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granulomatous mastitis User Group
After 13 years...diagonsed today!
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
258 members
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After 13 years...diagonsed today!

My first lumpectomy was in 1999 on my right breast.  My second was in 2002 on my left breast.  Both times they thought it was cancer and both times it was benign.  However, the incision from 2002 would take 3 additional surgeries and 2 years to heal.  It continued to drain, they would biopsy the fluid and say the only thing it showed was inflammation.  The surgeon even told me that the pathology basically said my breast was full of "ucky" stuff.  Over the last 13 years, I went from having this condition once or twice a year to three or four times a year.  Last fall, my surgeon sent me to an infectious disease doctor.  
Although she did not diagnose it at the time, she eliminated many other causes and said the next time it happened, to call her first before being put on antibiotics.  I called her and was seen by her yesterday.  She said she thought we needed a new set of eyes and sent me to a surgeon who specializes in not just breast oncology (or cancer) but specialized in breast diseases.  I went to see him this morning for what I thought was going to be another of many punch biopsies.  Instead after reviewing my history and the pathology he is "99%" certain that I have granulomatous mastitis.
They are scheduling a diagnostic mammogram to rule out cancer (which after all of these years I'm not even concerned that it is) but I guess it is proper protocol.  He lined out my options as a) continue to live with it; b) be put on a dose of steroids-potentially for life or c) a double mastectomy.  While I'm not ruling out any option at this point, I have said for years that if someone could tell me that by doing a mastectomy, it would cure this, I would do it in a minute.  
I thank each of you who have shared your stories and cannot believe that all of the years of internet searching breast disease I have never ever read of this.  If I had found this group 10 years ago, I could have diagnosed myself I think.
My prayers are with those of you suffering from this and I feel blessed to know there are others who have been and are on this journey and that I am not alone as I have so often thought.
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