Tongue cancer - SCC

Hi Im Lorraine 

I was diagnosed with SCC of the tongue Stage 1 which had spread to the  lymph's in my neck back in September 24.  Since then I have undergone radical Surgery (Glossectomy, free flap to reconstruct my tongue & neck dissection to remove lymph nodes, followed by 6 weeks of gruelling radiotherapy.  Consequently I am now 5 months post radiotherapy & suffering some intolerable side effects mainly an inability to swallow solid food as the muscle on the left side of my tongue is not functioning efficiently, so have had a feeding tube for nearly 6 months now, also sore mouth, secretions, loss of taste, dry mouth, & of course my speech is not what it was. 
Just  need some reassurance that things will improve really, wondered if there is anyone out there who has been on the same journey and has any advice, tips.  Feeling a bit down at the moment as it feels like nothing is progressing, it is slowly but need to have an idea of healing time from someone who's been on the same journey.  

Be grateful to hear from you. 

  • Hi Lorraine,

    I am just setting out on this crazy journey, but I wanted to say hi. Another traveller posted recently about tongue cancer and was concerned about being able to sing. Mine looks like it is lung cancer, so a different approach but everyone here is very helpful and kind. First let me say that you have been awfully brave and I genuinely feel for you with all the side effects.

    A recent BBC article mentioned a new drug being used both pre and post op for tongue cancer. I will try to find the name again. A lady mentioned in the article had benefitted from reconstruction of the tongue using muscle from her left arm. I found that inspiring and just a bit mind-blowing. I hope they find ways to help you to a full recovery.

    Best of luck to you on your journey, and welcome to the chat.

  • It's called Pembrolizumab, given before and after surgery to "prime the body's defences" (check out the BBC article).