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
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
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
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007