Asymptomatic but incurable. Struggling to understand

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I was treated for neck cancer which cleared but at 13 week scan, some mets to lung. There is v little metastatic disease (small lymph node involvement) but I’m now on palliative Immuno only. I’m 45 and otherwise fit and healthy.  I’ve been careful NOT to get a life expectancy prognosis. I understand the reasoning but can’t get my head round the fact that there’s nothing that can be done for me. Is anyone n a similar position?

  • Hiya.  It could be terminology.  Some consultants seen to use "palliative" to refer to the "incurable but treatable" scenario.  But society uses "palliative" only in the end-of-life context.   I'm on immunotherapy, but it's treatable and the aim is to reduce the tumour and mets which it is doing.  Palliative is designed to relieve symptoms like pain.  

    Perhaps the "nothing can be done" is referring to the incurable position or the mets because the fact you're on immuno suggests to me there is some disease management ongoing.  

    We've had this kind of discussion about the "palliative" definition before.  

  • Hello MarkWFD and welcome, having been in healthcare for 15 years 5 of which were in cancer care, i agree with Mmum palliative means not curable, but treatable, I know it's only been 10 weeks since your diagnosis and you are having a difficult time emotionally but we all went through the same emotions as you and found a way to move on as you will, take care, Eddie

  • Thanks and I’m really pleased to hear your treatment is working.

  • Thanks for this reassurance.

  • Its a little like, we say, incurable others say Terminal, which for me and others says the end, well i have been incurable, nearly seven years, 

  • Hi MarkWFD, I agree with the others, the terminology can make a huge difference  especially to how we feel, 

    The reason we use incurable is because treatment can make a big difference to our life expectancy and in the meantime they are developing new drugs all the time! I started a Trial Drug for palliative care that has since been licensed now. I stopped the drug in Sept 2016 after being on it for over 3 years. We have been waiting and watching ever since!

    These drugs are expensive so they would not in my opinion  prescribe them if they did t think they had a good chance of working! Good luck! Post here and let us know how you are doing and this may keep you in a positive frame of mind!

    .

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi MarkWFD, I am incurable but treatable,  secondary in lungs as well as othere places. I'm on immunotherapy  and have had no change and am stable. 4 years know. I asked how long at the beginning amd was told 12 to 18 months. But these new drugs are giving us extra time which is great. Keep posting and talking always somebody here to chat. xx

    Moi

  • Hello Moi, something happened to the forum so couldn't reply. My brothers gone to Portugal, only place he ever goes to.

    Eddie

  • I like Portugal as well, lucky man, a little  warmer than here. xx

    Moi

  • Moi my foreign travel consists of  5 five ferry trips to Belgium and Holland to Christmas markets. Was hoping to go to Australia last Tuesday but need an Op on the 19th, so maybe get off a little late

    Eddie