Forum Discussion

Lizzie13's avatar
Lizzie13
Member
9 years ago

New Facebook page for Triple Negative BC

Hi Ladies, just a quick note to let those with triple negative know a group of us have set up a moderated Facebook page. If you are interested in being part of healthy discussions feel free to search FB for Triple Negative Breast Cancer Australian Sisters and ask to join. This is a private group and one of the moderators is a Registered nurse and psychologist so all research etc is referenced and all other comments about new treatments, side effects etc are all moderated and are checked against research to ensure accuracy etc.

8 Replies

  • Cosette's avatar
    Cosette
    Member
    9 years ago
    Hi @Lizzie13. Back in August, there were numerous communications in the online network, via emails, and social media about the transition changes, including how groups were going to be affected. I'm sorry that you're disappointed that we didn't personally reach out to you and that you didn't feel supported. We have nearly 17k registered members. Unfortunately, we don't have the resources to identify who has TNBC and enquire personally whether they'd like to take on the responsibility of leading a group. We have the groups that we have because members have requested them and offered to lead them. It sounds like that's what you've done on Facebook and that's great. Best of luck.
  • Lizzie13's avatar
    Lizzie13
    Member
    9 years ago
    Hi Monica, yes the group is called Triple Negative Breast Cancer Australian sisters, and I have just approved your membership.
    Ann-Marie - pity nobody asked for a group leader for this group. Our FB page is a result of BCNA dropping our "group". Having TNBC is VERY different to other forms of breast cancer and because of its nasty destructive and aggressive nature we need lots of support. I never saw nor was asked if I wanted to be a group leader for this group on the BCNA sight. We have now over 100 members and the group has only been going since December, it is strongly moderated by myself (an RN) and another member and is a very supportive group. A real shame we cannot get the same support from BCNA with a group of our own.
     
  • Ann-Marie's avatar
    Ann-Marie
    Member
    9 years ago
    Hi @Monicasfootsteps you will find all the groups we currently have on the online network under "Groups". Can I ask what link you are referring to so I can check it out. @"Soldier Crab" Unfortunately that group did not make it across to the new online network as we did not have a group leader for it.

  • SoldierCrab's avatar
    SoldierCrab
    Member
    9 years ago
    Monicasfootsteps the Facebook page is really supportive I am a member of it. 
    Some groups were removed or moved when we moved over to the new online forums for BCNA.. 
    @Ann-Marie_BCNA ? is there a triple neg group any more ? 

  • Monicasfootstep's avatar
    Monicasfootstep
    Member
    9 years ago
    Hi @Lizzie13
    I have had my results today following surgery, and I also have triple negative BC.  So I hope i can join the FB page, which i have requested. 
    there seems to have been a group in BCNA for Triple Negative but the link doesnt work any more.
  • LITHGOW1950's avatar
    LITHGOW1950
    Member
    9 years ago
    Thank you for this information. I have just requested to join.  Is that all I need to do?