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MBC Brain Mets

Hi. I’ve recently been diagnosed with extensive small brain mets, additional to mets in multiple other organs and bones. I’m currently almost half way through whole brain radiotherapy. I’d like to connect with others who are going through, or have experienced, WBRT. I feel a bit isolated in this, as no one in our local MBC support group has experience of brain mets. Thanks, Judy

Comments

  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 835
    Hi @Judy_M sorry to see you here.   Sending you a hug.  @Mez_BCNA are the moderators able to join Judy up with the mets group please.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,245
    So sorry to hear of your diagnosis, @Judy_M .... 

    Message sent, xx
  • Cath62Cath62 Brisbane Member Posts: 891
    Big hugs 🌻
  • Judy_MJudy_M Member Posts: 15
    Thanks Cath. And to you 🤗🌼
  • Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 348
    Hi @Judy_M

    The living with metastatic group can be found here https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer. This is a private group so you will need to apply and one of the BCNA mods will accept you. If you have any questions, please let me know.

    @Mez_BCNA
  • ChevvyChevvy Member Posts: 37
    Sending virtual hugs 🤗🤗🤗🤗... I hope you find support so you dont feel so isolated in your journey. X
  • Judy_MJudy_M Member Posts: 15
    thank you 🙏 
    I have a great support network but no one close by who’s had experience of brain mets, apart from a couple here and on Facebook. I wonder how rare brain mets are? Best wishes to you Chevvy x
  • arpiearpie Mid North Coast, NSWMember Posts: 6,245
    edited September 2021
    Sadly, @Judy_M - it is not all that rare. :(   I've read that up to 20% of those with mets may develop brain mets.  :(   

    That is great that you have good family & friend support xx

    Where abouts are you (roughly - town/city) .... members may know of local services that are available to you (You can add your town to your profile.) 

    take care xx

  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,410
    @Judy_M can I ask what your original BC was ? if triple negative there is a facebook group for stage 4 triple neg... 
  • Judy_MJudy_M Member Posts: 15
    Thanks but No. ER+ HER2-  
  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,410
    Ok just thought that might of been another support area for you. 
  • BagnaraBagnara Adelaide Member Posts: 36
    Also Judy_M .. I forgot to say that I would  have loved to  catch up with anyone with brain mets. Meeting up in person with someone going through similar experince would be great , but I don't know of  anyone near me , so  finding that online group through Facebook has been supportive for me . 
  • Judy_MJudy_M Member Posts: 15
    Hi and thank you for your kind and reassuring words. I’ll join the Facebook group and find you there. I see you’re in Adelaide so no chance of us meeting up, as I’m in Victoria on the Bellarine peninsula. I agree that meeting in person can make a huge difference. One of our local MBC support group members is returning home to Adelaide later this year. (No brain mets for her at this stage). Warmest hugs. Catch you on FB 🤗💖
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