Hello just diagnosed squamous cancer on my tongue.

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Hello 

Im new to your site. Can anybody help me from the beginning of 
being diagnosed - Squamous cancer on the side of my tongue!!!

Im terrified of what’s to come and already getting fed up with people

Saying NOT TO WORRY XXX

  • Hi Clockhouse and welcome to our little community. Sorry you’ve had to find us but stick around. There are lots of helpful people here. Do you have a treatment plan in place? That will help us guide you through what’s to come. 

    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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  • Hi Clockhouse. Another welcome from me. Best advise keep off DR Google tell your friends to do the same. Stick with us on here we’ve been there done it got the t shirt. As Dani says let us know a bit more ie how far along the process are you ? Have you met your oncologist etc.
    Don’t be scared I was / am a wimp but I did it and now over 3 years post radiotherapy for tonsil cancer with several affected lymph nodes. Happily living my life.
    Hazel  

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hello No treatment plan yet! I need to have ct scans 1st - unfortunately I have to waitSee no evil

    My consultants think I maybe stage 1 from the biopsy but unsure until scan are doneSee no evil xx

  • Hi. Hope you don’t have to wait too long. I presume if the cancer is on the side of your tongue then surgery will be the first option. I have a neighbour who had something remarkably similar and she simply had the cancer removed and no reconstruction was needed. 
    I have a friend who had more extensive resection and she is doing well, in remission and eating well. I’ll tag her to talk to you once you know what’s happening. 
    Meanwhile there is a really useful social media group you might like to look at.  Forum rules don’t allow me to post it here. I’ve sent you a link via direct message 

    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

    Community Champion badge
  • Than You so much Dani - that has given some kind of hope x

  • You need hope. It keeps us sane. Hazels advice to stay off Google is sound. Keep away.
    Oral cancer caught early is remarkably treatable. Hold onto that.
    Best of luck. Keep in touch and let us know how you get on 

    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

    Community Champion badge
  • Hi Dani I definitely will do.

  • Hi and welcome from me.  They eventually found my tumour in a similar place to yours.  I was to have surgery to remove it - the consultant said I was likely to have a 5cm square of tongue removed and would not need any reconstruction and probably no radio or chemo afterwards.  In the end when they went in for it it ha disappeared of its own accord.  Strange things happen! 

    It is not a walk in the park but it is doable.  We're here for you.

    Peter
  • OMG now that was someone looking over you Blush So basically they didn’t chop anything out of your tongue? Blimey what hospital was you under? X

  • Salisbury and Southampton.  I've had 5 operations looking and dealing with the tumour.  2 neck dissections with all of the lymph nodes RHS removed.  Both tonsils gone and numerous goes at my tongue.  It is the second time it has gone without trace, but at least on the second occasion they did actually find the tumour in the biopsy.  Otherwise I may have thought it just a bad dream!

    All through and post it has been fantastic care by the NHS, before and during Covid.  I am just over 2 years since they found a secondary in a lymph node that started this all off... 

    Peter