Hello

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Hello,

I am 56 and have recently been diagnosed with cancer unknown primary (CUP) after having a very fast growing lump on my neck removed last month.  As Its CUP, it means that my cancer is advanced,  already also in my lungs and lymph nodes in the groin.  They describe my cancer as ‘aggressive’.

I have finished the first round of chemo and start again a week today.   I am dreading it/ can't wait to get on with it in equal measure.  They won't give me any idea on my prognosis until after a scan following my third chemo session so I'm in limbo.  

Having CUP is also quite isolating as I don't 'belong to a cancer group'.  Its vey difficult to get any information about head and neck CUP so I'm feeling quite alone.

I'm also scared by the term ‘aggressive’. I’m in the unusual situation of being able to see my cancer(!). My neck tumour wasn’t completely removed as it had stuck itself to my carotid artery, so they decided to stitch what remained of the tumour to the surrounding skin and I have an open wound exposing the cancer. During my first (and only, so far), my husband (who does the dressings) said that it had shrunk and the fluid that it produces virtually stopped during chemo but it’s now merrily making fluid again and feels like it’s growing (I can also smell the cancer fluid - it’s very distinctive).  

Does anyone else have experience of aggressive cancer and any stories of hope?

thanks!

  • I don't have any relevant experience to share, but I wanted to say "hello" and welcome to our little group.  We are a friendly bunch and you'll find lots of support here.  Have you found the "Unknown Primary Cancer" group yet? CUP is a toughie, sending a hug your way.  

  • Hi 

    Sorry you have had to find us, but you are most welcome.

    Like Mmum i do not have any experience of CUP, though like Mmum said there is a group here as well for that, i belong to four groups, that  i have joined, and get help from every one of them.

    Always some one here, that will listen, advise if they can, and we all hold everyone one up when they start to crumble, and i can assure you we have all been there, me included, this  is what  we call a special group.

    You can moan, rant, scream,,  laugh and cry, but you are not alone,. I am pleased, you found the strength to make the move and join, Your most welcome,

  • Hi , I don't have any experience of your cancer, I have an incurable bone marrow cancer which was diagnosed 7½ years ago and I'm still here. I must say RHS that there's always hope. Don't lose hope. Never. 

    Keep us updated please RHS and I look forward to following your journey.

    Tvman x

    Love life and family.
  • Thank you , for your warm welcome. I think that I’ll be on here a lot!  

    I have also joined the CUP forum and that has made me realise that there are different ‘grades’ of CUP and not everyone is deemed ‘incurable’ as far as I can work out. My cancer appears to have spread so quickly and I’m doubtful that chemo can get rid of aggressive tumours given that they have a chance to grow back between sessions

    i spent yesterday at the hospital as I feel so weak and breathless. They did a CT scan to rule out a possible PE which they discovered post my op. Luckily, that’s gone, but the only suggestions that the doctor could make was an infection somewhere (I have slightly raised levels of something ) or just the cancer growing. IT’s been nearly three weeks since my first chemo (due to start again next Friday). It’s not a good sign if the cancer is taking me over so soon after the chemo finishes. I will get a scan after my third chemo session so everything until then is just guessing but im not hopeful that it’s going to keep it at bay for any length of time.

    Apologies for being so down - it all just looks so hopeless at the moment.

  • Apologies are never needed on this group, you say it how it is, to get it out in the open makes it a sort of relief.

    I really do not have all the answers i wish i did, but always here for a rant. You have been dealt a rotten deal as such, but it is not over, hang in there, though hard i know, easier said than done at times, i put a mask on when needed as it is my cover up and to hide how i  am feeling, we all have our own ways of dealing with things, some days better than others.

    The doctors will done their up most best i am sure, and so will you,  tomorrow will be a better day, thats how my days turn out, every day is different never know from one to another.

    xx

  • Hello RHS and welcome to the forum. So sorry to see what you're going through. I hope you get all the support you need here. There is a head and neck group and someone on there is also CUP and I'm sure he would be happy to share his experiences with you. His username is PFJTHS

    It's such a lot to take on board but slowly you'll come to terms with it. 

    Wishing you all the best x

  • Hello and welcome to our group you will get loads of support on here when ever you need us we support everyone on here day or night and don't apologise for feeling down you will have good days and bad just take each day as it comes thinking too far down the line gets you even more stressed out sending huge hugs and support xxx

    Flippen
  • Hi RHS like many of our group members I have no knowledge of CUP, I have incurable advanced agressive prostate cancer Gleason 5+4 is spread to lymphs and bone's, incurable but treatable, I see you are also treatable, good news.

    As to being down you would no be human if you weren't, please feel free to express your feelings, talking is good, also if you tap the icon by our names you can read our profiles they might help.