Recent throat cancer diagnosis, P16 negative

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I’m really wanting to hear from someone else in a same or similar position to a family member of mine. They have recently been diagnosed with throat cancer after finding a lump in the neck. They have had tors for removal on tonsils and base of tongue. These tests came back that there was no cancer present and they cannot find the primary. The cancer is p16 negative, plan is neck dissection with radiotherapy as chemo isn’t an option as they aren’t fit enough. 
please help me, dr google isn’t very nice with the search results

  • Think I am on similar journey just slightly behind waiting for pathology after Tors

  • Hoping they find your primary. Tors was on the 22nd October and results on the 3rd November. Praying for you Heart

  • Sorry to hear about your relative's diagnosis.  My primary was eventually found, but I'm sure I've heard of some forum members with an unknown primary.  Hopefully someone in that situation will reply to you later on.  In the meanwhile stay well away from google.  My consultant used to say that the only websites I should look at were the NHS, and the ones run by cancer charities.  

  • Thx - Sounds like moving more quickly than me - tors 27th no date for follow up - rang up to chase to be told specialist secretary off sick ! Pushed person on phone but didn’t fill me with confidence so contacted the cancers nurses - good look to u 2 will be interested on comparing notes - pain finally easing ! I will admit eating a weetabix made me cry the other day. 

  • s 27th no date for follow up

    Path results are taking two to three weeks. If you haven’t heard by then I would try again 

    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 so much for your reply. I know it will probably be said a thousand times but speaking to people who understand, helps so much. 
    take care

    Heart

  • Bless you! Hopefully they come back with some results soon! The waiting is agonising. My dad can’t speak like he used to do. His tongue and mouth is still swollen and sore. He has only just found drinking a little easier. He can eat weetabix now but not smooth soup! It’s very strange. We have a date now for his neck dissection which should be on the 20th. Followed with 6/7 weeks of daily radiotherapy. He was told he isn’t well enough with his other health conditions to have chemo. Hoping surgery and radio do their thing. 
    Take care, I’m here if you want to talk or any help with anything - I can if I will

  • Hi

    Have a look at my profile as I was similar at the start of my 6 year journey.  To see my profile click on my name and follow the link.

    Peter
    See my profile for more details of my convoluted journey
  • I have just read your profile. Your cancer journey is inspirational - I hope that’s the right word. Well done you!! These messages of hope are somewhat relieving some of the worry. 
    Take care Heart