Adnoid cystic carcinoma (ACC)

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Cathydr123
Cathydr123 Member Posts: 3
edited July 2018 in Less Common Types of Breast Cancer

I was diagnosed with Adnoid Cystic Carcinoma in October 2015.It is a rare cancer that only affects about 1200 + people a year, the majority in the head and neck area. Getting this type of cancer in the breast is said to be rarer than rare. I had a mastectomy of my left breast at the end of Dec with immediate reconstruction. Tissue expander will be exchanged on May 26. Any information on what to expect is appreciated. Not sure if I want to do nipple reconstruction. Thoughts?

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Bumping for some responses from members!

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  • hyphencollins
    hyphencollins Member Posts: 109
    edited May 2016

    Hi Cathy and welcome, I'm not familiar with that cancer but wanted to wish you well and to say it is so much better once the TES are out!!! Way more comfortable! The surgery wasn't bad, in my experience. I was ambivalent on the nipple reconstruction and got it done and am still ambivalent. I don't think you need to make the decision right away on that piece, take your time if you want Good luck!

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  • Calandra2
    Calandra2 Member Posts: 2
    edited August 2017

    I see it listed as adenoid cystic carcinoma of the breast. Perhaps this spelling would link us up with others?

    I was first identified as simply triple negative invasive ductal but after neoadjuvant taxotere and carboplatin --which shrunk my more than 3cm tumor to 0.9 cm--post lumpectomy pathology came back as ( this rare and "indolent" ) adenoid cystic carcinoma of the breast. Surprise.

    The fine needle earlier pathology was rechecked and agreed. I do understand it might be easy to miss from the 5 tiny needle samples and am glad the chemo did in fact have some effect.

    I have had radiation and am regrowing hair and healing up. And I have been reading all I can find online. Wish I could find more.

    Hope your reconstruction has gone well.

    Good wishes

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  • patti39
    patti39 Member Posts: 3
    edited July 2018

    I see that no one has replied to this is a long while. I have just been diagnosed with ACC, too, during a needle biopsy and then lumpectomy. Have been told it's a rare cancer that usually does not spread. Will be scheduled for another surgery to remove "margins" for safety sake and then probably radiation. These have been difficult, very emotional days for me and my family. I hope outcome is successful and would love to know that others have had good results.

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