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granulomatous mastitis User Group
sterile abscesses
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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sterile abscesses

Hi ladies. I have just been wondering what they typically do for sterile abscesses. I know they will not respond to antibiotics so how do we get rid of what they are unable to drain? Do they ever just go away on their own? I am meeting with the breast specialist once again tomorrow and I want to have some suggestions for him since he has never dealt with this before. Also, are all GM abscesses sterile or do some contain bacteria?
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Avatar_m_tn
Good question.  I am not sure what you mean by sterile abscesses.    Most of my abscesses have contained bacterial infections.  I look forward to learning more.
   I wish you all the best with the breast surgeon.
        Pat
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1657910_tn?1302375661
Hi,

All of mine have been sterile and so my surgeon does not treat with antibiotics.  I have never had mine drained, they just "pop" on there own and drain on there own.  I am assumming that the body just reabsorbs anything that doesn't come out.  You can also get scar tissue, etc.  So maybe it's all part of that.  Not really sure about all of the workings inside of the boob, just know about what comes out of the boob.  

Hope that helps.  But the biggest rule that most women have learned is do not have them go cutting into your breast to do poking around, etc.  until they really know what they are doing.  It is not good for the GM.  

Fibromommyx3
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1627204_tn?1302016137
I think if we knew the answer to this question....a lot of progress could be made in effectively managing this. I asked my surgeon to look thru all the notes and tell me if any of the cultures taken from my abcesses grew anything, ever. It was like that was the first time she had done that. She was dumfounded. Then she smiled and said "I think we are going to be learning a lot from you." At least she was humble about it.
I did not go on anti-biotics the last time they drained. I had no secondary infection either.
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Avatar_f_tn
Hi Suzanne:

The vast majority of GM abcesses are sterile.  There has been some association with certain types of bacteria -- here is the entry on Wikipedia (which I created in plain English and someone has gone in and put in to medical terminology - probably a doctor!...I might have to re-edit :)   Anyway, you know you have a rare disease when you create the wikipedia entry for it...gotta keep laughing.
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Characteristic for idiopathic granulomatous mastitis are multinucleated giant cells and epithelioid histiocytes around lobules. Often minor ductal and periductal inflammation is present. The lesion is in some cases very difficult to distinguish from breast cancer.

Patients usually present with a distinct firm mass mostly in the subareolar region. It occurs on average 2 years and almost exclusively up to 6 years after pregnancy, usual age range is 17 to 42 years. Use of hormonal contraceptives, prolactin raising medications and hyperprolactinemia have been implicated in the pathogenesis or as predisposing factors.

Other diseases that may cause granulomatous inflammatory lesions of the breast are tuberculosis, sarcoidosis and Wegener's granulomatosis and must be included in a differential diagnosis.

Granulomatous mastitis is most often completely aseptic and has been frequently associated with elevated prolactin levels but infectious causes must be considered as well.

Idiopathic granulomatous mastitis is thought to be an autoimmune reaction to extravasated fat and protein rich luminal fluid (denaturized milk).[1] This form is often associated with increased prolactin levels while some infectious forms are often associated with diabetes.

Granulomatous mastitis can be associated with corynebacteria infection, particularly infection by C. kroppenstedtii.(Taylor GB. Paviour SD. Musaad S. Jones WO. Holland DJ.Pathology. 35(2):109-19, 2003 Apr)

This disease is still very rare and therefore optimum treatment protocol is still being established. Treatments include antinflammatory drugs, (prednisone, methotrexate), and very often full mastectomy is the most successful treatment. Wide excisions are often complicated due to the disease characteristics.

__________________________________________________________________

ANYWAY - while most abcesses are sterile (meaning they don't test positive for any bacteria or fungus that have been identified to date by the medical community - could be we have something they just don't know how to test for) - anyway lots of docs are treating with antibiotics, although the patients seem to feel little if any progress from these drugs, and of course they upset the body's balance

Many GM masses are solid - or the actual inflammation in the breast cells feels solid (remember the abcesses and their contents are just supposed to be inflammatory debris from your immune cells attacking your own tissues - mostly pus)...some docs excise the masses, but frankly most of us have them (or scar tissue) and they are just there.

Would your doctor be open to consulting with one of the 'specialists' we are creating or know of here...that might be the best way to ensure you are receiving the most proper care.

Jo


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Avatar_f_tn
Thanks for your comments, ladies. Very helpful. Jo, I am going to suggest my doctor consult someone else-Is there anyone in particular I should ask about? I am not happy with how little he knows about GM-I wouldn't mind if he seemed to be interested in learning but every I have to go in there he doesn't seem to have any knew plans or even suggestions.I know it must be scary to have to treat a disease you know little about but if I were in his position I would most definitely be consulting other physicians. Its frustrating. I am finished the 3 months of prednisone I was initially prescribed (I had no improvement ) so I am hoping he will have another plan of action. I'm going back in today with my third abscess in 3 months and increasing pain (which is at the other side of the breast than the where the visible abscess is--weird). Anyway, if anyone knows of any 'specialists' in Canada I will definitely mention their names. Thanks again for responses. =)
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Avatar_f_tn
Hi Suzanne:

I have now referred a couple of other members to my care team:

I have had wonderful care since 2007 at the Henrietta Banting Breast Centre at Women's College Hospital in Toronto.  I have been seen by Dr. Tulin Cil, Surgical Oncologist and also followed by Dr. Pamela Lenkov.  Dr. Lenkov is I understand currently seeing one other case as well as mine.  The pathology as this hospital is also considered first rate in Canada.

The phone number for the breast centre is listed here along with other general info:

http://www.womenscollegehospital.ca/programs/program62.html

I am sure they would be pleased to see you/consult with your doctor and I know they are struggling to understand the disease.

There have also been a few cases treated at Sunnybrook Hospital in Toronto by the Rheumatology department.  I elected to continue my care at Women's College and have sought out an independent rheumatologist at Western Hospital who assists in my care and deals with my spinal inflammation/and oversees my breast inflammation drug management.  I chose him because he is smart and a researcher in immunology and rheumatology -- I wanted someone with an open mind to lead my care decisions with me.

I have found the care at Women's College to be very compassionate, professional and engaged with me in finding the best answer for me, with very minimally invasive approaches, they don't believe in disturbing the breast, other than when absolutely necessary.

I was thoroughly biopsied, managed with Cephalex antibiotic (500 mg 4 times day) during each flare to prevent secondary infection, (I was cultured for everything and all is sterile).  I do find the antibiotic helps a bit during flares.  I do not take antibiotic other than when I have an active abcess (abscess) or drain.  We also aggressively drain any new areas of inflammation through guided ultraound drainings by a radiologist, and this to me has been key in managing flares.  

I hope you doctor gets in touch and gets some guidance so you can have the best care possible.

Cheers, Jo

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Avatar_f_tn
My abcesses were always sterile as well.  
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Avatar_f_tn
Hi there Suzanne:

Did you have your abcess (abscess) dealt with  - is your doctor offering any more solutions, or has he increased his knowledge by networking or research?  I don't fault him for not knowing about the disease before you presented, but now that he has a patient, he needs to build his knowledge or refer you.  Not fair to you.  Not adequate care.

Yes, treating this rare disease must be difficult for the caregivers, but really nothing compared to our pain and frustration.  

Hope you are doing well, Jo
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