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Topic: Adnoid cystic carcinoma (ACC)

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: May 12, 2016 10:23AM

Cathydr123 wrote:

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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May 17, 2016 06:41AM Moderators wrote:

Bumping for some responses from members!

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May 17, 2016 08:32PM hyphencollins wrote:

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!

Multifocal IDC with EIC. Oncotype 23. Palb2 mutant. Dx 5/2014, DCIS, Grade 3 Dx 5/2014, IDC, Left, 1cm, Stage IIA, Grade 1, 1/11 nodes, ER+/PR+, HER2- Surgery 7/31/2014 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/2/2014 AC + T (Taxol) Radiation Therapy 1/26/2015 Breast, Lymph nodes Hormonal Therapy 3/9/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole)
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Aug 6, 2017 08:31PM - edited Aug 6, 2017 08:42PM by Calandra2

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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Jul 25, 2018 08:39PM patti39 wrote:

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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