Squamous Cell Carcinoma of the Tonsil HPV+

Hi, I’m 45 years old and I was diagnosed with SCC (left tonsil primary) that has metastasised to a lymph node in my neck on 13/03/2019. I have had a double tonsillectomy which was successful in removing the primary. I have just started Chemo and have 35 fractions of radiotherapy to follow. I’m wondering if I can find others who have a similar diagnosis who are happy to discuss their treatment. 

  • HI Peter

    Good to read that you have completed treatment. The hiccups sounds like a crazy episode! 
    You are doing great by all accounts.  The mouth ulcers are a damn nuisance but should resolve fairly quickly.  It all takes time and, as you say, everyone has a different experience. 


    I will not bore you with my own story but I am finally, after about 6 months out of treatment, even daring to think I am over it all now. Hopefully my sense of taste will further improve but all, including saliva production, is pretty good now. I just have a weird little extra 'belly button' type PEG site scar as a souvenir of my trip to hell and back. :)

     There is, as Hazel emphasises, a BIG light at the end of what, for many, appears to be a very long, dark and arduous tunnel. 

    Glad to hear that you are well on the road to recovery.

     

    Paul

  • Thanks Paul , so good and reassuring to read that 6 months on you feel you are over it , that must be an awesome feeling after such a long journey , reading that post gives me great encouragement that there is indeed light at the end of the tunnel . 

    Thanks for the reply 

    Peter 

  • Hi there all, I was diagonsed with squeamous cell carcinoma on my left tonsil and in my lymph node in neck just before Christmas last year.  I have 6 weeks of chemotherapy and radiotherapy and finished treatment on 19th March 2019.  So much of what I am reading is ringing true with me and I feel lucky that although it was hard and I felt rubbish I am recovering very well. I had very sore mouth and thrush in my mouth and every time I tried to clean my teeth I was sick, I lost a stone and a half or so during the course of treatment as I was sick, tired and really did not feel like eating and when I did I struggled more and more to eat. I couldnt cope with fruit or anything acid so ended up eating chicken soup and mushroom soup mainly and porridge.  I didnt start using the feeding tube until about the last week of treatment and then as a top up as I was still getting a small amount of wet food down.  My taste buds are still not back to normal but I can eat most things now although bread is hard to get down and meat unless covered in sauce. I cant eat chocolate or crisps or anything dry and I cant manage fruit as it is so acidy its like sucking a lemon.  Saying all that, I am feeling well and my friends and family all say I am looking great.  I am just waiting for results of final scan as the tonsils are clear but there was a small residual pocket of cells left which they are not sure of.  If it has not shrunk then they will want to operate and remove it and the lymph nodes in my neck, I dont want an op but if it means it cant come back then I am up for it but very much in their hands and will go with whatever I am advised to do. It was a very hard treatment but I got through it and am well on the way so keep positive everybody and just take each day as it comes.  I used to go to bed and each night and think, I hope I feel better tomorrow, and eventually, I did. Keep going and I wish everybody going through this all the best.  A couple of tips, when my mouth was so bad, I bought childrens toothpaste which was not as strong as normal toothpaste and a child`s brush which was soft too.  I could not tolerate my electric toothbrush and was very sick when trying to clean my teeth.  Keep well hydrated even if it means putting it through the PEG, if you need to sleep, sleep, the body can be getting on with fighting this evil invader while you are doing it.  Keep going  guys, we can beat this!!