Rare Tongue Cancer

Hi just got the news, I have a very rare tumour at the very back of my tongue that's not operable due to its location. I'm waiting on MRI and PET Scan appointments. Radiotherapy and maybe chemotherapy has been mentioned. Has anyone this rare tongue cancer......

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  • Hi Mary sorry you've found yourself on here. I had a rare tonsillar cancer h p v positive (16) with several affected lymph nodes. I wasn't operated in as one of lymph nodes was too close to spinal cord. I had 35 radiotherapy snd 2 chemo sessions. I am now 3 years post radiotherapy and living my life. I was one if the 3% female with what is typically a male cancer. Don't stress radiotherapy snd chemo is hard but I was 61 and I did if. I have  a blog  which shows what I did. www.radioactiveraz.Wordpress.com

    Keep off dr google please that will scare you more 

  • Hi, thank you for your reply. I have taken a look at your blog.  It was a very interesting read. Thank you for sharing.  The Radiotherapy looked very severe, well done to you for getting through it.  Is there any moisturizer that I can be putting on to help to build up my skin?

     

  • Hi thank you for reading my blog. I used e 45 cream U.K. tk treatment starting then I only used what the team gave me. Very few burn as badly as I did Larry my big lymph node was very close tj surfsce so was always going to burn it's fine now I haven't had any issues any questions just ask will try to help you.  
    hazel 

  • Thank you Hazel.  How did u find wearing the mask for Radiotherapy....got fitted today,

  • Hi Mary. Quite early in in  diagnosis I took the decision that this wasn't going to best me. The mask was my defender I gave her a name snd every session told her I named her yep I did lol. Told her it was going to hurt her more than me and she was going to save my life which it did. I was fine I composed myself walked in with head head high and concentrated in my breathing and took my head in a bike ride or a walk I took my own music in. Before it started at home I used to our in bed visualise my walk set the timer for 12 mins and I never got to end of walk or bike ride. 12  mins most days nsybe 15 if scsn was being done. You can do it I did it. 
    hazel 

Reply
  • Hi Mary. Quite early in in  diagnosis I took the decision that this wasn't going to best me. The mask was my defender I gave her a name snd every session told her I named her yep I did lol. Told her it was going to hurt her more than me and she was going to save my life which it did. I was fine I composed myself walked in with head head high and concentrated in my breathing and took my head in a bike ride or a walk I took my own music in. Before it started at home I used to our in bed visualise my walk set the timer for 12 mins and I never got to end of walk or bike ride. 12  mins most days nsybe 15 if scsn was being done. You can do it I did it. 
    hazel 

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