Xanthogranulomatous mastitis

Posted by cartersgirl2 @cartersgirl2, Sep 24, 2023

When I had my bx it showed xanthogranulomatous mastitis. I was told there are very few cases of this and not much research has been done. Does anyone know of any research or studies that have been done or are in progress? I also have the chek2 gene. Any information would be appreciated. Thanks

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Chris, Volunteer Mentor | @auntieoakley | Sep 24, 2023

Hello @cartersgirl2 Welcome to connect. I am sorry you are dealing with something so rare. That is always a double edged sword.
I don’t know the first thing about this except what I just read in looking for info for you, but it sounds like it is usually found while looking for BC. I did find some information and if you scroll you can see other projects that you can read about it.
https://pubmed.ncbi.nlm.nih.gov/19351366/
Did yours come with an IDC or DCIS diagnosis or without?

cartersgirl2 | @cartersgirl2 | Sep 24, 2023

Yes, the original bx with the radiologist did not find the cancer just a lot of inflammation. When they did a bx under anesthesia they found the mastitis and the her2+ IDC.