Just saying hello

Hi to everyone.  I've just joined this group although I am quite active on the head and neck group (and I recognise a few of my fellow CUP from there)

I've been chasing a CUP for 18 months now.  Every time they think they have it, it magically disappears!  Frustrating... So I am not the king of CUP, but I feel pretty well up there Smiley.

Happy to contribute my experience and help others as I know this can be a very worrying place to be for some.

  • Hi PFJTHS, I know we’ve talked on the Head & Neck Group and yes it is quite worrying isn’t it despite the reassurances you get that “it” might have been so tiny it could have been absorbed or that your own body might have dealt with it. Then you yourself get told that they think they’ve found yours which then raises the issue “well if they think they’ve found PFJTHS’s then mine must still be hiding in there somewhere!”

    When they think they’ve found yours how how they finding it, i.e. scan, tests etc? Are they just looking for the CUP in the H&N area or elsewhere. I worry that I’ve been told that they no longer do scans as part of the monitoring but are relying on our bodies telling us when something isn’t quite right. I’d be more at ease having a scan every so often.

    On another subject regarding CUP is travel insurance. My cancer was in the left neck lymph node and successfully treated last August but now have 5 years monitoring ahead of me, yet the CUP will no doubt be the major factor in determining how much I have to pay for travel insurance even though they can’t find it, which leads me on to, when will we be declared cancer free, in 5 years after the monitoring or never if they still haven’t found the CUP? It’s a question I’ve got on my list for when I see my ENT consultant at the end of June unless you already know the answer to that. 

    Best wishes

    Carol x

  • Hi Carol

    They actually did find my "primary" cancer back in January.  Nasaloscopy and were not happy with a tiny raised area of my tongue.  Panendoscopy and biopsy.  Confirmed the cancer was the same as the secondary lymph node of 15 months prior.  6 weeks later I went in for TOLS (surgery) and when they opened up the tongue and did a frozen section it was nowhere to be seen...  Subsequent histology has not found anything in the material removed.  And that was just the same 15 months earlier...

    I am taking part in a study group this week re the reduction in F2F and scans.  Whilst I think it can work post treatment AND confirmed no sign of cancer( and would happily take that route) I don't think it would work in my case as when the tongue lump was detected I did not sense anything wrong with me...

    I am dreading looking for insurance when no having any curative treatment - although common sense would say that I am very low risk with what I've had done and the checks I currently have!

    AT a personal level I don't believe that I will ever be cancer free.  I/we may knock it into a corner, but I think I always need to be conscious of it returning; even after they say I am free.  That does not mean that I am scared of it, just that I am always on a sensible look out for it's return. 

  • Hi Peter, thank you for your reply,  I would be interested to hear any feedback you might have when you attend the study group this week.

    Best wishes

    Carol x

  • Hi Peter.

    You kindly responded to my post on the Neck and Head group a couple of months ago. My dad has SCC P16+ unknown primary. I appreciated your support, it was soon after the diagnosis and I was certainly in shock. 

    Hope you're keeping well. Sounds like quite a journey you've been on. In terms of finding the cancer and then it disappearing. In some ways I found it reassuring that they didn't find dad's primary, as it can't be too big or too aggressive if it can't be found?? It's such a complex area, I feel its a new language and complex area to try and understand, whilst also managing the emotional repercussions of living with cancer /caring for someone with cancer. 

    My dad is now having radiotherapy, presumably because the secondary cancer is in approx 15 of the lymphnodes in his neck. 

    It's gruelling. But we're taking each day at a time.

    It's interesting how different people's treatments are.

    Wish you well. 

  • Hi to you all. I was ill all last year, lost 10 kg, and was very sick. At the last resort my specialist Doctor decided to send me for a CT scan. After the scan a large lump appeared under my arm. During a visit back to the clinic two days later I received a phone call from the Doctor saying that I had a tumour on me lung! As you can imagine after over 50 years of not smoking I was totally amazed. After checking in to a specialist lung cancer clinic, they did two biopsies' of the growth, it took two weeks to get the results back. This lead to starting Chemo for lung cancel two days before Christmas 20. I was very ill, and checked into my local hospital, I stayed for a week. During my stay I had another scan and was told that although I had a very small tumour on the lung that my cancer is CUP. One Dr kindly told me that I should get my stuff in order as my life expectancy was max 12 months. Since then I have a new oncologist who did the CUP diagnosis, and 6 further chemo's. The mid term CT scan was very good, only one peritoneal tumour left and it was half its original size, he recons he can do better than 12 months! My chemo is done, next week a further CT scan, and the week after next the diagnosis, and hopefully all clear, very anxious and the waiting is not easy.

    Thanks to McMillan for their support. Oh by BTW I forgot to Mention that I am a British guy living in Germany. 

    However I must say that all the nurses and support people have been really kind and great, Sorry its got so long but very therapeutic getting it all down. Al the best for you all


  • Hi, since my last post I had the scan with the result that the cancer is in remission or dormant which is good news. I have another scan in 3 months. Meanwhile I am trying to get rid of the effects of the chemo, numbness and pins and needles in the feet, rather uncomfortable, cant go for very long walks. Any ideas anyone?

  • I'm five months post chemotherapy and I'm still recovering.  The foot pains took over three months but I still get bad stabbing pains in my ankle. Fatigue is the worst thing, I'm definitely not doing anything near what I did pretreatment.  Glad your scans going in the right way