NEW Private Group - Triple Positive Breast Cancer (TPBC)

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,040 ✭
edited August 13 in Community news and events

Hello members,

If you have been diagnosed with 'Triple Positive Breast Cancer' (TPBC) or supporting someone with this breast cancer type, you may have asked whether we have a private group available for people. Currently we do not have a dedicated group, however there are several members who would like to see a specific group and we want to create the conversation:

What is TPBC? TPBC is breast cancer that has higher-than-typical levels of estrogen receptors, progesterone receptors, and HER2 protein (human epidermal growth factor receptor 2). Hormone receptor and HER2 status are determined during breast cancer diagnosis. You can read more about the role of hormones and HER2 via our website Hormone receptor-positive early breast cancer 

Please provide feedback as to whether you feel you or someone diagnosed with TPBC would benefit from having access to an Online Network private group (Please leave your comment in this discussion thread)

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Comments

  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,040 ✭
    @Ned01 @Tri @AllyJay
  • arpie
    arpie Member Posts: 7,938 ✭
    Terrific, @Mez_BCNA - I hope that the group 'is created' - as their story & treatment is so different from those of us who are usually PR/ER+ and Her2- ......  
  • Tri
    Tri Member Posts: 127 ✭
    Hi @Mez_BCNA
    I would have found a triple positive breast cancer group very helpful. 
    Main benefits -
    *understanding the commonly used HER2+ targetted drugs and hear how others have experienced their different side effects 
    *different subsidies for one or two of the treatment drugs (eg pertuzumab aka Perjeta)
    *typical timelines, decision points and potential for deviation over the course of treatment
    *the usual treatment duration (generally 14-15 month timeline)
    *the duration of the treatment itself by drip (in my case 4 hours initially and later 1 hour) and pros or cons of a port-a-cath
    *The different ways the drugs can be given (some people have IV and others may have injections)
    *Understanding the way oestrogen is also taken into account and at what point the aromatase inhibitor treatment (usually) comes into focus 
    *whether to pause (or not pause) the second part of the immunotherapy treatment for radiation therapy 
    *If you’re also a person, as I am, with Invasive Lobular Carcinoma it’s helpful to know about ILC, even though HER2+ is less common in ILC statistics. 
    *In the early days after initial diagnosis (based on a biopsy) there’s often a couple of weeks whilst getting a raft of tests done (MRI, 3D mammogram, PET) and it would have been helpful to have a group during this period, before a treatment plan is worked up, to help appreciate the breadth of experience and different elements associated with being triple positive. 
    It would help work related decisions, financial decision making and help to set expectations for family and friends if we better understand the treatment and its duration. 
  • Tri
    Tri Member Posts: 127 ✭
    PS @Mez_BCNA you might get additional reach if you tag HER2 positive or HER2+ or Herceptin 
  • cathp
    cathp Member Posts: 1 ✭
    I think it would be terrific for all the reasons set out by Tri@_BCNA above. It’s a bit of a different journey.
  • GG57
    GG57 Member Posts: 1 ✭
    Yes please . Great way to get relevant support 
  • bronp
    bronp Member Posts: 1 ✭
    Hi I am new to this group and am triple pos- invasive ductal carcinoma and node involvement. I would love to chat to people in the same position as me :)
  • Tri
    Tri Member Posts: 127 ✭
    Hi @bronp I am so sorry about what sounds like a recent diagnosis- but it is good you’ve found this helpful network. 
    My breast cancer was triple positive too. I have just completed treatment, surgery and radiation therapy which took about 14 to 15 months overall from start to finish. I would be happy to chat, answer any questions. 
    How are you finding your treatment plan so far? 
    I had chemotherapy/immunotherapy prior to surgery and found that quite a steep learning curve!
  • arpie
    arpie Member Posts: 7,938 ✭
    Hi @bronp - sorry to see you join our exclusive little club - the one no-one ever wanted to join .... jump onto the Newly Diagnosed thread & tell us a bit about yourself  & your story so far xx. You'll be able to use that post as an ongoing record of your treatment - which in a year or so, may be interesting to look back on & re-read .... 

    https://onlinenetwork.bcna.org.au/categories/newly-diagnosed

    take care & all the best xx

  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,040 ✭
    Hi everyone,  thankyou very much for your feedback. We have successfully added a new private group today for you all to keep the conversation going! 

    Click on the link below:

    Triple Positive Breast Cancer (TPBC)

  • Tri
    Tri Member Posts: 127 ✭
    Hi @bronp and @GG57 thinking of each of you and really hope you’re doing as well as can be. In case you missed it the new group Triple Positive - HER2+ Oestrogen+ and Progesterone+ has been set up for any questions.
    https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

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