Adenoid Cystic Carcinoma of the breast

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  • brawleymom
    brawleymom Member Posts: 4
    edited July 2018

    Hey Patti9--


    While you are unique, your experience is pretty typical and you will do great!!!. There is a Facebook site that many of us are a member of that you can hear from at least 30 others of us who have gone through this. It's a great way to get a lot of information. It's called ACCB. I think you have to have a FB profile however. Please seek it out. Many of us started here on this site and continue to chat about everything on the FB site. I had a very large tumor that couldn't get clear margins so I opted for a mastectomy instead of radiation. And, I am coming up on my 12th anniversary of NED (no evidence of disease) so do not worry too much. With good care, you can get all those pesky cells out of there!

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  • movetomaui
    movetomaui Member Posts: 75
    edited July 2018

    Hi patti39:

    Sorry to hear of your ACCB diagnosis. You are not alone but we are indeed rare! You can read my story in a post I made here on May 21, 2018. I had a lumpectomy (without the diagnosis) and after pathology ACC was diagnosed and I did not get clean margins. I then opted for a unilateral nipple-sparing mastectomy. I am currently 5 1/2 years out and cancer free! Like Molly mentioned, we have a group of warriors who all share the ACC of the Breast diagnosis on Facebook. It is a secret group where posts cannot be seen by your other FB friends so its a safe place to ask questions and connect. There are many there that have had lumpectomies followed by radiation. Please try and find us! The group name is ACCB or you can always befriend me (Julie Schachtschneider) and I would be happy to add you to the group. Best wishes to you as you continue your fight.

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  • patti39
    patti39 Member Posts: 3
    edited July 2018

    Thank you so much for the encouragement. I guess this feeling of helplessness is typical until I get a handle on what has happened. Knowing that others have gone through the same experience and have survived is good to know.

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