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granulomatous mastitis User Group
A couple of questions
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
248 members
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A couple of questions

Hi. I joined this site about this time last year.  I had discovered a lump in my left breast and been sent for mammogram and u/s. Results of those indicated a punch biopsy was necessary for a suspicious mass.  Went for biopsy and was told by the surgeon (before the biopsy took place) what this was inflammatory breast cancer and there was no chance it could be anything else. Biopsy came back indicating no BC but GM instead. I was elated that it wasn't bc (didn't know anything about GM then).  Same surgeon then told me he didn't believe the biopsy results and wanted to do a lump extraction & further biopsy the results.  Same result. Incision healed beautifully. Then I found this site and did some reading. One of the people on here (JoJo45 I think) referred me to a specialist in Toronto. Just before I saw him I had my first flare up.  I wasn't major, it was painful but seemed to go away without actually erupting through the skin.I saw him and he confirmed what the biopsy indicated.  That was back in Jan/Feb 2012.  I have been clear since then.  Then on Christmas Eve (3 weeks ago), I developed a painful and hard area in my right breast.  As it happened I had my annual physical last week. My doctor (who knows of my GM but knows absolutely nothing about it), did a thorough breast exam.  The hardness and soreness had completely disappeared.  Then maybe two days later it was back. Since then it has definitely become more sore and more tender.  For those who breastfed, it feels like engorgement +blocked duct + mastitis.  I am supposed to have a mammogram next week but I'm terrified that if they try to compress my breast, it may explode or I may pass out from the pain.  I guess my questions are:
Is it possible for GM to appear (and be diagnosed) in one breast and then appear in the other?  And, does the pain I'm describing fit the GM bill?  I was very deeply affected emotionally last year by the breast cancer "diagnosis" and it has taken me a long time to move forward after suffering depression and anxiety for months and months.  I feel like I'm at the edge of that same abyss right now so any help would be appreciated.
3 Comments
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Avatar_f_tn
Wow.this is my exact experience. ..I was soooo depressed thinking I had inflammatory breast cancer..and just about 3 weeks ago it has now started.on my left breast andit *****..I'm really considering doing a mastectomy and then implants. ..I can't handle the pain of it. What I have noticed is that a lot of these ladies the symptoms happen always late fall. .around December. ..it's crazy to me.
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Avatar_f_tn
I had my IGM in both breasts.  I was also initially diagnosed as having inflammatory breast cancer.  Then they thought it was some sort of infection, went on for a couple of months.  After a surgery where they removed a large part of my right breast I was diagnosed as having IGM.  I did the prednisone-methotrexate route for a few months and then decided to get a full double mastectomy.  
Interestingly, my pathology from the mastectomy showed that I did have (undiagnosed) lobular carcinoma, a type of breast cancer.  My surgeon's theory was that all the inflammation from the IGM may have caused the cancer.  Nobody really knows.
But for me it felt like I "dodged a bullet" in that I wouldn't have known the difference of a cancer lump from all the IGM lumps.  So maybe my mastectomies saved my life?  who knows.  
I wish you all the very best.
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Avatar_f_tn
Wow that's scary. ..thanks for sharing your story.
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