Inflammatory breast cancer

Carissa_BCNA
Carissa_BCNA Member Posts: 252 ✭
in Newly diagnosed
Moved @Ejray comment from another discussion to its own thread. Please see her comment below.


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  • arpie
    arpie Member Posts: 8,116 ✭
    Sorry to see you here, @Ejray - joining the club that no-one wants to join ..... 

    You can use the 'search' function (on the blue banner) and if you choose 'newest' - you will get more recent comments where Inflammatory BC has been mentioned.   Here are the results - i hope these may be able to help you. .... you can reply to them to revive the thread.
    https://onlinenetwork.bcna.org.au/search?query=inflammatory breast cancer&sort=-dateInserted&scope=site&source=community

    If you put up a bit more info you may get more informed comments .... how long ago you were diagnosed, any surgery & other treatments (chemo/AI/Radiation ...)

    take care & all the best
  • Ejray
    Ejray Member Posts: 2 ✭
    I think I have been pretty lucky to be honest. I found a lump (not usually present for inflammatory) Diagnosed 04/2022 Chemo for 5 months, mastectomy 11/2022 and have just finished radiation. Still having regular immuno therapy until about June. I am just starting to understand the significance of my diagnosis and what a close call I have had. Starting to think about survivorship and reconstruction (2 years). Its been hard to get information, plus I have been focused on treatment I guess. 
  • arpie
    arpie Member Posts: 8,116 ✭
    Great that you picked it up early @Ejray, well done!   Terrific that you're on immuno therapy - it really is the 'treatment of the future' ... 

    Re having reconstruction, you could join the 'Reconstruction Group' AND the 'Flat Chat - No reconstruction' groups to discuss the Pros & Cons of both ..... members post about their personal experiences & it is TOTALLY PRIVATE (and may include photos of procedures) where you can ask ANYTHING to do with reconstruction - or not xx. Click on the pink buttons of any private groups you are interested in joining:
    https://onlinenetwork.bcna.org.au/groups

    If you live outside of major city areas, you may also be able to claim some expenses re fuel and accommodation too ... you can add your 'general location' in your profile - then if we have members living nearby you could have a 'mini support group'!  (We have a regional/rural group too!)

    Feel free to check this thread out, for lots of info on the BCNA forum - including funny bits too (yes, we all need a laugh now & then!) and also gardening, pets, art & craft, cooking & many others ....   Including 'tick sheets' on your ongoing recovery too xx .... 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest


  • RiotAtMidnight
    RiotAtMidnight Member Posts: 35 ✭
    Hi @Ejray - I've only just seen your comment as I don't come here much any more. There is an Inflammatory Breast Cancer foundation in Australia and we have an associated Facebook group - search for Inflammatory Breast Cancer Support Group - Australia and you will find us. We are small but active! And connected with the IBC Foundation in the USA. I was diagnosed in Feb 2021, about a year before you. You'll find lots of stories of hope in the FB group - come and join us there.

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