6 months

I shall PM you xxx

Panch said:

I speak with a bit of a lisp

I don’t think you do. At least I don’t notice.

Hi Panch

Thankyou so much - Iam definently going ahead with the surgery as planned.  Just problem with the possibilty that the sentinel node biospy cant be done due to maintence - put hopefully all will fall into place.

Would love to hear from you.

Many thanks xx

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