I don't understand why no treatment or prognosis.

My mum saw her consultant today. He told her she has stage 4 bladder cancer. They could do surgery but it would be extensive and they doubt it would be beneficial, plus there is a high risk due to the anaesthetic. They told her Chemo is too aggressive and probably wouldn't be beneficial either. I know it's spread to other organs and the lymph nodes. The saw on her notes she is religious and told her "Your god will look after you" They decided not to treat the cancer at all. When asked how long she has, the doctor told her, some people with it have lived 3-4 years. I can't see this being the case with mum though. She looks very pale, she is sleeping more than normal too. 

I'm so worried. I would rather them say if it could be 6 months or 4 years. There is such a big gap in between, surely they could give a better answer. 6-28 months or 3-4 years but to say "some people have lived with it 3-4 years" when they aren't treating it at all, it just doesn't sound or feel right. I don't understand.

I'm find it is very, very hard to cope, I can't stop crying and my blood pressure is through the roof!

Parents
  • Hi Scorch,

    Sorry to be blunt, but is unlikely the consultant made this decision, more likely your Mum opted for do nothing after being given the options. I know from experience how difficult that can be to deal with, especially if you weren’t able to attend her consultations to ensure your Mum was genuinely making an informed decision. My Mum’s own decision took a while for my brothers to accept. She told me that after three years of chemo, surgery and radiotherapy, she simply didn’t have the energy to take any more. Unfortunately, she hadn’t had that conversation with my two brothers - just me, Dad and my sister. 

    Estimates of survival times only really work for large numbers of patients, they are pretty useless at individual patient level as us  patients and our cancers are all individuals and there are so many variables.

    3 to 4 years sounds possible, if not probable, it largely depends on how slowly or quickly the cancer grows. 

    I hope that, as a family, you find a way through this.

    Best wishes,
    Dave

Reply
  • Hi Scorch,

    Sorry to be blunt, but is unlikely the consultant made this decision, more likely your Mum opted for do nothing after being given the options. I know from experience how difficult that can be to deal with, especially if you weren’t able to attend her consultations to ensure your Mum was genuinely making an informed decision. My Mum’s own decision took a while for my brothers to accept. She told me that after three years of chemo, surgery and radiotherapy, she simply didn’t have the energy to take any more. Unfortunately, she hadn’t had that conversation with my two brothers - just me, Dad and my sister. 

    Estimates of survival times only really work for large numbers of patients, they are pretty useless at individual patient level as us  patients and our cancers are all individuals and there are so many variables.

    3 to 4 years sounds possible, if not probable, it largely depends on how slowly or quickly the cancer grows. 

    I hope that, as a family, you find a way through this.

    Best wishes,
    Dave

Children
  • Offline in reply to davek Unpublished Reply

    Dear admins - there’s a typo on my post - it should read “for my brothers to accept”. 
    If possible, please amend and remove this request.
    Thanks
    Dave

  • Hi Dave, 

    Thank you for your reply. I appreciate you being blunt because I can only go by what my mum and step dad told me. To be honest, if my mum made that decision, I can accept it and understand. I don't want her to suffer. I spoke to my GP because I was struggling and needed support. He was very honest with me, he took the information I gave him regarding her health normally and her symptoms and told me that her prognosis is poor. My stepdad said she has lost her appetite and I know she is sleeping more. My GP said, from experience, he would suggest it would be 12-14 months. 

    I know it's going to be very hard but that I will get through this. To a certain extent, I have to do what's best for me and do only what I can cope with. My GP made me realise that because of my mental health. It' s not easy to navigate unknown waters but it is easier now I have support.

    Thank you for your honesty,

    Lisa

  • Hi Lisa,

    I can only emphathise with your situation and the frustration we all feel when we realise that whatever we do won’t change the outcome. 

    All we can try to do is make our loved one’s final months free of unnecessary stress, make happy memories together and help deliver their choice of end of life experience. 

    It won’t be easy, especially as we all go through anticipatory grief, but somehow we all seem to get through this in our own ways - however impossible that seems at the time. 


    Best wishes
    Dave