Newbie in tongue cancer no man's land.

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Greetings. I'm an older guy, Scotland, otherwise fit, but with a long standing lichen planus, then hyperplastic candidiasis, lesion on the side of my tongue. Over Christmas and the New year this started to change rapidly and grew into a cauliflower like mass proud of the tongue. 

My consultant says it is cancerous; the growth was biopsied 2 days ago and I get MRI and CT scans this coming week. I am told to prepare for surgery to excise the growth and a part of the tongue, and that decisions around treatment options re possible spread to the nodes will be discussed when they have the scan results.

It feels like I'm drifting in space, the growth is enlarging, I'm on codeine, just swallowing pureed soups, tea and miso. They say humans can adapt to most things over time, and I do accept that things will never be the same again. It feels like a loss. I dread what is coming. Any thoughts readers from people who have been through this? Thanks

  • Hi 

    70 years old and recovering from tonsil cancer, treatment was challenging as was recovery,.. treatment in Ninewells Dundee 

    We do adapt to our new normal, takes a lot of inner strength and lots of support .

    Others with more knowledge of your condition will be on the forum soon, hopefully they can offer some advice 

    Peter 

  • Hi  and welcome. 
    my nearest neighbour at 85 years old is a lifelong lichen planus sufferer and had a cancer resected from her tongue five years ago. She is doing really well. There was no lymph node spread 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Hi Kiff. I was 61 when diagnosed now 67   Best advise I can give for now take a notebook and pen with you write down what consultant says anything you don’t understand don’t leave until you’re clear in your own mind. Plus if you can,take someone with you another pair of ears helps. Fingers x for you 

    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

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi,

    sorry yiu are going through this.

    I wasn't going through something 100% similar, I was diagnosed with cancer in the tongue that was detected from the lesion on the side of my tongue but didn't need pain medication before the biopsies and surgery but I am based in Scotland too if you'd like to DM me. 

    *****

    Non-HPV tongue cancer T1N0M0? 
    Diagnosed Nov 2024.

  • Thank you people for your helpful and supportive comments, I'll be back here on the forum, I think, when things are a bit clearer. Best wishes to all..

  • I had surgery for tongue cancer 1 year ago, didn't need any additional radio/chemo

  • About to go through same

    stage 4

    not eating much as swalllwing is fifficult

  • Very sorry to hear what you are going through, Spencerbear. All this waiting, uncertainty and limbo-land is very difficult. I guess we have to hope that a clear treatment plan is developed quickly and that we come out on the other side of surgery-and after recovery- to a period of stability with a reasonable, an acceptable, quality of life. Things will not be easy, or the same as before, I know. Best wishes