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!

Beesuit over 3 years ago

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

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

Jan W over 3 years ago in reply to Beesuit

Thank you!

I've found the thread.

Beesuit over 3 years ago in reply to Jan W

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

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

RadioactiveRaz over 3 years ago

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 35 radiotherapy and 2 chemo 3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life.
No questions too daft to ask.

I’m also an ambassador for https://oraclehnc.org.uk/

A leading head and neck cancer charity.

This is a link to a webinar i did with Oracle explaining the process of diagnosis.

https://oraclehnc.org.uk/oracle-launches-new-webinar-series-to-support-head-neck-cancer-patients

MarkEL over 3 years ago

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

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