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MacMillan nurse visit - parents told that my dad can't be cured despite not being told this by his consultants. Is this normal?

Jillbgl
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Hi, my dad has a massive HCC live tumor. He has recently had SIRT and we are awaiting scan results to see if it has shrank it. Today he was visited by a MacMillan nurse. I wasn't present and my mum & dad are quite upset by some of the things she said. She basically said what the consultants haven't, that he is not curable and they will just keep him stable for as long as possible. She then discussed what end of life care he would like, such as does he want hospice or home care. 

We were under the impression they were giving him SIRT with a view to possible resection in the future. 

Could it be this nurse was sent to lay the path that this is not possible now??

Or do they have this discussion with everyone just Incase? 

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    Hi Jill, 

    Obviously only your Dad’s care team will know what his prognosis is but, in my experience as a patient, the MacMillan nurse will only have minimal information about his diagnosis and prognosis.

    They seem to follow roughly the same script for everyone, including recording end of life care preferences. I was a bit miffed when I was asked if I’d like to have a look around my local hospice before I’d even started chemo - that was back in 2013 and I still haven’t visited that hospice.


    Good luck to your Dad.
    Dave 

  • Hi Jill,

    Macmillian can certainly make mistakes, they did with me.  I had a indeterminate tumour on my liver which I had removed last August.  Whilst I was waiting for the pathology results to find out whether it was cancer or benign, I received a letter from Macmillan, offering me a place on a support group meeting as a 'newly diagnosed cancer patient'. I knew that cancer was a possibility of course, but I was furious that I had not been told by the doctors first. I rang my specialist liver nurse who said that there must be a mistake as my results weren't even back yet.  Long and short of it was that it was an admin error, because I had had a liver resection, they assumed that I must have had cancer, fortunately for me the results came back that the tumour was benign.  I was in 2 minds whether to complain to Macmillan or not, I finally decided not to as although I had a bad fright, I know that they do good work and had I actually had cancer, I am sure I would have been grateful for their support.

    I would advise your dad to contact his specialist nurse or consultant, to get a clear picture on prognosis if they want to know.

    Best wishes to all of you

    Annie

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