563?1263745088
granulomatous mastitis User Group
My 10" mass cleared in 12 weeks
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
192 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

My 10" mass cleared in 12 weeks

This is not a question, but I wanted to share a positive story.  I developed IGM during the 4th month of my pregnancy with my youngest son (who is now 1).  It was strange -- all of a sudden I started producing milk!  I jumped on-line to try to determine was was going on and proceeded to put ice on my breasts to stop the production.  The milk production stopped, but my breasts got harder and harder. When I showed my OB my rock hard breast, he immediately refered me to a specialist who was wonderful, but had no idea what was wrong with me.

I had a terrible pregnancy - swollen legs, headaches, bruising, tiredness, etc...   My breast hurt to touch or lay on.  So, sleep, that was already difficutl due to my pregnancy, became impossible with the swollen, hard breast.  The craziest thing of all was that the day I delivered, I weight 3 lbs. less than I did when I concieved!  During this time, my OB just kept telling me to drink water and my symptoms would go away.

I was in such pain that I went to the ER 5 days before Christmas and was admitted.  I checked myself out when no one could give me a good answer regarding why I felt so bad after 3 days. Three weeks before my delivery, the mass had grown to around 10" across and 6" wide (I'm already a D, so luckily, I already had very supportive bras).  Another biopsy was done and no breast tissue was found (only white blood cells).  Althogth no cancer cells were present, they were all sure it was stage 3-4 cancer.  

Three days before my scheduled c-section, my breast began to ooze.  First through my nipple, then through the pimples around my nipple, and after delivery blisters developed on the skin of my breast, opened up and oozed continuously.  I should have bought stock in J&J for all the guaze I was using!  The oozing continued until 2 weeks after I started treatment.

So, I jumped ahead, let me go back in time a bit.

I had my scheduled c-section and  8 hours later the drama began.  WIth my fresh incision, I had to stand for a mamogram (mammogram), do a crunch during an ultrasound and finally had to lay on my belly for 45 minutes for and MRI.  No cancer found. Then they thought I had TB, so I was wisked to x-ray and had my 20 hour old baby quarentined from me for 4 hours because the doctor forgot to "clear my record" when the x-ray came back clear.  Then they thought I had a rare form of AIDS (which of course I did not have).  Additional biopsies were done and I walked out 4 days later, with my baby, and no more knowledge about my condition than I did when I walked into the hospital.

FINALLY, two weeks later, my doctor called and told me that it might be granulomatous mastitis -- my symptoms were pretty textbook -- and that I could be treated with steroids and/or methotrexate.  I told her I would think about the options and give her a call back.  In the meantime, I spoke with my sister who is a doc in TX.  My sister had just treated a patient with GM.  They initially tried steriods, but then moved on to mexeltrexate alone and the mexeltrexate cleared up the mass.  So, I decided to go with the mexeltrexate alone.  It sucked to take and I was pretty useless for a day after taking it, but the mass shrunk and was undetectable after 12 weeks of treatment.

I went about 3 months with no treatment, and then started feeling like my breast was starting to produce milk again, so I asked to be put back on bromocriptine (prior to becoming pregnant, I was on bromocriptine due to high prolactin levels after my first child).  So, I now show no signs of the disease, my hormone levels arereat and I had no surgery.

This site gave me great insight and support as I tried to figure out how best to tackle this disease and hope that my story helps others.
Recent Activity
Avatar_f_tn
Blank
CaryMom joined this group
Welcome them!
May 22
Avatar_f_tn
Blank
chiccleats joined this group
Welcome them!
May 21
5501513_tn?1368897754
Blank
Liz5804 joined this group
Welcome them!
May 18
MedHelp Health Answers