Hello

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Hello everyone. I had a resection to remove an SCC from my tongue in 2010 which was successful and didn't require any RT or CT. The whole thing was sorted in five weeks and I was talking and eating normally within three months. I know I got off very lightly. I thought that was it.

Everything was going fine with annual check-ups and the odd biopsy until 5 weeks ago when I suddenly had a lump in the middle of the previously damaged side of my tongue. Diagnosis is another large SCC which will necessitate the removal of approx. 2/3 of my tongue, reconstructive surgery and CT. 

This has hit me like a ton of bricks especially when they started talking about feeding tubes. I know absolutely nothing about these and would like to know how long they are needed for and roughly how many patients permanently have them.

Any insight anyone can give will be very greatly appreciated. 

  • Hi ginge 1969

    Sorry you’ve found yourself on here we are a small friendly group always happy to help. I’m Hazel 6 years post radiotherapy and chemotherapy for tonsil cancer Hpv 16 positive.  with several affected lymph nodes. Happily living my life. 

    Treatment is hard and recovery can  be challenging. 
    I see Panch has replied the group she suggests can help as well  

    My blog link below might help. 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

  • Hi, truly sorry you are going thru this again. I had a PEG feeding tube for 8 months. Base of tongue cancer, radiotherapy plus chemo for 8 weeks daily. The tube saved my life. 1500 calories a day plus all drugs thru the tube. Wasnt that tricky to get used to, and was well looked after by community nurse as well as when having treatment. I couldnt eat…so please try and embrace it. Wishing you all the very best x

  • Hi   welcome to our community. I've spotted your earlier posts elsewhere. How are you?

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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