Diagnosed

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What happens next and what do I expect?? Was diagnosed with HPV+ tonsil cancer but spread to lymph nodes in neck. Had a ct scan Saturday and waiting on mdt 28th but freaking out incase it’s spread elsewhere. Is this likely?? 

  • Hi  

    Welcome but sorry to see you here 

    Is this likely?? 

    In a word No

    HPV cancer tends to stop at the lymph nodes. Distant metastasis is rare

    Thus cancer responds extremely well to radiotherapy with cure rates in excess of 90%
    Hang on in there. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • What happens next and what do I expect

    I presume you’ve had a biopsy? And an MRI?

    The first diagnoses the type of cancer and the second the extent. 
    After your MDT meet you’ll likely have an appointment to discuss your treatment plan. The usual treatment is six weeks of radiotherapy plus chemotherapy. You need to be in the same position under RT every time so you have a mask made to cover your face and shoulders which keeps you in position. 
    There’s some info on this on my blog linked below and here www.leedsth.nhs.uk/.../

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi As Dani says  No. I had spread to 7 lymph nodes but that wasn’t distant spread the cancer as held by the lymph nodes as they did their jobs. 
    Remember HPV driven tumours respond extremely well to treatment. I can’t lie treatment is brutal but I was 61 when diagnosed now approaching 5.5 years post treatment happily living my life. 
    Any questions just ask 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Bigmonk,

    So sorry to hear about your recent diagnosis.

    I was exactly where you are last September, after CT/Biopsies and MRI I was told I had a T4a( size of cancer 1-4 )cancer in right tonsil that had spread to at least 3lymph nodes on same side I had to then have a PET scan which showed the lymphs( like Dani & Hazel said had held onto the cancer so it couldn't spread .My Oncologist said its very rare for it to spread elsewhere.

    From there things moved quickly 1:1 with oncologist who explained my treatment plan (all of which can differ from person to person ) 7 weeks of Radiotherapy with3 overnight Cisplatin chemos of which I had 2.The fear and anxiety( all normal ) hopefully will lessen once treatments starts.

    13 weeks on and Im in recovery thankful for every fabulous day  

    So Enjoy your time before you start treatment .. do the things that bring you joy/comfort eat all of your favourite foods and keep yourself busy.

    Never a daft question on this site, such a supportive group.

    Debbie