Hello, I'm new here.

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Hello! I have recently had both tonsils removed and one was confirmed as cancerous. I have been told that two of the glands in my neck (lymph glands I think) are also affected. I have a choice of treatments to make. Either surgery in the first instance as part of the Pathos clinical trial or radio and chemotherapy. I am finding the amount and type of information to be difficult to take in and this is not helping my decision making. How have others negotiated this decision making process? I keep flip flopping between the options!

  • Hi Jan and welcome. 
    I haven’t been in the trial but there are a few here who have. You could put pathos in the search at the top of the page to look at some posts. 
    I had cancer at the base of my tongue. Which wasn’t operable T2

    I had 30 days of radiotherapy which fixed me and I’m now 4+ years clear 

    Does your team have anybody in the trial you could talk to? 

    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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  • Thank you!

    I've found the thread. 

  • Hope it helps. I’ve answered you there as well. Good luck. 

    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

    Community Champion badge
  • Hi I had tonsil cancer with several affected lymph nodes wasnt a candidate for pathos as it’s a randomised trial and one if my lymph nodes was too close to spinal,cord. The side affects are hard i was  61 when diagnosed I’m almost 5 years now happily living my life. I had 35 radiotherapy sessions and 2 of a planned 3 chemo. Would I do it again knowing what I know yes I would.I’m  still me I’ve nit changed apart from dry mouth at night and a few issues with food but I’m here to tell the tale. All I can say is go with your gut 

    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 Jan. For what it’s worth, I chose the TORS option for my tonsil cancer and joined Pathos. After the surgery I was randomised into the chemoradiation group. It was tough going but I like to think that it was worth it. Basically I was happy to take everything they offered me and the more people who needed to see me the better.  I’ve since been part of a HPV16 vaccine trial too, designed to reduce the risk of any recurrence.  I appear to still be clear so far after nearly 3 years. Wishing you all the best. M