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granulomatous mastitis User Group
10 years after bilateral mastectomy
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
242 members
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10 years after bilateral mastectomy

Hi Ladies. I first was diagnosed with GM (after an initial false cancer diagnosis) 12 years ago. We certainly didnt have groups like this back then, so I was very alone. After 18months of higher and higher doses of prednisone, I decided enough was enough and to take control and get rid of this horrible disease. I was happy with my recontruction, and decided to keep my nipple areola complexes. I have had 10 good years, with no looking back. But as I type this I have another lump in the areola area. Ultrasound has ruled out a cyst. It is painful and brings back memories. A biopsy will follow in a few days. My bet is that the GM is back. I guess it was a calculated risk on my part. There was a tiny amount of breast tissue left. I just wondered if anyone else had had this same experience, and to say, what an insidious disease this is!!!
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I have read about this happening somewhere.  If I find those sites again I will post them here.

I did talk to a doctor here about mastectomy and they said they wouldn't do it for this condition, because there have been instances of recurrence in other fatty tissue.  
Let us know how this goes and what happens, ok?  

Good luck!  
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