Newly Diagnosed 55 year old T4a Tonsil 3lymoh nodes

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Hi All 

My name is Debbie I was diagnosed nearly 4 weeks ago with T3 right tonsil 2N now been upgraded to T4a3N +16we just celebrated my sons18th last week plus older son 26 and gorgeous grandaughter..

Saw oncologist at Sheffield yesterday (Scary scan pictures)and dont know which way is up today ……. feels like hell aready and I havent even started Radio/chemo !! Delay now is waiting for dental apt then need MRI CT Petscan and mask fitting( sadly all reminds me of my dad who had GBM4 in brain died after 7mths).

Is anyone out there who has survived same cancer and any support would be greatly appreciated x

  • Forgot to say Dyslexic please expect creative spellingsJoy

  • HuvDrbbie you’ve found the right place. I’ve emailed you but please keep on here as well. 
    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/

  • Hello Debbie

    The waiting is the worst. The main thing to hang on to is that this type of cancer is very treatable. I had a T4 N2 in base of tongue, completed treatment  9 months ago, it was tough but & I'm fine now.  Do you know if yours is HPV associated?  They are very responsive to treatment. 

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story

  • Hi Debbie,

    Im really sorry to hear about your diagnosis.

    my husband (53) was diagnosed on 15th August with N2C unknown primary squamous cell carcinoma P16 positive. (TXN2C MXSCC).

    I don’t have any advice on the cancer itself - but I certainly understand your anguish at having the world as you know it turned upside down.  

    we are trying our best at taking one day at a time. We’re not worrying about the what ifs. We’re focusing on what we have to do each day, as we work towards the milestones. Our milestones this week are. 1…. Telling our Grandkids (13 & 7) that Grandad will be going into hospital. 2…… The tongue based mucosectomy & tonsillectomy & examination under anaesthetic surgery on Monday 11th September.

    One thing I can add…. We’re based in Oldham & have been seen at Oldham Royal, North Manchester, Fairfield Bury & Wigan Infirmary. It will be 9 weeks from finding the neck lump to having surgery. We already know his Chemo/RT will be at Christie’s Manchester.  So far the whole process has been dealt with really quickly.

    so my advice as hard as it is…. One day at a time.

    it just becomes overwhelming otherwise. Sending big hugs to you & your family Hugging

    Dave & Ange x

  • Thank you best of luck for the 11th I will be thinking of you both xx

  • Yes Oncologist said yesterday its HOV positive viral cancer Thank you for reaching out its much appreciated x

  • Yes HPV positive T4a N3 MO ( 7 weeks ago) saw scan yesterday its in throat base of tongue Tonsil and all down beck Bloody scary stuff x

  • Many thanks Hazel I found your blog and it gave me a glimmer of hope with you and Dani plus the lovely people on this site I hope to comw out of the other end being able to ring the bell one day xxx

  • Hello. I had bilateral tonsillectomy, PEG, then 6 weeks of chemoradiation (6xchemo & 30xradio) for tonsil & lymph node hpv 16+
    I am now 17 months post treatment & NED ( no evidence of disease) Please feel free to direct message me or ask anything on here