Stage 4 lung cancer care - Is this normal?

My dad was admitted to hospital just over 2 weeks ago unable to walk, talk, eat and very confused etc. and diagnosed with stage 4 lung cancer that had metastasised to his brain and adrenals, the next day. He was transferred to a respiratory ward (prob because only available bed) and has been on dexamethazone to reduce brain swelling ever since. He has not seen an oncologist  but was being treated by the respiratory consultant on the ward and we were told he would have an oncology nurse who we were introduced to but then we never saw again. The consultant told us that if the dexamethazone resulted in significant improvement in reducing brain swelling and dad becoming less confused, able to eat and walk, then he hoped it would be possible to do a biopsy and look at some cancer treatment options, including for the lesions in dad's brain as these are currently small (so possibly shrinking these). Surgery is out and we are well aware any treatment will only be trying to extend dad's life. Without treatment, he was given a few weeks; with treatment a few months.  Dad has shown what we think is quite some improvement - he is far less confused; able to converse with us and joke etc; eating and drinking on his own; able to sit in a chair; but so far not able to walk. He was discharged from hospital to a community hospital yesterday. The community hospital is run by local GPs and it is now really unclear what his treatment plan is, or whether he will have any oncology support.   My mother and brother hope to speak to one of the GPs tomorrow morning after he's visited dad on his rounds. To be honest, throughout this entire process, it's been impossible to get any answers from anyone - and we have asked. Should we be concerned about what is happening with my dad's care? I am very surprised no oncologist has been or is now involved in my dad's care or treatment plan. None of the professionals seem to be talking to each other - we were not told that moving dad to the community hospital would mean no further involvement with the main hospital specialists, for example (the move to the community hospital happened far quicker than anyone anticipated - we were told there would be a waiting list and it could be several weeks, dad was moved the next day). What is most concerning is that noone is discussing doing anything about the underlying problem - i.e. stopping the cancer spreading. If the hospital decided no treatment could be given, surely they should have discussed this with my mother, rather than just transferring my dad to a community hospital for palliative care? Sorry for the lengthy message - I am trying to support my family remotely as I live at the other end of the UK and wasn't able to visit this week (I go up again tomorrow). I am also extremely worried my Dad now has much less time than the consultant let on and he's actually been sent to the community hospital to die! Any advice you could give would be very much appreciated. We are very aware dad has a limited time left - we just want the professionals to be up front with us as to what is happening. My dad is also now asking what's wrong with him and why he is in hospital, and we haven't told him and need to know if we should do this urgently if his time is very limited.

  • A warm welcome to Cancer Chat smurkle!

    Thank you for sharing your dad's story. It seems that you feel a little bit left in the dark and that everything is a bit confusing and unclear communication wise. It is surprising that they haven't discussed things further with you and your mother when they decided to transfer your dad to a community hospital. If you are worried about the reasons why your dad was sent to a community hospital, perhaps next time you see his consultant you could ask all the questions that are in your mind at the moment and that you feel you need answers to.

    It must be difficult for you not to know what to say to your dad when he asks questions. I hope you will hear from some of our members who I am sure will be very touched by your story and I am sure that they will have some excellent suggestions for you based on their own personal stories and experiences.

    Our nurses are also available on this free number 0808 800 4040 if you want to talk things through with them - their line is open Monday to Friday from 9am to 5pm.

    Best wishes,

    Lucie, Cancer Chat Moderator