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!

  • It’s exactly that! It’s my husband’s birthday today. Definitely not great to think about whether I’ll be here for his next one

  • Hi ,

    thank you for giving me that encouragement! Everyone  has such different experiences so I know that I’m probably asking almost unanswerable questions. I read your profile and you’ve been on quite a journey! It’s really good to see your challenges and the timelines. It’s definitely cheered me up on what’s been quite a dark day! 

  • Your welcome, I'm pleased my profile helped 

  • Hi, welcome to our group, i can't help with your particular situation, I hope that the CUP group you have found us helpful. Do remember that chemotherapy is a nasty aggressive treatment I certainly found my treatment gruelling. I hope that your scan shows that it has helped 

    Sarah 

  • Hi ,

    thank you for the welcome.  It’s good to know that support is out there!

  • Hi RHS,

    Sorry to hear of your current situation. It must be hard being able to see and smell the cancer. I have an aggressive cancer, please click on my username to read my profile. My situation started as what they thought was not very serious, which then quickly progressed to aggressive and incurable.

    I have had radiotherapy to bone mets and chemotherapy, my last session was last month. The halfway CT was positive, I could tell from my body as I wasn't in pain, could walk and the fluid had stopped. The end of treatment CT showed that there was no active cancer seen ( it doesn't mean it's not there said oncologist). I am currently well and have suspicious niggles of pain like I had but am hoping it's the exercise I'm doing, I like to walk.

    I was told by my Macmillan nurse that aggressive cells respond well to chemo due to their biology ( it's easier for the chemo to get in and kill them). I sincerely hope that's the case for yourself. I hope your chemo works and lessens your symptoms.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • thank you so much for your reply.  Your bio and post have been really useful.  It does sound like you have on a journey of doom - at least I had my bad news upfront,  which I think that I'd prefer.  

    I had heard that aggressive cancer responds well to chemo,  but I couldn't remember where,  so didn't attach much importance to it.  It does give me a ray of hope.

    I presume that I must be on palliative chemo as well.  I understand that this is because we can't be 'cured',  but is it just the objective that is different for curative chemo or are the drugs different as well?  

  • I'm sorry you have had to join our group but please know you are able to say anything to the lovely people here and while there might not be anyone with the exact diagnosis you have somebody will share the same feelings or symptoms following chemo etc that you are having. It's very hard to shock anybody here so feel free to say things you might not feel able to share with friends and family. You might also find there's a sense of humour here you might not find elsewhere. Take care

  • Hi RHS,

    I think it's just the outcome that is referred to. I have been told that I had the gold standard chemo for my type of cancer at a standard dose. 

    Pleased I've eased your mind a little bit. I'm under no illusions, I know it will come back but hopefully I'll be able to have chemo again. I've been told that it becomes less effective over time and that chemo is the only form of treatment that will work for my cancer.

    Good luck with your treatment, it's hard but if it works it's worth it.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Hi and thank you for the welcome! From what I’ve seen so far, the sense of humour here is very aligned to mine!! I suppose that it goes with the territory……