Signed the consent forms

Yesterday I went in to the local cancer centre to sign the consent forms for my first line treatment. I was shocked to see the words "Palliative care" on the form with 'improved quality of life". I had already been told by the oncologist that there is little chance of complete cure and they treatments will only potentially lengthen life expectation but the word palliative felt like a shock. I feel absolutely fine - no symptoms at all and yet this word suggests end of life care to me. I've felt better today from reading posts on here of people's experiences but that was a very wobbly moment. Is this what everyone is told? Mags 

  • "Palliative care"
    Is this what everyone is told?

    No, absolutely not.  On diagnosis in Nov 2021 I was told my RCC was treatable not curable.  But when I signed the form it was drug A + drug B and nowhere was palliative care mentioned.  Palliative care is a heck of a lot further down the line I understand.  My oncologist has never mentioned it to me.  I'm on a treatment plan for an active cancer.  There are loads of treatment options yet according to my onco.  

    This is my personal take on it, but if you are on a first line treatment you are not on palliative treatment by definition.  Because if 1st line doesn't work (ie cancer progresses) you move onto a 2nd and 3rd line etc before the consultants acknowledge there is no licenced drug route available to them.   

    "Not curable" is a completely different concept to palliative treatment.  Sounds like someone somewhere is confused.  

  • So I looked it up on the cancer research website and it says 

    palliative treatment is to relieve symptoms and improve your quality of life. It can be used at any stage of an illness if there are troubling symptoms, such as pain or sickness. In advanced cancer, palliative treatment might help someone to live longer and more comfortably, even if they cannot be cured.

    Who knew? I think we all associate it with end of life care. I really wish the medics would understand that non medics are often knocked sideways by the words they use. The other one that got me was "aggressive cancer". I imagined it going through my body like an angry bear. The oncologist said it just means it's likely to spread.

    Anyway, panic over. 

    Thanks as always

    Mags x

  • But you said in your original post that you don't have any symptoms.  So therefore applying the definition from the cancer research web that palliative is to remove symptoms, you're not on it.  

    Edit later on! Just another thought!  Did you consultant explain the objective of the treatment you are due to start?  Is it to slow down, stop, or reduce the growth of the cancer - if so, this is a standard treatment against an "active" cancer and not palliative.  

  • Yes it's to slow down and hopefully stop growth as usual. I think the form is a standard one with boxes to tick. If I get the opportunity I'll talk to them about the effect of the wording. I suspect I didn't see anything else on the line after I saw that word. UIm sure I'll feel more comfortable after I find out for sure how it's going to be managed and when it will start. It's the unknown that creates the most anxiety. M

  • Hi, My dad has just signed off on his treatment for a very aggressive ccRCC and his onco has also said palliative, which scared the bejesus out of my Mum and I. Don’t think he has really heard that but though. The hope is his treatment nivo/Cabo will slow the spread