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granulomatous mastitis User Group
A Doctor I Recommend
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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A Doctor I Recommend

I do not know where to begin with my story.  Basically, I have been suffering for 10 months but was just diagnosed with IGM 3 months ago.  I started having issues when my daughter was 1 week old.  I had successfully breastfed my son for 18 months.  

I was treated as a plugged duct case. To make a long story short - I have had 4 incision and drains. The first when my daughter was 4 weeks old. I continued to breastfeed until she was 8 weeks old when my condition got worse. At 10 weeks, we went in for a major surgery - I had 4 incicisions at that time and quite a bit of my breast tissue was removed.  One of the incision was from one end of the breast all the way to the nipple.

I was not healing per schedule.  Eventually I had a team of doctors - my breast specialist, infectious disease, obgyn, wound care doctor, internal medicine and several radiologists.

In December, I decided to start accupuncture.  The best decision I made - I have been going twice a week and have given up wheat, dairy, meat, caffeinine, soy products and sweets.  I drink Ginseng tea everyday.  My wounds compltely closed in March. I still have pain during my menstrual cycle but I am doing so much better.  

One person on this forum recommended Dr. Roshini Rao in Dallas.  Since I live in Houston, I decided to go see her a few weeks ago.  The nice thing is her group is familiar with the condition.  They have seen about 50 cases in the last few years. It was nice to talk to someone who we could have dialogue with about this. My husband was very happy with our visit as well.

She believes I am in the burn out phase.  All the doctors have said to continue with the accupuncture.  She advocates a topical steroid.  Since I have read this can burn out in a year, I want to wait on the topical steroids until June.  They have seen some trends - they know this will burn out by menopause.  I am 39 so I am not sure how long that will be for me.  I felt relief because all of my flare-ups with my menstrual cycle.  She said there is a definite correlation.

In her group, most of their patients are Hispanic or Asian and were born abroad. I am South Asian born in the US.  The average age is 33 and their patients mostly have had more than 1 child.  They investigated if it was something in the environment.  They did not see any indication of that so far.  

She also told me to get a TB test and a chest xray - just to make sure there is nothing else going on. My TB test was negative. I will go for my chest xray soon.  

Thank you to the person who posted her information. It was nice to talk to a doctor who is tracking this.

I am so thankful for this group.  I have been in communication with someone from this group that also lives in Houston. I am sad she is going through this but it is nice to have someone to talk to.  

I do not know what the future holds - will it get better than worse, will it appear in my other breast, etc. I just know right now I am doing so much better then even 3 months ago. All the doctors have been amazing here in Houston - they have all had my best interest, it just took awhile to figure it out.  They are all very supportive of my decision. In fact, the infectious disease doctor who is also and Obgyn strongly suggested I wait it out.  I am aslo very thankful to have found Dr. Rao.

I hope this helps someone through their journey.  I will continue to post and will let you know if I ultimately decide to take the topical steroid.  
2 Comments
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Can you tell me what Dr. Rao specializes in? I'm wondering, because I am waiting on a referral to see a rheumatologist and was wondering if I should just stick with my breast dr. Since I will be starting treatment/meds soon, I was wondering who would be best in prescribing and treating this. Thanks!
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Dr. Roshni Rao is a breast oncologist. However, she treats all breast issues. She works at UT Southwestern which is research hospital.  Her entire staff was so knowledgeable on IGM.  She has an amazing nurse practitioner on staff.

I have a breast specialist here in Houston who I like but she does not have as much experience in IGM.  They have agreed to work together if I decide to take the steroids.

For my understanding, my breast specialist would adminster the steroids -even if I decide to go with oral steroids.  She will give me two rounds if necessary. If that is not working, at that time she would work with a rheumatologist.

I have a friend who is rheumatologist and was not even aware of this condition. My other friend talked her rheumatologist and he was not aware of it. He does not believe it is autoimmune - he thinks I would have other symptoms.

Dr. Rao advised I go see an immunologist - which I have not done at this moment.  They just want to rule out that something else is not going on.

I hope that helps.
Sandhya
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