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granulomatous mastitis User Group
How was your GM diagnosed?
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
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How was your GM diagnosed?

I have had painful lumps in my breasts for the last 7-8 weeks. doctors first diagnosed it as fibrocystic breast changes, but a couple of weeks ago, the right breast started getting worse. last week was daily trips to the doctor, including 2 FNA's.  They gave me 4 different diagnoses, including cysts, breast abscess, etc.  Now they mentioned GM, but said they would need more tests, possibly including a biopsy to be sure.  I am supposed to see a breast specialist soon.  
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15 Comments
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1627204_tn?1302016137
I would say to allow one biopsy...just to be sure. We definately want to rule out cancer. If it comes back GM...accept it and never let a knife hit the skin again. I applaud your caregivers wisdom for using FNAs. Keep reading this forum. There is a lot of information hear. I see a Rheumatologist for my GM, since it is believed to be an autoimmune dis-order. I am happy with the treatment I am receiving. SOOO sorry you are in the pain you are in. IBU and healing clay can help a lot. Check out the anti-inflamatory diet. My stabbing pain stopped almost instantly when I started that. It is too hard to keep up forever...but when my symptoms flare...I haul it out for a while.
My best to you.
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1548207_tn?1303457780
I Was diagnosed after having a biopsy. I actually had a second biopsy done by my breast specialist to make sure it wasnt cancer since it appeared very malignant on ultrasound and mammogram and my family history. I agree with Pandora stick with fine needle aspirations for sure. And try to find a good rheumatologist that hopefully has some experience.  Read thru the forum there are tons of info here that will help u on this crazy journey.  The group is great and such a help.
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Hi.  IBU - does that mean Ibuprofen? I already am on 600mg/dose/4x a day.  I have not heard of the clay. Where you can get it and what does it do?

I have a cone biopsy scheduled tomorrow.  Hoping and praying for good news.
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1627204_tn?1302016137
Wow! That is a huge dose of Ibuprofen. Hope you are eating prunes or taking fiber tablets to combat the constipation. The healing clay, or calcium bentonite clay, can be bought in powder form at a health food store. I emphasize powder because you will mix your own slury to smear on your breast. Some like it thicker, like modeling clay, others prefer slury that dries on the breast. Scroll down and check out the references to the clay. I also found that it helped draw out the puss from the wound, which was really nice. You will want to shower and rince the area after, so I don't worry too much about infection.
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Hi:

I am really sorry to hear you are having problems with your breast.

As you are in the stage of being diagnosed, my own advice would be to be very kind to yourself, to not research each possibly fully right now (if you can help it - it can be terrifying and often for no benefit in the end), and just assume for the best while the biopsies are being done and your diagnosis is being made.

At this date I take it you will have had the results for your cone biopsy, and I am hoping that all is benign and perhaps a cyst rupture or other and you can go on with life.

I would not advise using healing clay at this stage until you have a definitive diagnosis of GM.  If you do need surgery for other reasons, it may interfere.

If you do receive a diagnosis of IGM or GM, then there are a few management approaches that most of us on this site have personal experience with, and we will be happy to assist you and guide you through the personal healing process.

We are all just patientshere, and we have different opinions on the various available treatments (unfortunately that is really all we are able to offer), probably most valuable is the support of being able to guide each other throught this unknown that is GM.

I wish you the best, please post your results if you do care to share.

Jo
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sorry, just realized I didn't even answer your question

I just had what I thought was a cyst in my left breast, very quickly and dramatically change in size, redness on the breast, heat on the site, nipple retraction - and pain onset very quickly, and so I went to my GP, and then urgent ultrasound same day, differential diagnosis of breast infection or Inflammatory breast cancer and then through further biopsies at the breast centre, I was diagnosed with IGM.

I think this is a fairly common onset - painful breast lump, skin changes on breast, that first take the IGM patient to the doctor.

Jo

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Hi.  Just got my test results back last week, and was diagnosed with GM.... was referred to a rheumatologist, whom I saw yesterday.

She doesn't believe in anti-inflammatory diets only on meds. She wants me to start 60 mg of prednisone next week, but I read about the side effects and they are scary!

To top it off, because I have had a positive TB skin test 6 years ago, she wants me to start INH this week, and see how well I tolerate it before I start the prednisone.  The INH is a 9 month process and in people over 35, there is an elevated risk for liver problems....

So now I am stuck between a rock and a hard place. I want to get better (I do have a cyst that sort of erupted over a week ago on my right breast near my nipple, and it is still oozing a little bit), and I still have intermitten pain on my breasts, but Thank GOD it has lessened quite a bit after 2 FNA's, being mindful about what I eat (anti-inflammatory foods), and rest - been off work for about 3 weeks now, since doctors couldn't seem to figure out what was wrong with me, but I am supposed to go back to work in a week.

The Rheumatologist also checked the tru-cut incision from the biopsies (not sure if it is the same as core biopsy, but this is what the nurse assisting the surgeon called it) and she said they looked good.  My GM seems to be bilateral.  

What to do, what to do, what to do...... anyone having to take both INH and Prednisone in this group?
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Oh, and btw, I asked the rheumatologist I saw and she doesn't believe GM is an auto-immune disease.... she said it's a fine line, but she doesn't believe it to be the case...

sigh.... should I start looking for another rheumy?
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1627204_tn?1302016137
ABSOLUTELY! JoJo said she saw 3 before she found one who took her seriously. I am very fortunate to have friends in the medical field. One made some phone calls after I was rejected by the one my Dr referred me to.
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Hi -

I sincerely apologize for not having responded earlier.

My two cents are that this rheumy is prescribing you hard hitting anti-inflammatories which turn off your adrenal glands and down-tick your immune system.  So regardless of her personal beliefs, she is following current standard drug therapy treatment for GM, so I would not leave her based on her belief or non-belief of the cause of GM, (There are many different theories of thoughts out there.)

Most important is how much she listens to you, how available she is to you and how is your treatment going - and do you like and trust her?

Please let us know how it goes.

Jo
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1819745_tn?1317213301
I began with a pain in my left breast area which felt like a pulled muscle.  I went to the ER as the pain worsened.  They diagnosed it as a cyst and I was sent for a mammo and ultrasound; which indicated an abscess.  The mammo only progressed things...2 days after, my breast was very tender & discolored and these spots began appearing, which would ooze with puss.  I was referred to an amazing breast specialist who performed an abscess drainage procedure on me.  The spots continued to appear and ooze and my breast had turned almost purple.  (it felt like a fire cracker was sitting inside my breast)  I was then thought to have an immune difficiency problem and was referred to an infectious disease doctor.  They put a pic-line in me, in which I had to medicate myself through an IV at home for at least a month.  They tested me for Lupus, TB, etc.  Everything kept coming back fine.  My cultures were not growing anything - everything (other than my breast itself) was normal.  The breast specialist sent me for a chest MRI with biopsy.  I guess things were looking as though I may have Inflammatory Breast Cancer, which I had read about and was extremely terrified.  The breast surgeon performed an excisional biopsy, taking a piece of my breast about the size of a golf ball and sending it off.  At this point my breast looked like a sad, leopard skinned ant-eater.  He sent my cultures & biopsies off to a couple of different medical universities for further findings.  In addition, he was able to reach his mentor out of state and finally came up with the diagnosis of Idiopathic Granulomatous Mastitis.  He then sent me to an immunologist who highly recommened putting me on Enbrel, which is used to treat Rhuemitoid Arthritis.  I read the possible side effects of Enbrel, and that in addition to the apprearance of my left breast and the fact that I was only 29 years old and had hoped to have more children, I made the decision to have a bilateral mastectomy with immediate reconstruction.  I could not bare the thought of being on a medication that I would have to inject myself with for the rest of my life.  It was logical to me to just have them removed.  I now go for a mammogram annually to be sure that no cells from the disease have returned and follow up with the breast specialist.  At this point I have been very blessed with no reoccurrance of the disease.  

I'm new to this forum and realize that it has been over a month since you have posted your question, but I would definately, if you have not already, go through with the biopsy to rule out cancer.   I will keep you in my thoughts and prayers and I wish you all the best.
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Hi Mom, Hi Geo

Wondering how things are going Mom - how is your breast.  I have never heard of anyone having positive TB test in this group, or maybe positive but not having to taking the drug you mentioned.  (For anyone new: TB is always tested among GM patients as it is also a granuloma based disease and also because the immune suppressant medications generally prescribed to treat GM, by suppressing the immune system can allow TB or other dormant illnesses to become active and pose risk to the patient.)  There is also a form of TB of the breast which can present like GM.)

The vast majority of us have taken prednisone as it is still the gold standard in treating GM and as you probably know, it is a very strong drug with strong and unpleasant side effects. It effectively shuts down your entire adrenal gland and the adrenal system is responsible for many functions in the body.  If you are on it, let us know any side effects and we can likely support you with our experiences or suggestions for managing  treatment symptoms as most of us have either been there or are there - many also have had to stop treatment due to adverse effects and then move on to other drugs or have Methotrexate combined with the Prednisone treatment as it appears to lessen recurrence of the GM upon weaning of Prednisone...anyway let us know any questions or anything we can do to support you please.  They are strong drugs but GM can be a very strong and invasive disease.

Geo - I read your account of how GM presented with you with such empathy.  The terror and stress of having a disease that no one understands, and having to make such loaded decisions without proper info is probably the biggest challenge many of us will ever face health-wise.  I applaud your strength and many of the young women here have made similar decisions, some farther along in the path, some at the outset like yourself.  Very brave and I am wishing you full healing.  You deserve it.

Jo
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Tonight is the first time I saw this forum, thank you JoJo as I see that you are the person responsible for the creation.  I was given the diagnosis via pathology in 2006 and tonight is the first time that I heard that it was considered to be an autoimmune disease. I read that some persons seek treatment through a rheumatologist, this is new to me. My origins of my IGM were having a breast infection, called my regular GP had a ultrasound, radiologist verbaly erroneously diagnosed Inflammatory Carcinoma Stage IV. After sobbing in my car called my GP who directed me to surgeon did biopsy voila diagnosis. Surgery removed mass, have had a couple of recurrences no lesions, just an oily discharge from nipple with pain in breast and horrible fatigue. Have had this happen a couple of times treatment was antiobiotic 800mg 3x a day. Usually kicks it out though I'm trying to figure out what is causing it to come back. I've never had TB, IUD or any birth control (husband had a vasectomy) my last child was 8 years old at diagnosis and nursed both children for a year after birth successfully.  Please share your thoughts regarding the autoimmune link, thank you for taking the time to share your personal thoughts and feelings.
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Hi Painter:

really sorry to hear what you have been through

some of us have never had children or breastfed at all, although that is the profile for the majority of patients - so as to what brings it on, I don't think any of us have any idea - women have changed their diets, their lifestyles, stress levels, you name it...without finding much of a link

IGM or GM was first recognized in 1972.  When I was diagnosed in 2007, the literature available at that time described it as extremely rare (only a few hundred cases worldwide); and that as it mimics Inflammatory Breast Cancer so closely even on biopsy, mammogram, etc., there is a real danger of misdiagnosis.

One of my own greatest concerns, and push to get more education out there in patient and caregiver communities, is that I believe that women are being incorrectly diagnosed with Inflammatory Breast Cancer when they in fact have IGM.  Their treatments are therefore not correct.

As you know the cause of IGM is not known.  There are some really bizarre causes...in certain remote regions of the world.  But they don't fit the majority of us.  Giving birth and having taken birth control pills seem to be implicated somewhat, so there might be a hormonal factor.  Most women have breast-fed in the past, and as the nipple is an entryway in to the body, there is some thought that there could be introduction of a bacteria which then causes reaction.  Other causes I have heard mentioned are cyst rupture, foreign bodies, physical blow to the breast etc., widespread granuloma diseases...Anyway I am not sure where the theory of autoimmune came about - if it is because the disease tends to respond to anti-inflammatories, so they theorize it must be immune related.  Not sure.  Any interference with the breast tends to make the inflammation worse - therefore cutting is generally kept to a minimum and drug therapes with prednisone, methotrexate, and some of the newer anti-inflammatories is generally attempted.  

Some doctors do treat with antibiotics with some success I believe.

Anything I know is from reading and may be not accurate as my memory is not great.

I do have a listing of good articles, and I am rebuilding the www.granulomatousmastitis.com website I have to better get this finformation out there.

I personally believe it is autoimmune in my case because of how I feel before and after a flare.

Most of us have been biopsied and tested for everything and all is sterile...but there could be a bacterial or fungal cause that is as yet unknown to the medical community, so they don't know to test for it.

Does this make any sense?

The abcesses are thought to be the byproduct of the bodies cells fighting off what it views as a foreign invader...the 'pus' is cellular debris.  Autoimmune conditions happen when the body mistakenly starts to attack its own tissues due to something going wrong with the bodies defense or immune functions.

That is my opinion anyway, important to note I am just a patient, not a doctor.

I will try to find some article links to forward as well.

I hope your breast stays settled and you don't have any more occurences.

Jo

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Just another note - generally a patient is treated by a breast specialist, in conjunction with a rheumatologist - the rheumatologist is on the care team as they best know how to administer the prednisone, methotrexate, and other anti-inflammatory drugs if that route is chosen...
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