Adenomyoepithelioma

LKSHER

I found out today the name of the thing that is so rare that apparently was found in my pathology. I don't know if it was all benign and the IDC was in addition to this or if this became malignant. Apparently, they are now having the pathologist look at everything again. I had a lump since puberty that has been followed. It was always called fibrocystic. It changed. Biopsy and mastectomy showed Adenomyoepithelioma/IDC/DCIS/LCIS.

I am pretty confused about this rare finding and what it means for me. I mean apparently we are talking very rare when it's benign and even more rare when it's malignant. Also, rare.....IDC was found in other breast at the same time.

vconnol

Have this .. hopefully all good for you. There are 2 types one that might recur and become malignant and one thst doesnt. Close monitoring for awile and now they have 3 D mammograms so ask for that. Keep us posted

LKSHER

Won't be having mammograms because I have had a double mastectomy. What I want to know is if it became malignant or is still benign and the malignancy I had is separate. vconnol, tell me more about yours if you will. I am told it is extremely rare.

Marple

I just sent you a PM.

vconnol

sorry, never saw this. I set google alert for adenomyoepithelioma, so I stay ahead of the doctors, really! I had another small mass removed atypia, a couple months ago not the other. Just monitored closely. Did you find out if yours was malignant?Set a google alert. For some reasons the Koreans publish more on this. I don't know where it travels to if malignant. You could research that if it was. Might monitor for metastisis if you are concerned. How are you doing

molecules

Well I'm new here and just had a breast lump removed which was non-cancerous, but the diagnosis came back with Adenomyoepithelioma, lesion extends to margins of resection. Surgeon wants to go back in a remove more to get everything.  My question to him was if he could not identify all of the margins the first time, how will he know from the second surgery how much to remove and will he need to go back in 3rd time.  This Adenomyoepithelioma thing sounds so rare, I'm thinking to ask him for a full mastectomy, followed by a reconstruction and be done with it.  would welcome thoughts or opinions.

NancyK

Hi, All and specifically to MOLECULES I had a Adenomyoepithelioma removed October 7, 2013. My surgeon took a very large margin and all was clear. If she thought that the margins could not be large enough then we would have gone ahead with a mastectomy. If I were in your place I would opt for the mastectomy because what I have read if enough margin isn't clear it is more apt to return. It sure is terrible having this diagnosis, so many unclear options and outcomes. I have check ups every six months. Mammograms, ultrasound, and MRI one each every year. Hoping the best fore you molecules.

Moderators

Nancyk welcome to BCO and thanks so much for sharing your experience !