CUP diagnosis

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Started having pain 6 years ago on and off in lower right side stomach. Had so many scans over the years and consultants saying I'm a puzzle to them and saying different things. 2 years ago had hernia repair which I was told for few years no hernia till I saw a surgeon out of area and he said yes do have hernia so he repaired.  Pain in right side stomach still there.  Fast forward to this year. Had scan in February as pain still really bad in right side stomach, scan showed something so was sent for PET scan. Then went in for laparascopy to take a look, took a small nodule out to biopsy and there you have it, Mr cancer, but it was secondry and no idea where primary is.  The nodule showed up on scan 3 years ago so not sure why it wasn't looked at then but hey ho.

Have had another PET scan and scan on breasts but nothing is showing up anywhere,I'm being told once again I'm a puzzle and an unusual case whatever that means. I don't feel ill at all, am I supposed to I don't know.  I have had one appt with a doctor in oncology , I can either watch and wait and have PET scan every 3 months to see if and when primary shows itself or I can have mop up chemotherapy, bearing in mind I feel well at mo.  Just don't know what to do and having trouble getting my head round it all.

Thank you for reading 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi I'm in the same.position I'm a cup,I did have what was thought to be ovarian cancer which then turned out to be a secondary an despite every test possible no primary has been found I feel on limbo at the moment so happy to stay in touch us rare breeds lol x

  • Sorry to hear you have this too

    Told yesterday that pet scan has showed more cancer appeared on left side stomach and liver. Still can't find primary 

    Now starting chemo on 8th October

    Really scared as was coping really well but now it's got too real if that makes sense. I wasn't expecting it to be more so quickly. In my head I told myself I might be ok for few years and scans come back saying no more appeared yet.

    We are rare breeds. We are special x

    Would be nice to stay in touch.

    Thank you for getting in touch

  • Hi lovely 

    I totally get what uve said...I had the meeting this morning with cup dr an he told me there is shadowing in the peritoneum which is cancer.i assumed my petscan was clear an all my.other scans so it was upsetting an then they label us stage 4 cos it's spread do my head is exploding at the moment an now I know I defo will be having chemo I am.terrified.like you I had dealt with it all really well an now I feel scared an just don't know what's gunna happen.lets stay in touch defo we can cry together an support each other.xxx

  • Mine is also in peritonium. The one bit was removed on right side but now it's on left and in liver.

    Have they said when they are starting your chemo 

    Xx

  • When I had my radical hysterectomy an tumour surgery in June they said there was one cell removed from the peritoneum that was cancer but it's never been mentioned since an now apparantly it's there.....they said treatment will start in next 3 weeks so we will go through it at same.time.were abouts in country are you?x

  • We can be chemo buddies.

    I'm in gloucestershire where are you x

  • I have friend requested you x

  • Morning how do you feel today?I've woken up with this big black cloud over me....the thought of chemo just terrifies me......I live in Hertfordshire and my name is nikki,I'm 51 have 2 grown up boys an a partner that has been totally useless throughout the whole.of this journey!he would rather work an do his own stuff than support me ........so do I do chemo on my own..cos ive done everything else upto now on my own lol x