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Hi all,

In May last year I was diagnosed with stage iv SCC in the tongue (T4 N2b M0). I had a total glossectomy in August 2019, neck dissection (79 nodes removed), split mandible, 10 teeth removed, radical free form flap and a skin graft. I was 39 and told I would never speak again and that I would need a permanent trachie and permanent feeding tube.

I've had 33 fractions of radiotherapy, 2 chemo (cisplatin) and 12 immunotherapy (2 pre surgery and 10 post) and I lost 7 stone in weight.
 
13 months on I no longer have a feeding tube or PICC line, my trachie was removed 1 week after my surgery, I talk with a speech impediment and I can eat a roast dinner (I just need lashings of gravy and a lot of water). It was hard work, so much hard work. OC recovery is 100% a marathon.


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They sent my results and scans to a professor in Europe who advised that the further surgery would be over treating me at that time.

The new lesion, well when I say new it has been there for about 2 months, is so very painful and appears to be growing in size. I have my appointment at Guys on Friday and am anticipating that they will request a biopsy and possibly a CT. It’s all very worrying tbh. 

 

 

Hi Naomi,
Welcome to the group. You're in the right place.
Roast dinners are the best though, and everyone can relate to them. Radiotherapy is awful, and so are the weeks afterwards. I've never felt so uncomfortable and annoyed at my own body as I did getting through all that. Well done for going through it all, it's such an achievement.

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