Granulomatous mastitis

[xangelx]

hi i was told i had Granulomatous mastitis a few months ago after an ultrasound scan and a needle biopsy i was giveb pain killers for the pain but the lump is still there and the pain sometimes its really itchy aswell when i went back to my doctors i was given more painkillers is this normall for it to be there this long and will it ever go ?

[gottahavejava]

Hi, I was also diagnosed with IGM in 2002 in my L breast. It abcessed and I had a I&D with biopsy, he left it open to heal and was fine for a year. Almost a year to the day I had another lump so he resected that one in the same manner but I had another before that was even healed. So he sent me to a breast specialist who finally diagnosed it IGM and suggested steroids. I refused and wanted to let it heal on it's own. Within a month I was in ICU for complete Adrenal failure. They said I had to have mastectomy. After 3 opinions I agreed to it and it was done 3/04. I opted for reconstruction with abdominal tram flap at the same time. Praise God I have had NO problems untill now, I am experiencing pain in that breast again. So after reading these posts...I am getting concerned it might have returned.

[tbird213]

My conservative treatment seems to have been successful, atleast for now.  I detected my lump last Sept and by Dec it had abcessed.  I got a second opinion and second doc who cleaned it all out, let it heal with open wound packing, went on antibiotics, and everything has healed and cleared up.  Ultimately, the docs discounted mycobacteria in my case, but thing the antibiotics still could have helped as an antiinflammatory.  The tissue has softened over time as well.  Of course, I am concerned about it returning, and am having it monitored on a six month basis at this point.  I am very happy to still have my breast intact and sympathize greatly with everyone for whom a mastectomy or similar surgery ended up being necessary.  My thoughts and prayers are with you all.

[morethan1]

I am sorry to hear about your ordeal but so relieved.  I thought I was the only one out here who had mastectomy and IGM returned.  Also was worried that it could spread to my abdominal muscle which was used for reconstruction and now know that it is possible for that to occur.  Looks like I don't need a breast surgeon.  I need a rheumatologist.  I will find one tomorrow.  Hopefully I can get in quickly as I am having another surgery in 6 weeks and don't want to go through this whole thing all over again if they discover the abdominal tissue is affected.  I don't know what a right axilla is.  Is that in your arm?  A lymph node?  Can it spread to other organs, or muscles?  Do you know of any other resources I can tap in to to learn more about this?  Thanks again for your post.  Hope you are still doing well.

[morethan1]

I'm sorry to hear that you are going through this and wish I had an encouraging story to share.  I had multiple lumpectomies to try to resolve my IGM and ended up with double mastectomy at the end anyway.  Today, I have recovered pretty much from the reconstruction but the IGM has returned in some remaining breast tissue and I am going back in for surgery in a month.  Now I am concerned that it will spread to my abdominal transplant and then to the rest of my body.  They can't remove everything, after all.  Though somedays I think of that as an alternative to dealing with this again and again.  If you go with a conservative approach, you may spare some tissue and recovery time could be minimal but chance of recurrence is high and you will worry every day if it's back or if it's coming back.  I am no doctor and probably not in the best mental state, but I would recommend a more aggressive approach to put your mind at ease and hopefully reduce the chance of recurrence.  Please keep us posted on your progress and your decision.  I'm anxious to hear how you're doing.

[tbird213]

Its good to hear of a case where the push isn't to just take out all the affected tissue, which in my case is over half my right breast. The surgeon doesn't want to try an incisional biopsy to get the tissue sample the other docs say they need to pinpoint the type of mycobacteria that is at the source of my GM.  He thinks the incisional site will create the perfect environment for the stuff to thrive and would like to move directly to mastectomy without trying anything else.  I am overwhelmed to say the least.  I can live with whatever I have to do, but would love to know about success stories that followed more conservative treatment that antibiotics, despite their own brand of side effects for 6 months to 2 years might bring, might yield.  I am very relieved it isn't cancer, though my doc still won't say that it isn't, despite a clean biopsy and the fingerprint of the mycobacteria.  

[auntshelly]

I'm so sorry to hear your story, becasue it is so similiar to mine. I only had it in one breast, but it was awful. I started having problems that resemebled Inflammatory Breast Cancer 8 yrs ago. After the first open biopsy it was luckily determine it wasn't IBS, but it took forever to determine that it was Granulomatous MAstitis. After attempting multiple rounds of high dose steroids, and multiple resections, I finally had a simple R mastectomy December 2000.
I then attempted a reconstruction in Jan 2001 with an expander and saline implant but the area yet again inflammed and with the amount of pain I was in I elected to remove everything and go without any reconstruction for over 1 year. Then in January of 2002 I attempted a DIEP flap which clotted off after only 6 hours and they attempted to save it (it was a horrible 10 hour surgery that left a crater in my R. axilla and a large scar on my left foot where they tried to harvest a vein to attempt a bypass graph vein). This lead to permant nerve damage in my R. arm and within 2 month the Granulomtous Inflammatory tissue started in my right axilla. After several resections there, I finally found a lifesaver Rheumatologist from Chicago that put my on IV Steroids and IV Remacaid. This stopped the process and I have been in remission for 5 1/2  yrs now.
I did decided last year to again attempt reconstruction, again with the  expander and saline implant (with the blessing of the Rheumy of course) and I'm happy to say everything went wonderful and I look great!!!!
It was a long road, but I'm happy to see discussion boards like this that talk about GM, not many people in the medical community know about it. It is rare, and luckily it is not deadly like Breast Cancer can be, but it sure is not a picnic!!!!!!!!!!!!!
Good luck to you, let me know how you are doing,
Michelle

[BhumikaMD]

Hi,

How are you doing now? Let us know if you have any doubts and keep us posted on what your doctors advise.

Regards.

[odyssey26]

I have Granulomatous Mastitis.  I woke one morning in Aug 07 with a sore breast.  The dr put me on 1 week of augmentin. The pain went and then I felt a large lump (10cm x 10cm).  I had a mamogram and a core biopsy as GM shows the same symptoms of inflammatory breast cancer.  My tests came back benign.  My breast started abscessing.  I've had 6 operations (5 general, 1 local) from Sept 07 to Jan 08.  The disease appears to have slowed down now and hasn't absessed since Jan 08.  I still have a large lump, however, it's shrinking and the breast is a lot softer now.  I was told the lump is inflamed tissue.  The drs also said there is no point cutting the lump out as the remaining tissue is likely to become inflamed and there'll be another lump.  To help diagnose GM, the drs need to do a special test to look for 'corynebacterium'.  When the normal bacteria checks are performed, corynebacterium doesn't show, drs have to go hunting for it.  My drs at North Shore Hospital, Auckland, NZ performed tests and finally found it.

I hope this helps.

All the best,
Shiree.

[BhumikaMD]

Hi,

How are you doing now? Let us know if you have any doubts and keep us posted on what your doctors advise.

Regards.

[bumie25]

I was diagnosed with granulomatous mastitis in Dec.06.  Nine surgeries later, I am having double mastectomy in April. My first doctor was clueless.  I had to get a second opinion at Emory Crawford Long Hospital(Atlanta).  The doctors at Emory diagnosed me within a week.  I had resection of the breast and thougt that was the end of it.  3 months later the other breast was infected.  God will give you the grace to go through your ordeal.  Good luck.

[DrBhumikaMD]

Hi,
Granulomatous mastitis is a benign inflammatory breast disease of unknown origin that usually affects young women of childbearing age. The recommended treatment for granulomatous mastitis is complete resection or open biopsy with corticosteroid therapy. The chances of recurrence are high and so a regular follow up is essential. Goodluck.

[xangelx]

i have had the lump for over  a year now i thought i was diagnosed this year but it was last