Granulomatous Mastitis

Hi there does anyone know if there is a forum or support group available to help people who have been diagnosed with chronic Granulomatous Mastitis?

[Noelle04]

I don't know, but I would like to find one.  I was recently diagnosed with Idiopathic Granulomatous Mastitis, and it's been hell.  I would love to find some support.

[odyssey26]

I have been diagnosed with granulomatous mastitis.  I've had 6 operations in 5 months.  The disease appears to have slowed down now.  I'm looking for a support group too.  I live in Auckland, New Zealand.

[Java1263]

Have you seen this post by odyssey26?

"I have been diagnosed with granulomatous disease mastitis.  I've had 6 operations in 5 months.  The disease appears to have slowed down now.  I'm looking for a support group too.  I live in Auckland, New Zealand"

[BhumikaMD]

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.

Let us know if you have any other doubts or if you need any other information and keep us posted on how you are doing.

Also post us on what was advised by your physician.

Regards.

[LonePair]

I am diagnosed with GM last month. The symptom first showed up as a mass in the middle of August. In the beginning it was treated as a cyst, then as an abscess from infection, then eventually was finalized as GM because culture showed no infection and biospies were no cancer cells. I had 4 operations so far. The doctor left the wound open so I am still waiting for the wound to close. I suggest you see experienced breast specialist for this disease.

[guigudizhu]

I was diagnosed Granulomatous Mastitis on breast with chronic drainage in 2007. I went through 3 surgeries in one year and it finally healed and recovered. I started to have this disease in August 2006 and had a first surgery on my breast.
In April 2007 the breast infection happened again, and I had a second surgery at Stanford Hospital. I came back home immediately after the surgery, and I had to ask my husband to help me change the medication. But I still have hard lump around the operation area.
The doctor mentioned to us that they've only seen one similar case who had taken a medication for 18 months, with side effect on liver, and has to take the medication for the rest of life.
They suggested that I take this medication.
However, I think this is high risk, so I chose to return back to China for treatment.
On July 3, 2007 I had a third surgery at in Shanghai China.
This surgery cleaned out the infection remaining from the previous two surgeries.
I stayed in that hospital for two months. Every morning the doctors treated me with Chinese medicine powder in my wound to kill the infection. Every once a while they tested the infection level, I took Chinese medicine twice a day. On September 4, 2007 my wound closed and I was discharged from that hospital. Then I had taken Chinese medicine for 6 months.
Now I have completely recovered, my breast is soft and there is no more hard lump.
In January 2009 I went back to that Chinese hospital, did some examinations, and the lymph caused by the infection under my arm had disappeared. I had stopped taking medication since March 2008.
That hospital is the only Chinsese hospital with over 70% success rate on this disease. There were over thirty patients in this hospital with the same disease as me while I was there. New patients keep coming in while existing ones recover and leave.
I want to share our success with you, I know this is very difficult experience for people with similar situation, and the disease may stay with the patient for the rest of life.
Personally I think it's insufficient to just do surgery in the hospital, but leave the day-to-day after care to the patient and the family, it's not possible to completely kill the infection in this way.

Annie

[Miriamkh]

A support group was just started for those of use dealing with this disease. Let's exchange information, learn from one another, etc. I found the group by doing a search.

[Mzbowtie]

I too was recently diagnosed after undergoing the insane "guinea pig" treatment of having to rule out any other possibilities.  I have had two ultrasounds, one diagnostic mammogram, two biopsies and been placed on varying antibiotics only to be advised it is IGM.  I underwent a 5-week course of steroid treatment (Prednisone) which began at 20 mg twice a day and gradually reduced to once a day and then lower, tapering doses.  The result was that it made "some" improvement but not enough that satisfied the surgeon.  She does not want to perform surgery on me...at all.  This whole issue began in July of 2009 with a very large mass...both palpable and visual on my left breast.  Through the process of eliminating any other diagnosis (ie cancer, infection) it turned into the initial mass plus a second mass of equal size in the site of the second biopsy and two lesser satellite masses which were described to me as dilated ducts.  During the course of the steroids I reported to my surgeon that as soon as the dosage was lowered the symptoms were returning.  It was over the Christmas holidays and so I did not get a speedy response.  Instead I was seen in the first week of January and told we needed to be more aggressive.  I am now on what they call a "pulse" treatment of 60 mgs of Prednisone for a week and 40 mg for two weeks.  Although I am experiencing many side effects with the steroids I must admit that while on the 60 mgs it responded.  However, I have been on 40 mgs for six days and the pain and inflamation (inflammation) is coming back.  I just read online about Methotrexate and am prepared to go armed with this information next week when I see my surgeon.  When I inquired about having my breast removed and wanted to know if this auto immunue disease would attack any other body tissue other than breast tissue (at this point in the process I would welcome the removal of my breast if it meant I could heal and be pain free) the answer I received was, "I believe that is the Prednisone talking."  I am frustrated.  Some days I believe I'm on the right track and some days I feel like I am on an endless loop of "we don't know and are taking our best guess."

[breasthelp]

I too have finally been diagnosed with GM w/ abscess.  It first occured in my left breast and after multiple episodes of resolution after antibiotic therapy & needle biopsy, I finally got relief from open excisional biopsy (also 2 in office aspirations after surgery).  I was asymptomatic for approx 3mos and now I am having the same problem in my right breast!  My flareups occur upon having my period.  I have not taken any steroids yet as my doctors seem to not know much about this problem.  

[Miriamkh]

I was on steroids for 4 months. I had serious side effects and the prednisone stopped working once my dose was lowered. I don't believe it really helped me, just briefly stopped some of the inflammation. Be careful with methotrexate. It is a chemotherapeutic drug with potentials to cause serious long-term damage to the liver and/or can create cancer later in life.

[Mzbowtie]

This news saddens me.  It is apparent not many medical professionals know much about this condition.  I was advised by my surgeon that one of the defining characteristics of GM is that it is UNILATERAL and would never impact my other breast.  Hearing how yours not only returned in the original breast but later came back in the other is disheartening.  I can only imagine your frustration.

[Mzbowtie]

Thank you for the heads up regarding Methotrexate.  I will be sure to do a thorough research on it.  The steroids work at very high levels but I am unable to function in daily life while on them so high.  Once the dosage lowers, the symptoms return...maybe not to the extent they were before but still it worsens on a lower dose.

[lgski]

I was diagnosed with GM in August '09. Initially I had been told (by a radiologist MRI), that I had Inflammatory Breast Cancer and instead (Thanks goodness), I actually had Chronic Granulomatous Mastitis.  I have had 3 abscesses, 1 abscess surgically removed and am now considering having bilateral prophylactic mastectomies.  No one can give me much information on this condition and my mother died of Breast Cancer at the age of 41, so I am very anxious about having recurrent, painful abscesses.  I'm not sure if I am making the right choice, but I feel like I have run out of options.  

[JoJo45]

Hi - I have just sent you a link to a GROUP we have started here for IGM.  I am so sorry to hear of your pain and the indecision this disease causes because no one understands it...but at least there are a few of us on here who do have this disease and do understand what affects it has physically, mentally and emotionally, so hopefully this community will help us all.  You are not alone.

Jo

[lillkagri]

28 year female from Norway who was diagnosed  GM for three weeks ago.Have had large breast mass since in the beginning of february.
Would love to hear from someone else with this illness. Hope du hear from u ! My epost adress : ***@****

[JoJo45]

Hi -

I am sorry to hear about your diagnosis, but please be comforted in that a number of us here have seemingly 'made it through' this disease...not without some scars, emotionally and physically, but there is a process and you are not alone in having this happen to you.

There seem to be a number of different ways to treat GM - some treat without intervention and it goes away, some need much stronger intervention...

And if you are like a number of us there are times when the pain and the drainings are so overwhelming you just wish for it all to go away.

Anyway please check out the other thread here - Success stories for GM and I and am also hoping some other members will respond to you -

Do you have any specific questions, do you have a good caregiver?

Let us know what we can do to ease your anxiety and treatment.

Jo

[MarilynHillyer]

I was diagnosed with IGM back in Oct 2009 after numerous mammograms, ultrasounds and a biopsy that resulted in an abscess that drained three weeks after the biopsy.  It is now March 2010 and I am on my second week of prednisone taking 40mg a day(I started at 60mg). All the lumps in my breast have either disappeared or reduced greatly in size, but my doctor wants me on prednisone for another 10 weeks!  I don't like the side effects and neither does my family but I can live with it because it is helping
.

[JoJo45]

Hi Marilyn - I will send you an invite to a group we have here for GM and IGM.  There are others in the same position as you right now and I think you will find some comfort and info in messaging with them.

Sending healing thoughts your way...Jo

[WLD]

Hi I am 29yrs old and was diagnosed with GM in Sept 2009. I’ve had 3 surgeries in the last 6mths. I have to say that this rare condition is extremely painful. It’s so frustrating that there is no cure for this rare condition. I had a doctor visit and he had a talk with me about my options #1 steroid, # 2 cancer med & # 3 mastectomy. Im so frustrated with condition… its so painful. I don’t understand why this happens?  
Thanks 4 hearing me out. Mirna

[Mzbowtie]

Sorry, I have been away from the site for awhile.  I went back to the surgeon only to be told they had left me on the steroids too long and my body was responding badly.  I broke out in an unsightly rash around my face and neck.  They never answered me as to what may have caused it but I have a sinking suspicion it was from the night sweats and steroids.  The other issue I am having is swelling of my legs/ankles and face.  They immediately lowered my dose and began tapering me off quickly.  I went without any type of medication for about three weeks.  Last week the surgeon scheduled me for surgery yesterday because it was returning in the original breast and appears to be forming in the right breast.  I agreed at the time but once I left I started thinking.  Initially my surgeon was against surgery since she said you literally hack away piece by piece of your breast because it is a vicious cycle of surgery, regrowth, surgery.  So I began to wonder, why does she want to do a "biopsy" surgery (only taking a portion out) and not a full masectomy?  Her reasoning for not taking the entire mass out is because it is so large it would leave my breast deformed.  It appears to me she is going back on her earlier conviction of no partial surgery but for unknown reason.  I have asked for a masectomy months ago as I am so tired of the pain and general ordeal and only wish to have it done.  And yet I still am told no.  After leaving her office, I called and arranged for a second opinion and cancelled the surgery appointments.  I should have had a biopsy surgery yesterday but I will be meeting with another breast surgeon through and entire different medical group today.  I am prepared to accept it if she supports the original surgeons path of treatment.  I just needed to hear it from someone else as I have lost faith in my doctor through all the trial and error treatment I have been receiving.  

[mickeyleigh76]

Is there any financial relief for this? I am left with close to ten thousand dollars that my insurance company will not cover. Surgery, pathology and now no insurance company will touch me because its pre-exciting. Not only is the money frustrating but the fact that there is no relief from this. I had surgery a week ago and am still in pain, and deformed and no one even knows what this condition is let alone if it will ever go away.

[JoJo45]

Hi Mickey:

I am so sorry to hear about your battle with IGM - please join our support group we have on here to share experiences.

I want to build up enough information in one spot to get some doctors, researchers interested and get some progress, so other women do not have to go what we have been through -

JoJo45

[mickeyleigh76]

Is there any other treatment for this besides surgery and steroids, why is research not being done for this. If they can figure out how to give a man an erection then they SHOULD know how to give us some relief. I hate when you have to tell someone what you have and they treat you like you are faking the pain, oh its just mastitis, but its not its not that simple. The way it was explained to me by my doctor was that it is a very rare condition thats all he would say its rare, I didnt realize that meant we know nothing about treating it. I will be having implants put in to make up for the deformity and possibly having a mastectomy, I still dont know how im going to pay for any of this.

[JoJo45]

Hi Mickeyleigh:

I think your anger and frustration is shared by most of us.  Hard to believe that no one knows what this is or how to treat it, when it is so serious and invasive. I think it is most often mistaken for, and treated as, inflammatory breast cancer - in my opinion it may not be so rare, it is just that awareness is just now growing in the medical community.  And then when the do diagnose, the optimal treatment plan is very unknown.  Mastectomy or wide excision is still the most standard I believe, others treat with heavy antibiotic and then prednisone or predisone + methotrexate.  Some recent studies have been done on methotrexate alone.

For some, they have one bout and then it completely resolves...others have very chronic and serious outcomes. I've had three bouts.  Hurt like $%^^^!!!

Personally I think it is autoimmune.

Please come and join our IGM support site on here.

Sorry can't be more helpful - I am starting to email researchers and physicians that are publishing on this - we need to have a standard of care established.

Best to you -  I know it is very painful, frustrating and terrifying disease.  But a number of us have been through it - so at least we can share.

[Mzbowtie]

Just a quick update: I went for my second opinion and the second breast surgeon wondered why I was not given an MRI.  I did not have the answer to this of course.  She also advised me that she never prescribes Prednisone for her patients because it only treats the inflamation (inflammation) and once you are off of it, it returns again.  She never discussed Methotrexate as an option either.  She explained to me that the biopsy surgery that the first breast surgeon wanted to perform on me was not the proper course of action either.  She explained it like this.  Why would you only take some of the mastitis out and then seal up the body over an abcess (abscess) that responds like infection even though it isn't?  You wouldn't and the reason is that without a large area to drain, the body would create a larger abcess (abscess).  So, she said if/when we go to surgery I should expect to leave with ports.  She said it is a bigger pain and hassle but that this type of issue needs to heal from the inside or bottom out otherwise it will just continue to happen.  So I left waiting to hear if my insurance would approve the MRI.  They did as of last Friday so now I am waiting to schedule the appointment.  The weirdest thing about that is that I have to have the MRI exactly ten days after the first day of my menstrual cycle.  Otherwise I risk getting a false positive reading due to hormones.  On a side note, I have begun experiencing arthritic-like pain in all the joints of my body.  I do not know if it is a side effect of what was left of the Prednisone or coming off of it.  It also may be another "auto immune" disease.  Who knows.  All I know is that I am in severe pain and move like I had the work out of my life and am sore the next day.  Sadly, no work out.  The pain in my hands is bad enough that I some times am unable to apply pressure to a pen in order to write or hold the object.  I am seeing my primary care physician for this later today and am assuming I will be referred to a Rheumatologist.  I just found it odd that some women on here say they are being treated for their IGM by a Rheumatologist.  That is why I mentioned this in case it may some how be related.

Thanks for listening everyone!

[shannonhhoward]

I had my first round with IGM last year, they thought it was regular mastitis, was treated unsuccesfully with anitbiotic after antibiotic, then surgery. The wound never healed. I had to go to wound center daily and wear a wound vac. 2 surgeries later it finally healed. I had a horrible scar, reconstructive surgery and life seemed good.
This January it came back. I knew at least this time it was IGM and asked for steroids, I have been on them at varying doses since then. It is treating it but not getting rid of it, every time I go under 20 I flare up. I hate the side effects. My doctor transferred me to a rheumotologist and now I am trying methotryxate and tapering off the predisone. I just want my life back and this madness to end. Does anyone know if you have a complete masectomy does that end this nightmare- I am honestly at the point that I could handle that as long as reconstructive surgery was an option. Very frustratting.

[revathi81]

I woke up with a lump in my left breast in march of 2009 while i was pregnant with my 2nd baby .It was my 7th month .The doctors at El Camino Hospitals,Mountain View,Ca did a fine needle biopsy in April  didn't get enough information and did another needle biopsy and diognised me with IGM.My doctor advised me to do nothing ,but to keep a close watch on the size of the lump .The size of the lump didnot change and it didnot abscess till i had my baby .When my baby was 4 weeks old it absecced ,but no pain at all.The abscess ruptured that night in the shower and i went to the doctor next morning .Doctor asked me to come back if it abscesses again ,bcoz he wants to do a pathology of the liquid .He also advised me to plan on weaning if the breast abscesses again.fortunately it didnot abscess again,but kept on leaking milk for 2 months.then it stopped leaking and lump also shrinked in size.in feb 2010 my gynic felt my breasts and send  there is no lump.i am due to visit the surgeon yet,which iam planning to do after weaning my baby.this is my experience with   IGM,hope this helps

[Mzbowtie]

I ended up having a double mastectomy mid June.  Best decision I've made in a long time!  Three weeks of recovery time and my life is almost back to normal.  I still experience residual joint pain but no where near like it was before.  I just got the approval to begin a reconstruction process.  This was pending any signs of reoccurrence.  So far so good.  Keeping my fingers crossed.

[llb930]

Thank you for sharing your story.  I hope that you're able to get your life back now!  I was diagnosed with GM in Sept 09.  I did 5 months of Prednisone.  Like most stories I've read about... as the steroids decreased, the mass started to return.  Although the steroids may be treating the inflammation, the decreased the mass to a size that wouldn't leave quite a deficit in my breast when removed.  I had the mass removed in April '10.  I knew full well that the recurrence opportunities were high, but was please with the result of the surgery.  Last week I started to notice some tightness in my chest - thought I was having chest pains.  Within 12-24 hrs, the tightness turned into pain in the GM-affected breast. I have been in excrutiating pain all weekend - worse than any I'd experienced when I had the mass or even post-op.  I'm hoping that all I need is antibiotics, but I have to wonder if this is just the beginning. :(  I appreciated reading the stories and knowing I'm not alone.  I have full support from my family and friends, but I feel like I'm getting skepticism from my boss and co-workers who are obviously ignorant about this mysterious disease.  I would greatly appreciate it if you could share the Group website for sharing more GM stories and information.

[eluriajen]

Hello. I would like to join the support group for granulomatous mastitis. I have not actually been dignosed, but I am fairly certain that this is what I have. My problems started with a huge mass in my right breast. I had several doctors who told me that they had no idea what was wrong with me. Then I saw a breast surgical oncologist, and at my first appointment she told me that she was 80% certain that I had breast cancer. I have had MRI, ultrasound, mammogram, and 3 core needle biopsies. My first biopsy showed inflammation consistent with infection, so they started me on antibiotics. The second and third biopsies didn't provide any further information. I completed 7 rounds of antibiotics before finally deciding that I couldn't take any more of them, as they were making me very sick. At this point, through my own reading, I had realized that if we had culture results for an "infection," then they should be able to match an antibiotic with whatever was causing the infection in order to treat it more effectively...however, my doctor didn't order cultures on any of the 3 biopsies. I asked her why not, and she responded that she had thought I had cancer, so it didn't occur to her to order cultures. The first biopsy created a terrible wound that drained and oozed pus for a couple of months. It finally healed on its own, however there must have still been infected material in there, because as soon as the wound healed, I developed two abscesses, one very large, and another small one. My doctor's solution was that she could do surgery and remove the entire area, however she said that this might make it worse, and there was no way to know for certain if it would help - and then I would be missing a huge chunk of my breast. So...I refused the surgery. I have read about a study done in China where 50% of patients, after an average of 14.5 months, healed completely from granulomatous mastitis. So I decided to wait. I started taking probiotics, because I figured that even if they didn't help with the breast symptoms, at least they would restore my immune system from all of the antibiotics. They seemed to help significantly for a little while. The two abscesses basically ate through my skin after a couple of months. Once they had eaten through to the top, they burst open, all the fluid came out, and after draining for a couple of days they started to heal. Both have healed completely, except that there is a lot of scar tissue. Unfortunately, through all of this, I have continued to have very painful, changeable, growing lumps inside my breast. Now I am developing another abscess. It is very discouraging. I have been seeing a naturopath. She has prescribed everything from tea tree oil to colostrum pills to covering the woulds with clay to draw out impurities. Some of the suggestions have helped (like the clay, which was very nice and soothing on the wound, and helped it to heal, and tea tree oil, which helps a lot with the pain), and some of them don't seem to have done anything. I'm still determined to try and wait this out, but the abscesses concern me, and the pain and continued destruction of my breast tissue are very upsetting.

[bluebutterfly2222]

For anyone interested:

Here is a link to the granulomatous mastitis user group:

http://www.medhelp.org/forums/granulomatous-mastitis/show/707