Brother with Unknown Primary

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Hi everyone. I am new to this site and just beginning to navigate my way around. 

So my big brother Chris (49) has been diagnosed with secondary brain tumours caused by a cancer unknown. He is due for his CT and MRI tomorrow, the CT will cover the chest, abdomen and pelvis and will hopefully show the primary source but as of now we dont know what that is so its a massive worry. 

Chris suffered in 2010 of cancer of the carotid artery which was removed and after he had some radiotherapy treatment to kill any left over cancer cells but has since been ok from that until recently. 

We also lost our mum in 2018 from a short battle (6 and half months) with Non-Hodgkin's Lymphoma so anything thats new medical wise my brother holds off on mentioning or getting checked because he is terrified. Which is understandable, although we are different in that respect as if I felt something had changed or wrong I would go to be checked straight away given our family history (my Gran also had Ovarian Cancer, she passed of a stroke in 1989) but my mum and brother are the ones who would rather not know. 

It the waiting that I don't like and I feel we could be waiting over Christmas for the results of the CT and MRI, but if anyone has been through or knows someone that is going through or been through the same or similar, can maybe shed some light on how long they waited for results or is things were sped through being an unknown cancer? 

  • Hello

    I know exactly how you feel. I’m in my 70s and have also cancer of unknown primary. I have had so many scans mri biopsy’s in the past 10 weeks and they still can’t find the primary. There is a secondary and tomorrow I’m sitting down with my consultant to see what the next move is. The waiting is horrendous and the not knowing is torture. I’ve been told they think it’s slow growing can’t be cured but probably manageable. My mind is just all over the place and I just want to know what’s going on. My main symptom is loss of appetite. I had another scan yesterday as I think they are still trying to locate the primary.All together I’ve been waiting over 10 weeks with no clear diagnosis. 
    I feel I’m in the middle of a nightmare as I had never heard of CUP (cancer of unknown primary) Sorry I can’t be more help 


  • Hi 

    Iam the same I have a secondary in my clavical area which have had radiotherapy for but they cannot find the primary , they think it is lung originating but my scans including pet scan doesn’t show any thing up 

    I asked my oncologist where could it be she said sometimes the body just kills it ! I do hope that’s the case but it’s always on my mind but what can we do ? 
    Apparently the secondary has an area it would have came from ie: mine would have came from lung , is there any idea where yours might have came from ? Did you mention where your secondary is ? 
    they also said mine is slow growing but Iam hoping the radiotherapy has shrank it or ideally made it disappear but Iam not getting complacent 

    hope you get some answers too it’s difficult isn’t it x

  • Hello 

    Like you the consultant believes mine is slow growing. After seeing him tomorrow I’m hoping some kind of treatment will be started probably now after Christmas. 
    There are some areas of concern in gall bladder area but inconclusive I just wish they could find the primary as I’m worried it’s going to keep spreading. When I asked where it could be they said it could be tiny, or hidden or died and dissolved which I’m hoping is the case.Hopefully I will get some more answers tomorrow. It is such a worrying time for us both but don’t feel quite as alone with it now. 

  • Hi 

    no you are not alone at all , have you had a P.E.T scan ? I had one and there are no more “ hot spots” showing up so I am like you just worry about where it is and hope it has dissolved on its own , The PET scan is apparently the best for picking Cancer up I have had all other scans too and a biopsy in the clavical area where the primary was found , I had been going to orthopaedic for nearly two years with pain in that area and around the shoulder but was told it was wear and tear , until this April a swelling appeared there and that’s when I was sent for the biopsy 

    the two year I was in pain Iam taking some comfort from that as mad as that sounds but Iam thinking how long has it been there and if it’s a long time that is good 

  • Hi 

    sorry I think I have been making reply’s but not directly to your post 

    my reply’s are below if you want to read them 

    keeo string X

  • Hi,

    Yes I’ve had a PET scan 2 MRI scans colonoscopy gastroscopy 2,CT scans and biopsy. I just wish they had found the primary. Appetite and nausea has been the worst. The consultant put me on one steroid tablet a day and a quarter of a tablet for  nausea which has helped. I’m getting a bit of discomfort in upper stomach  and in my mind I’m immediately thinking it’s spread. It’s the mental aspect which I find hard. Waking up at 2  in the morning and going over it in my mind. I try not to think of the worse scenario but it’s hard. 
    I am getting your reply’s Thankyou. I havent heard of anyone else  where the primary can’t be found. 

  • Hi I think it’s very rare that’s why there doesn’t seem to be much information on it 

    yes agree it does effect me mentally also 

    been an awful year 


  • Hi I was wondering how things are for you now and if the primary source has been found ? I am waiting to get my next scan in May to determine the outcome from the radiotherapy, hope to hear back from you X

  • Hi still haven’t found primary although in latest letter from consultant a possible involving pancreas was mentioned. I don’t know how they can tell that without another scan. So confusing and worrying! 
    Had my first chemo  2 weeks ago. I had a Picc line inserted fir the duration of the treatments. Chemo went ok but walking out afterwards I became very breathless and my daughter in law rushed me back. Apparently a reaction to the cold air and panic!! I have to have it every 3 weeks with a weeks break and have been taking chemo tablets at home twice a day for 2 weeks and a weeks break.Have been so worried about side affects as  I live alone.Have felt pretty ropey but can just about handle it! I’m off the chemo tablets at home now for a week so hoping I will feel a bit better. Still no appetite  at all and can’t taste anything.I am sure like me you are going through all the same emotions. It’s horrid and the uncertainty of it is like torture! May seems to be a long wait for your scan. Not sure what part of the country you are in but could they not bring it forward. Please keep in touch there does not seem to be many on the forum with CUP x

  • Hi nice to hear back from you , would a scan not have already picked it up if it was pancreatic? Sorry if you have already told me where your primary is but I can’t recall ? Mine is in the supraventiculer area and they say that’s a secondary, I don’t think they want to scan to soon after the radiotherapy, I did have one but they cannot tell if what they see is the tumour or if it’s scar tissue from the radiotherapy so I will have to wait for this next scan ! It’s all a waiting game and your right it’s torture X