Might be wrong place but..

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long story short

following enlarged superclavicular lymph node I had a petscan followed by total removal of the node.  ( I live in Spain, I’m English)

diagnosed as having squamous cell secondaries in neck and thoracic area,  but they are NOT the primary source that’s unknot at the moment. The PET scan showed nothing else. However I understand the markers? Showed either head and neck or gynaecology, so I am having further investigations next week followed by an oncology meeting for treatment.

They have mentioned radiotherapy and chemotherapy but I suppose that’ll be discussed next week.

not sure what I’m saying really... I’m in shock, I thought it would be Hodgkin’s lymphoma and now I don’t know what it is.  

  • Hi Zarasmum. A very warm welcome to our wonderful little community but sorry in a way that you have found us. The days you wait for a diagnosis are difficult I know. Do you have family with you to share the burden and keep you occupied? It’s pointless saying try not to worry because you will but trust your team because they are good at what they do

    Markers? If they point to HN or gynae do you mean HPV? 

    P16 is the usual surrogate. 
    HPV cancers in the head and neck respond very well to treatment but I’m sure your oncologist has told you. 
    Cancers where they don’t find the primary do occur and there are a few people here who are in that situation. 
    Nevertheless biopsies of the oropharynx do  often find it 

    I hope you get answers soon

    i had a squamous cell carcinoma at the back of my tongue which was P16 positive and I had six weeks of radiotherapy. It’s a difficult treatment but manageable and 22 months down the line I am living well with only a few side effects. 
    Do let us know how you get on. We are a friendly bunch and there is always somebody around to help. 

    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

    Community Champion badge
  • Hi

    thanks for replying. TBH I don’t understand the markers , I just have a series of markers on paperwork one is P16 they’ve said they think primary is either  head and neck or gynaecology , unsure what HPV is but obviously I’m listening in Spanish and translating into English. Next week I have an English speaking Dr to explain the diagnosis and treatment. I’m ok for a few hours and then I have a complete anxiety attack. I think I’m in the Dr Google phase... it’s not a good place. I’m glad to hear you are doing well. They did say on Monday that the two SCC I have in my neck etc should respond well to radiotherapy.  

  • Hi please leave google alone. It’s full of out of date and inaccurate information and is useful only if you know exactly how to interpret official current research. 
    Statistics are misleading too as they are by nature retrospective and out of date. 
    If your cancer is P16 positive it is almost certainly caused by Human Papilloma Virus abd it responds well. 

    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

    Community Champion badge
  • Thank you. There are several others markers present but I just get confused, I’ll focus on that positive until I know anything definitive xxxx

  • I’ve sent you a friend request. You can PM me with details and I might be able to explain a little. 

    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

    Community Champion badge
  • Just reply to my message. 

    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

    Community Champion badge
  • Hi Zarasmum. Welcome to the club no one wants to join ,As Daninsays the waiting is the worst part , where in Spain are you ? I have fellow cancer sufferers who were treated very well in Alicante and Valencia .I am at the moment on the Mar menor.I too had an enlarged lymph node in my collarbone hollow turned out to be squamous cancer cells my primary  right tonsil h p v 16+ .If I or the others can help just ask .i too had 35 radiotherapy and 2 chemotherapy cisplatin sessions.

    Shock and fear will be what yiu are feeling right now, it’s perfectly normal.

    Keep in touch Hazel x

    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/