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Hi there, I've recently been told from the results of a biopsy that I have a secondary, had PETct scan this week so still waiting results of that! 

It's the waiting, wondering & uncertainty that is getting to me....... I'm not alone on this unknown journey I'm sure!  Hearing others in similar situations might help please? Wilted roseWilted roseWilted rosethanks in advance.

  • Hi,

    After numerous scans and tests etc I was  found to have secondries but the primary can’t be found (CUP) Liike you the wondering and uncertainty of this rare cancer is agonising. I am starting treatment in the next few weeks by injection and tablets but as I live on my own I am so worried about the side affects. I just wish they could find the primary as I am worried it will keep spreading. They think it’s slow growing. This came completely bout of the blue as the only symptom I had was loss of appetite. You are not alone with your thoughts and anxiety as I know exactly how you feel. Please message anytime. 

  • Hi can I ask did you have a PET scan ? I did and they cannot find my primary either , it is really worrying isn’t it , they think my primary started in my lung because of where my cancer is but there is nothing seen in the lung , I asked my oncologist where can it be , she said sometimes our own bodies kill it so that’s what Iam hoping for X

  • Hi,I’ve had a colonoscopy,gastroscopy,CT scan,Pet scan,2 MRI scans and biopsy! They still can’t find the primary. My consultant said it could be too small to see  it it could be hidden. I like your idea of it dying though.I just can’t settle down to any kind of normal life it’s just constantly on my mind. I don’t think as much research is done in this type of cancer as apparently it only affects 3 to 5% of people. Where did they find your secondry? Hope you get your results soon I agree the waiting is horrendous. 

  • Thank you for sharing your story with me!  It is the fear of the unknown that's worse than knowing I think.

    I'm still waiting for pet scan results to see if the primary was found. Also an appt for dermatology to check out a couple of moles. My secondary was found thro a lump that showed up on a CT scan I was having for a check on a post ops progress . 

    I suppose that was lucky in a way as I wasnt even aware of it. No symptoms at all.

  • Yes I also have had a pet scan and now waiting for result to see if a primary has been found.

    My secondary is in my lymph nodes in my groin. It's very frustrating waiting.

  • Hi thanks for reply , it is awful I went into a deep depression after the diagnoses feel a bit better now with antidepressants I had to go in them , yes it would be great if my body has killed the primary ! It can’t be found anyway so Iam hanging onto that , mine is in my clavical area it caused me severe pain around shoulder area for two years , was told it was wear and tear from orthopaedic until it started swelling then went to GP , where is yours ? I know I can’t settle either it changes everything doesn’t it ? Yes it’s very rare apparently, I had radiotherapy and then a scan and they can’t tell if it’s still there or if it’s scar tissue they can see , scar tissue from the radiotherapy, are you having treatment ? 


  • Hope your results are good news , mine was in the clavical area oncologist presumes it came from the lung but there is nothing showing on the scans Shrug
    such a worrying time for you hope you get good results xx♀️

  • Thank you for your kind words. I'm completely in the dark as to where my primary is. Living on your own gives you way too much time to think!

    I keep thinking trust me to be awkward & have a "different"type of cancer! 

    It's also quite difficult to have to explain to loved ones etc.  I don't feel quite so alone knowing there are a lot of others with this type!


  • Hi Margaret,

    Like you I went into depression and am on anti depressants. Some days feel like what is the point but I know that’s not good. The only symptom I had was loss of appetite and not wanting to eat. Dr put it down to depression as my husband died suddenly in his sleep 18 months ago. Dr did bloods and tests and in June everything was fine. Went back to Dr end July as still struggling with appetite and slight nausea and she repeated tests and that’s when it threw up red flags. Have had so many scans etc. I believe it to be that the secondrys are in the small bowel and gall bladder but it’s all a bit inconclusive.I’m waiting to start treatment in the next few weeks.The consultant said it’s very slow growing but foolishly I googled CUP and it sent me into a state of panic. The consultant also wants me to have a radio active scan as they are obviously still trying to find the primary.Other  than the loss of appetite I have no other real symptoms. Obviously the least little twinge makes me worry it’s gone somewhere else! Like you I’m hanging on to the fact the primary may have died. 
    Take care I know how you feel 


    • Like you I keep thinking trust me to have this kind of cancer. The consultant said I’m a bit of a mystery. I agree it’s difficult to explain to others as they have not heard of it before and can’t understand why they can’t find it! Yes it’s reassuring to have forums like this where you can communicate wuth people going through the same thing.Cherry blossomCherry blossom