Unknown primary

Hello... My name is maria and i have just been diagnosed with secondary lymph node cancer... This was nearly 3 weeks ago.... I am waiting for a scan to see if they can find the primary. 

At the moment i dont know how i feel apart from the doctor who told me about my diagnosis which was over the phone due to covid.. I havent spoken to anyone it feels like iv been to my GP they have told  me i have cancer go home and get in with it Blush

It's a tad scary however im not slateing the NHS with all the problems they deal with they do an amazing job.. I think it would be nice if i spoke to someone face to face to explan whats going on with me.   I have this horrid sensitive pins and neddles feeling daily just would like to know if there is anything they can do for it. 

Think I'm going to have to stop i could go on for ever 


  • Hi Maria and welcome to the group.  This one tends to be relatively inactive as I think we get the majority of support from the groups directly related to our cancers.  I am sorry it has taken me a couple of days to see your message.  You don't say where they suspect the cancer is.

    I am really sorry to hear your experience of the hospital and your GP.  I don't recognise that approach from my own even though I was being treated right through the hight of Covid.   That said I do know some areas are really struggling.  I would advice you to be quite insistent  in requesting to see, or at least have a meaningful conversation, with your healthcare professionals.  Do you have a CNS (Cancer/clinical Nurse Specialist)?  They are often the best person to answer your day to day queries and concerns.

    At the moment you are in the diagnosis stage.  This is often the worst phase with waiting and unknown.  At the moment you are not with an Unknown Primary - they just need to complete the search.  You may end up CUP and that can be mentally quite difficult to get your head around.  Whatever happens your clinical teams will do their best to cure you.  The treatment may be slightly different not having a cancer "target" to go after, but it can be just as effective.

    I am 2 years in initially diagnosed like you with lymph nodes.  Eventually they found the primary after 15 months of treatment and watching.  Only to loose it again.  Cancers can be strange beasts, but the NHS is skilled at treating them.

    Feel free to ask any further questions you have.

  • Thank you so much for your reply. Thats has made me feel so much better.... Its just so scarey and yes cancers are strange and i think a tad nasty Joy

    Hopefully i will get my scan date soon so I can start getting my head round it all

    Thannk you agan and i hope your well 

  • Hi Maria,  Hope you are getting some help now. I have also recently been diagnosed with cancer to lymph nodes in neck with the primary unknown, have had CTs and Pet scans but no joy in finding the slippery little sucker. Start chemo end of the month, can’t wait lol. Could of started earlier but decided to take a holiday before. 
    Thought I would just say Hi, being special like you.

    Hope your ok


  • Wise move on the holiday.  I did just that - diagnosis and 2 days later a 3 1/2 week planned holiday to the USA!  Similar to you in the diagnosis but I went down a surgical route and have not had RT (yet).  That is saved for another return of the cancer.

  • Great, glad you done the same. All the best for it staying away Blush

  • Hi MIck

    I have just had my cat scan so hopefully i will fine out if my slippery primary has been found, and then hopefully find out if i can have treatment. I dont blame you for going on holiday, hope your feeling well ejoy your holiday



  • Thanks Maria, will do my best. Good luck

  • Update im finally on my way to consultant to see if they have found my slippery bugger xx

  • Hope you find out , fingers crossed Fingers crossed for you

  • Hi i hope im not bothering you..... They couldnt find the primary hiwever as mine hasn't grown or spread im good for treatnent Blushxx