Granulomatous Mastitis

[Java1263]

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?

[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 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 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.  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!

[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.

[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 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 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.

[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.