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granulomatous mastitis User Group
Granulomatous Lobular Mastopathy
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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Granulomatous Lobular Mastopathy

Hi,
I've just been told that I have GLM, my doctors work closely with breast cancer care team and my case was discussed fully at their multidisciplinary meeting following a variety of tests, namely mammograms x5, ultrasound, lymph node needle aspiration and core biopsy. I think I have been very fortunate in having such conscientious professionals dealing with my case all my test were carried out within a week and my case discussed as soon as results were in. The pathologist identified GLM and has been adamant about diagnosis, although radiologist clear that ultrasound and mammogram results looked like cancer which is why I had lymph node needle aspiration done,(those results are not back yet). They haven't been able to tell me much more yey but have scheduled my case for discussion atfurther meeting with larger no of breast care specialists, I have an appointment with my consultant on Thursday to discuss findings and options in detail. I've been kept in the loop so far by regular phone calls with breast nurse specialist and my Gp for which I'm very grateful. Being an inquisitive sort of person though I wanted to find out more and can't quite believe how rare this thing seems to be and how no one seems really clear about how to treat it. I'd be really grateful if people could help me with the sort od questions I should be asking on Thursday as I'm finding it difficult to get my head around it all and what it will mean for me, my family, my work(i'm a nurse) and my life. Thank you so much in anticipation of your help, thank goodness i am not alone.
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Hi Linty:

First of all, sorry to hear that you are having this problem and I hope you are not in much pain.

Your care so far sounds very comprehensive and supportive, which is great to hear.  I think you will find that this is most important because as you have noted granulomatous disease of the breast is not common.  In fact I was looking up the name you have been diagnosed with and I found one article stating that ALL inflammatory diseases of the breast, including GM or GLM, comprise just 1% of all breast conditions diagnosed.  So we are all special :)

Anyway, as you know, this is a confusing time.

My advice as a fellow sufferer is:

1) ensure proper diagnosis - make sure that the professionals treating you are solid in their diagnosis, as you know, our disease mimics inflammatory breast cancer clinically, but it does have distinct pathology result as I understand it, so although it is a disease of exclusion, there should be clear diagnosis of this disease, and exclusion of cancer - and that should provide you with some relief once you have that out of the way - your care team is so comprehensive I think you can rest easy knowing they have been so thorough in your examination and eventual firm diagnosis - this should provide some comfort, you can release that part of the equation to the professionals

2)  be gentle on yourself at this time...from my experience and what I can gather from reading about this disease, and from the other women on this site sharing their experience, each sufferer seems to have different disease experiences and treatments...so staying positive and assuming the best outcome will be yours, is I think extremely important - 'not knowing' is very hard for most people to handle but unfortunately the state of knowledge of this disease and treatment options are still experimental at best, this can be overwhelming and makes it hard to make informed decisions, I say gather the best medical team around you, along with your family and friends, and then try to have a measure of acceptance that you have a disease of unknown origin and treatment. I think this is very important and the earlier you do this the better - having such a rare disease is unusual,  you may very well be the first person your treating doctors have seen with this disease, (many of us are in this position, on this site), but having a disease that is not understood is not uncommon - many diseases are not well understood, so we unfortunately are not alone in this regard - anyway, I think stress worsens this disease, so try to avoid it - I see a medical social worker and have found this counselling extremely helpful, someone to talk to and discuss the experience of being diagnosed with a serious disease, is I have found, very, very therapeutic - you can only make the best decision you are able to, with the information you have at that time, and then release - no second-guessing yourself

3) line up a good rheumatologist on your team - if you do have a granumolatous breast disease, very likely you will at some point be prescribed either corticosteriod, or methotrexate drug therapy - generally rheumatologists are enlisted to oversee these treatments as they best understand these drugs - many theories hold that this disease is auto-immune in origin, so again, a good rheumatologist or immunologist is I think, very important, if you are lucky enough to have access to one - they probably won't have seen this disease before, so you can discuss treatment options together - again, important that you can find someone you trust - I have done the trying to be both expert and patient, and it is not very calming :)

4) you don't describe your symptoms, if you have been reading some of the posts here, I know you will come to understand that this disease has many courses - it can be anything from minimal and self-resolving (having one breast mass, which resolves on its own, with no treatment and no recurrence), to having a disease in which mastectomy provides relief and healing - so again, try to be positive about your outcome and if you do have some of the more distressing symptoms come up, the women here can help you, and offer advice on how to care for yourself

anyway, I think I am running on here

you have many positives on your side: your own medical knowledge as a nurse, a very strong care team and you have found us, and we are happy to support you here emotionally as you go through this experience

let us know how things go on Thursday, I understand this is where you will receive a definitive diagnosis

I can tell you that current standard treatment course may consist of the following (but, again this very much depends on state of your disease and symptoms, and overall health picture), but anyway generally:

- diagnosis
- either expectant management (do nothing and wait to see what happens) or
- local or wide excision and/or
- ************** - either moderate prednisone therapy either alone or combined with methotrexate - or methotrexate therapy alone
- mastectomy

we have women who have experienced all of these therapies on this site, as well as those practicing more alternative treatments and therapies, and we are happy to share our knowledge

thinking of you and wishing you healing,

Jo









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Hi Linty

Are you in the UK like me? - your experience of diagnosis sounds similiar to mine!....

I do remember being  also a bit shell-shocked and the first thing I also wanted was to understand more about what the disease is and what might happen next.  I wish this site had been around when I was diagnosed - as JoJo says there are a lot of people on this site who've had a wide range of experiences and so hopefully can help support you.

I concurr with everything JoJo says - one other UK specific thing I would add is that I was lucky enough to be diagnosed and cared for by a large, multidisciplinary breast unit at a good teaching hospital. Based on my mother's experience of (somewhat atypical) breast cancer at both the same hospital and another,smaller hospital this can make a big difference to your care. It sounds like your team are doing all the right things but as a "special" case you might want to consider a referral to a good teaching hospital if you're not at one already.

Good luck for today -  I had a very positive outcome - self resolving with no recurrence (so far!) so I wish that for you too!


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