Cancer Research UK main site

I don't understand why no treatment or prognosis.

Scorch
Offline

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!

  • Hello and thank you for posting.

    I am sorry to hear about your mum's diagnosis of metastatic bladder cancer, and I can understand you would want some more information on her prognosis and what happens from here. Of course, as you say, they can only guess from their experience, but something more specific than what you were given would be helpful.

    Sometimes doctors can feel it is a lot of news to give in one appointment, and the information is more broken down, as it is so much to process. Also, it may be that as not everyone always asks about a prognosis, or necessarily wants to hear one, the doctors don't always go into that detail at that time.

    As you have said you can see changes in her already, and you know her better than anyone, so of course you may notice these changes sooner.

    What may help is at the next appointment say to mum that you have some questions that you would like to ask. She can then decide if she wants to remain in the room whilst you ask for a more accurate idea of what they see for your mum from here.

    Hopefully, she will be referred to a palliative care team to offer symptom management and emotional support in the community. It may be their team, when they come to meet and review Mum that can also give you some prognosis-type information from their experience.

    Take care and do take care of yourself at this time. If you want to talk to the nurses on the helpline the number is 0808 800 4040. Lines open mon-fri 9-5.

    Sarah

  • Offline in reply to CRUK Nurse Sarah

    Thank you for your reply Sarah, 

    The consultant has discharged her so she won't have anymore appointments. They introduced her to the McMillan nurse but they only told my mom and step-dad to contact her if she needs anything. We are not going to get anymore information so, I think we have to take one day at a time.

    I'm not coping at all well, I went to my GP who has prescribed diazepam. Right now, I wish I don't feel anything because the emotional pain is unbearable. 

    I appreciate your reply.

    Thank you ,

    Lisa

  • in reply to Scorch

    Hello Lisa, and thank you for getting back to us.

    I am sorry that you are struggling, please do look after yourself at this time.

    It may be that you can organise to talk to your mum's Macmillan nurse, if she allows her information to be shared, so you can explain that you haven't been given any prognosis information. But other than that it is taking each day as it comes.

    Take care Lisa, and do give us a call if you want to chat.

    Sarah.

  • Offline

    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

  • Offline in reply to davek

    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

  • Offline in reply to Scorch

    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

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.