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Mets to bone only

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lissalou
lissalou Member Posts: 48

Hi,

I am stage 4 and have mets to bone only. I aspirated on an almond and was hospitalized for 5 days. I went in to have my regular labs and to have my med list reconciled since the hospital had made some changes. I asked for a raised toilet seat and a walker. The palliative care nurse then says "are you thinking about bringing hospice on board". The cancer hasnt left my bones. Needless to say i was shocked. I hadnt even thought of hospice. I see the oncologist on Monday hopefully he hasnt thrown in the towel already too.

Melissa

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  • cyathea
    cyathea Member Posts: 330
    edited September 2022
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    Melissa, that nurse didn’t think before she spoke. Ugh! Chalk that up to stupid things people say to people with MBC!

    It irritates me when people assume that I can’t do things because of my MBC, especially when they don’t include me in work conversations because they’ve already assumed I’m dying. We’re all dying! And yet we are all still trying to live our best lives

  • nkb
    nkb Member Posts: 1,561
    edited September 2022
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    Melissa- no one knows how long they will live and bone only has a very good prognosis- lots of drugs out there to try. I know people don't believe this, but, your doctor is wanting you to succeed very badly and have a good life! It is their joy

    it was an ignorant comment by the nurse- as if only people on hospice need walkers or toilet extenders??

    The psychology of this disease is a nightmare- so many people think they are in control of whether they get cancer or any other disease- (hahahaha) and you obviously screwed up if you got cancer. so many victim blamers - and toxic beings. I haven't told anyone I have cancer for years- it changes the dynamic and the relationship - it's a bit tricky at times- but, so glad the conversation isn't all about my cancer. I used to worry someone would be mad that I didn't tell them- now I think- so what-

    I have also been judged by others with cancer for "looking healthy".

    Stay well

  • emac877
    emac877 Member Posts: 675
    edited September 2022
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    I agree with the sentiments here. That was a thoughtless thing to say. The prognosis in the literature isn't really up to date from what I have found. Most of the prognosticators use data from 2015 or 2016. Since then there has been really good success noted with several of the lines of treatment. Check out the Bone Mets thread (https://community.breastcancer.org/forum/8/topics/789492?page=2717#idx_27166). It's not as active as some other threads but I think you will find that there are a bunch of us who have been living with this for years with reasonable quality of life.