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granulomatous mastitis User Group
A losing battle
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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A losing battle

I guess that it's time I write in instead of just reading everyone's posts.  I am 32 years old, I have a 4 year old, I did breast feed exclusively for the first 5 months (well I pumped, she was a premie and was not able to latch on), and I do have hyperprolactemia due to a microadenoma on my pituitary which I take cabergoline for.  I have been battling IGM since Sept of 2010.  It took two months of suffering to my left breast, 7 different antibiotics, hospitalization, incision and drainage, wound vac, and appr 6-10 abcesses that spontaneously burst on their own before I was diagnosed.

By the time I was diagnosed things seemed to calm down, however by the spring when none of my wounds had healed and new abscesses were occasionally appearing and bursting I changed docs and decided to go on prednisone.  My doc had never treated anyone with this however is voted #1 breast specialist in the state and has done research and reached out to other docs who have seen patients with this.  Anyways, within a week on prednisone all wounds were healed, yay no more bandages going into the summer!  I did a 9 week taper and all was good...  

Until August came, about one month off the prednisone, I felt a familiar feeling however this time in my right breast.  Immediately went back on the prednisone however things got worse after being on for about  a month, tried long term antibiotics with no difference made, and here I am now.  Off any meds to supposedly "help" the disease because what's the point, nothing helps.  I just take ibuprofen or 1/2 a percocet when I need it which is daily.  

I am tired all the time, this exhaustion that can't be described but I know that you all understand.  Yes, I am depressed, situational, however as my doc said this is a situation that isn't going away, so I have decided to discuss going on an antidepressant.  Pain is daily, the intensity does vary, I have wounds that are in all different stages of the healing process on my right breast and my left breast has 12 scars on it.  I do work 4 days a week and am able to be productive and energetic while I'm there, however I feel like I am conserving all my energy for 4 days of work, not a way to live a life.  I am cranky and short tempered from the constant pain, fatigue, and anger over the disease.  Wow, good thing that this isn't an add for a dating service!  What a catch I would make, LOL!  I have a supportive husband however even that is strained, the intimacy is gone, I can't look at myself in the mirror without being repulsed by what I see, he says he doesn't care but I just think he's crazy.  

I always said that I would not loose my breasts to this disease however I am to that point where I see no other choice. I cannot keep on like this.  What I want to know is if it all goes away post a complete mastectomy, I want every last bit of breast tissue removed, I want no remeberance of this disease left in me.  I would appreciate the feedback from anyone, especially if anyone reading this has done the complete mastectomy.  Hands are up, white flag being waved, I am done fighting this disease and just want to get rid of it and move on with my life.
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19 Comments
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Hi there -

I can completely relate to all you have described, for what small measure of comfort that may provide you with.  Your reaction to this horrible disease process is pretty much what we have all expressed to some extent.

I was completely ready for mastectomy, discussed with surgeon, however they felt it would not necessarily cure me.

I am now permanently disabled with spinal inflammation, no energy, breast and left sided pain....lots of great stuff that takes most of my quality of life.

A large number of our members have elected for double mastectomy and have written after that they were very happy to have made this choice.  I hope they do respond to you so you are able to make as well informed decision as possible...

White wishes for healing...JoJo
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First I just want to say u are stronger than u think u are look at what u are going through still working and being a mom and wife its not easy so I hope u realize your own strength.  I too am a mom of a 4 year old and as a single mom I have to work full time so I understand the constant exhaustion.  Its frustrating when u want to spend time with your child and be active when all u want is to lay in bed from using ur energy to work all week. The depression is normal and its ok to ask for help my doc says we are experiencing grief and mourning our idea of our breast. As for the treatment its a long tough road and no easy answers so look at all options including mastectomy.  I got to the white flag moment too after months of draining and abscess and antibiotics and multiple tests and docs. Finally through some research and conversation we decided to try methotrexate and prednisone combo. I tookr both for 4 months then upped methotrexate and dosed off prednisone slowly.  Now I just take methotrexate its not a cure but the improvement is awesome.  I still have some pain and muscle spasms but nothing has opened up or needed drained since the end of October 2011! For me its helping but its not for everyone and a serious drug to be on but may be worth considering.  My breast  feel more normal and despite still feeling fatigue the quality of life is so improved! Its your decision thoroughly just look at all your options. You are in my thoughts and prayers.  Try to keep your head up u are a strong amazing woman.
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Avatar_f_tn
Thank you so much for your kind words.  No one except for the very limited group of us truly understands all that this disease takes away from a woman, her children, spouse, ect.  I don't know how you manage to take care of everything being a single mom, I hope that you have a good support system.  I gave serious consideration to MTX but I just don't want to go on it.  It is such a strong drug and I'm just done trying things that just don't seem to work.  And if it does work than what does it mean for me, I have to be on this strong medication for years to come?  Also, you say you still feel the fatigue, at this point I am almost more bothered by the fatigue than the pain because that is what is standing in the way more of me living the life that I used to.  Right now I am trying to mentally prepare myself for life after the mastectomy and before reconstruction.  It does finally give me some hope though to see an end in sight and a normal life again.  I hope that you are doing well and getting better everyday.
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Avatar_f_tn
I just wanted to thank you for doing so much within this support system, you obviously have helped many people through your words and effort.  Is there anything more at this point that you can do for yourself, you sounded so defeated in your reply, it breaks my heart, your strength has always come out through your words.  Would mastectomy be an option now?  You had said that docs told you they didn't know if it would cure you,  no one "knows," but what I know is that if you have no breast tissue left in you and use none of your own tissue to reconstruct than what is left for this disease to attack? Atleast this is what I'm banking on.  I wish you all the best.
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I'm so sorry you're going through this.  After 3+ years of sickness, explosions and debilitation, I had a bilateral mastectome in Nov 2010. I opted to not have any reconstruction done at all. Since the surgery I have had no problems, and am doing very well. Please feel free to email me if you have any questions and I'll help you however I can.

Hang in there. While some have had relief with medications, I can only tell you that there is life after mastectomy, and it's not the end of the world or the end of femininity.  I'm praying for you all.

Leane
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Avatar_f_tn
Thank you for your kind words and caring.

I think I am ok with the disease.

Fighting an employer that laid me off the same week I was having spinal biopsy, after trying to work through three years of battling GM, anyway fighting for access to my insurance benefits and otherwise for my rights, for two years now, while I have been reduced to welfare, have had to stop the majority of my helpful therapies...unfortunately I am struggling in many areas.

But I am strong, as are most of you.  I intend to win my Human Rights case, I intend to win my insurance benefits for which I was paying the contract for many years.  I intend to be well again.

So...may be down but not out!

You are strong too as are all of the ladies and their families, fighting this awful illness.

I am intent to get well enough to work again, so that I can focus on getting some progress in care, and conquering GM.

Ha ha - guess my ego still lives.

Cheers to all
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Avatar_f_tn
I'm sorry. It would be nice if I could sit here and read and read but I'm working and have questions. I wish there was a good doctor with all of the knowledge needed to know about this, is there?
What popped into my head yesterday was; where does the lump go when it gets smaller and isn't leaking? I still have a lump in my left breast but is a lot smaller and flater since aug/11 but still hard. I'm wondering if this is absorbing back in my body if whatever it is is making me sick or tired when going into my system. I'm tired a lot and do find myself trying to "conserve" my energy, as well. I'm a very busy single mom who works full time during the day and before and after work as well. I depend on my legs to get me to work and these days I find, I become very tired after 20 min's of walking and I'm someone who likes to exercise and I can't even do something I love for very long. I don't know what to do, I'm frustrated. If I could, I'd stay home full-time, take care of my kids only and get well, but I can't!
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My question for you was; the spinal inflammation.. this feels like back aches? I've had odd on-going back aches since apr/10. This was the beginning of not feeling well for me. I then had a breast infection shortly after this but went away within a week. Before this, I had only had breast infections while breastfeeding my kids. A year later in july/11, on the same spot same breast this "breast infection" appeard, then the lump. My backache is in my lower lower back, on-going since 2010.. would this be spinal inflammation for IGM?
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I got a double mastectomy on Jan. 19, 2012.  I am scheduled to get expanders put in on May 15.  
But I think the IGM is coming back.  I feel that awful pain again.  I am so depressed, I can't believe I got the surgery and this could happen again.
I have not called my doctors yet to see if it has indeed returned.  I hope that this is all in my mind...but I think it is truly happening.
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OMG, I havn't scheduled my mastectomy yet but I'm in the process of it all and I'm trying so hard to be positive and see this as my cure.  Question, did you get a total mastectomy or did you keep some breast tissue.  Anxious for an answer because it could change my whole gameplan.
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I'm so sorry you're going through this, and I hope it isn't what you think it is.

To cmbabys: One of the things my doctor was very explicit about was that he would take ALL breast tissue, making sure to "plane" it down as far as possible, without killing the skin. He left the lymph nodes, but took everything else out. From my lower ribs to my upper chest and even partly around my sides is gone. He did such a good job of "planing" that my skin got stuck to the bone in places because of swelling & inflammation and I had to force myself to keep massaging it to "un-stick" it (gently!). It did hurt, but in the end it all worked out fine.   I think this is one of the most important things to stress to the surgeon--Make sure you get it ALL!

I have had no problems with IGM since the bilateral mastectomy on Nov.1, 2010.

Blessings,
Leane
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I got a total mastectomy on both sides, but it was a skin-saving mastectomy.  One thing I wonder about is, that they removed the drains after only 4 days.  this was the idea of the plastic surgeon - she thought the fluid staying inside would make it easier to put in the expanders later.
My surgeon had never done that before.  I hated those drains and was pretty happy to have them taken out, but I wonder if that has contributed to my feelings that this is coming back.
I did call my doctors about getting tests or something to see if the IGM has returned.  They were going to consult and get back to me today.  So I will let you know more later.
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Oh, those drains!

I think they were the worst part of the whole thing, and I can tell you that I'm STILL sore from them, 1 1/2 yrs. later!  Mine don't hurt up high, where they were put in, but they do still hurt lower, down towards the bottom of my rib cage.  Those wretched things are long!  Also, it took a really long time for all the fluid to dissipate--like a few months--so the swelling added to the discomfort. (I actually asked my surgeon if maybe he accidentally dropped his dentures in there & forgot to take them out before closing up. LOL!)

It would not surprise me one bit if that's what you're feeling. Hopefully this may ease your fears a little, until you can find out for sure.

Hoping the best for you,
Leane
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Avatar_m_tn
Hello:
   I am sorry that you are going through this but,  know that you have the support here.   I am on anti-depressants and that seems to help a lot.  Being outside now that the weather is nicer is also a great boast.  I allow myself the pleasure of a long afternoon nap in fact,  my family insist that I take one (I have no small children).  I wonder if I get cranky if I don't nap...hmmmm maybe that's why they insist on my nap.  lol
  I had my left breast removed in Nov, 2008 and my right in May 2009.  My left side has cleared up completely but, I still have two holes that are being packed daily.  The holes are the result of abscesses prior to January.   I am allergic to every antibiotic going so, long term treatment isn't an option.   In January,  I was started on IV gamma gobulin,  I receive this treatment once a month.   The idea is to add new antibodies to help boost  my own compromised system.    For about 2-3 weeks after the IV I feel wonderful,  more energy,   no tenderness and as a bonus it also helps with sinusitis and bronchiatis.   I think that it's making a difference although I do have one wound that tunnels about 7 cm.    Gamma Gobulin infusion is expensive, fortunately,  I don't have to pay for it.  Canadian Blood services pays for blood products and our provincial health plan covers the day spent at the hospital having the IV therapy.  
   My treatments will be for 6-12 months and I am happy to be a guinea pig in this type of treatment as the prednisone and low dose chemo medication combo is not an option for me.
  I will lkeep you posted.
  Pat
    
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Pat,
My heart and prayers go out to you. I know your post was several months ago, but I still wanted to reply. I have a facebook page I would like to invite you to:
https://www.facebook.com/groups/151620904858565/

I don't have many members and it is fairly quiet, but I am always here for fellow GM friends. Support in kind words, understanding, prayers and in pursuit of as much information as I can on GM. You may also find an article from on one the members hopeful. Her name is Ann. She is optimistic and someone who has been through the rough times, as you. She share her story of her mastectomy in it.
http://theeclecticwriter.typepad.com/press_pause_moments/2011/10/self-awareness-after-breast-reconstruction.html
Feel free to join or just contact me via message or FB friends.

In hopes you are doing well,
Candace Smith
https://www.facebook.com/yblendn
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Hello,

I was just wondering if you're still planning on having a mastectomy? Do you live in the US?

I also have GM, just not as severe as some of the other women on here (hopefully it's maintained for the most part). Fortunately, last year when I discovered a lump, I had a mammogram and biopsy, it was diagnosed right away and I began to look for answers when doctors in my city didn't even know what kind of doctor I should see for treatment. I found this forum and saw that some women had mentioned a doctor that has seen and treated a number of GM cases. I am also very fortunate in that my husband flew me out to see the doctor last year and I have returned a year later to have another evaluation and talk more about treatment plans. I have had success in treatment, although it hasn't gone away completely. I trust the doctor and she is very competent, qualified, kind & knowledgeable.

All this to say, mastectomy is so final and severe--although I know for some women it is their only relief or hope for a cure. Would you consider seeing a doctor who has seen and treated about 20 patients with GM in her lifetime? I read a statistic that in 2009 there were 200 cases of GM reported in the entire world. That means this doctor has seen roughly 10% of them. I think those odds are as good as it gets with this mysterious, obscure disease.

If you (or any other women out there reading my response) are interested, I will be happy to give you the doctor's information. It just seems like it might be a good idea to get one more expert opinion before such finality?

Best of luck,

Kristie
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I'm glad that the treatment you are doing worked for you.  I would like to know what the treatment method was.   As for me, I live in R.I. and my MD is someone who never treated IGM but was voted the #1 best breast specialist in the state by renowned sources multiple times, she researched all she could once I became her pt.  If the Dr. you saw is Dr. Laya, I know she has become the "big name" in this, my doc has spoken to her, has her personal # on her cell because of all this, and her treatment method is not an option for me.  I saw the MD at Brigham and Women's hospital in Boston who sees patients with IGM (all though in her 15 years has only had 4 pt's in the whole northeast area who have had it and come to her) and at Mass General I saw the doc there who sees women with this, and again in the last 20 years has only treated 4-5 women with this.  Those two hospitals are basically the leading medical centers in the entire northeast, so I have had may share of expert opinions.

I understand that mastectomy is something so hard to grasp for women who havn't suffered the severity that some of us had, and you are lucky for that, trust me.  It is an extreme decision, but one that when I came to it and accepted it, it really was the only logical decision to make, I was taking control and getting my life back.  

That being said, while in the process of planning for it, all of a sudden my breast got better, almost overnight, and began to heal, on it's own for no reason other than this disease has no rhyme or reason!  That improvement began 2 months ago and I was fist cautiously optimistic of a normal life again, than I let go of some of the caution and began to feel like a normal human being again.  Sad to say though that as of about a week, this rotton disease might be making a resurgence, not quite sure if it is just a couple areas in the breasts that are making a final "hoorah" or if it is going to take over my breasts and my life again.  Unfortunately the only factor in this is time.  

So you can see how those women who have gone through mastectomy and healed have the power, they beat this thing; me, I have to just wait and see, I am powerless in this situation, I have no peace of mind.  For the most afflicted, mastectomy is not only a treatment option but  peace of mind.
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Hi all:

So sorry I have been so quiet.

The stress of my human rights case against my employer (now 2 years and 3 months ongoing; is going to trial this July), and the attendant processes and requirements, on top of my pain and constant doctor appointments and living off of government disability, has put me in to pretty severe depression.  I am now also having to launch a separate lawsuit against the insurer of my employer for long term disability (I was laid off the week of a spinal biopsy, after enduring almost three years of gm and all that goes with that)...anyway I have been trying to hold it together through all of this, but can't help but feel betrayed and defeated at times.

So a late answer to cmh1277 - yes my pain is in my lower back, I have disc degeneration at L5-S1, and L4 and also now seems to be progressing with some thoracic disc involvement.  The inflammation evident on MRIs and CT scans around these areas is very extensive...so much so that they initially thought I might also have a spinal infection or cancer in this area.  Luckily, I do not, however they can't seem to explain this inflammation.  It came after the GM.  

I also have much pain in my right hip, knees, etc. -  my whole body hurts.  I am on Cymbalta for the depression and also to help with the pain.  I also take Oxyneo, a powerful painkiller.  And, when I can afford it, Norflex, which is a muscle relaxant, which also helps with my pain.

I say helps as my pain is still constant.

I also use a deep muscle stimulation machine for my back.  And try to follow light yoga and walking as I can to maintain strength and range of motion.

My fatigue is as others describe, overwhelming, and not relieved by rest.  

My body has never felt right since GM.

I don't want this post to be discouraging to others, however I believe it is important to be truthful.  I don't think that joint pain and chronic fatigue were previously (or may even now), be associated with GM, but from our community, it would seem they should be.

As I lie here and write (can't sit), my left breast is aching.  My breast aches on and off, sometimes pretty severely, even through the pain meds...don't have active GM, but there is 'scar tissue' (don't really believe that is what it is), in my breast and constant aches on that whole left side of my body - I always had a lot of radiant pain from my GM breast side - all up my neck, in my back, and down my arm.  It continues.

I do not feel that the GM (whatever the heck it is), has left my body.

I don't know if a mastectomy would have given me a different outcome.  I do know I feel I may have been too conservative in treatment in hindsight, as I am now functioning at about 10% of what I did previous to this awful disease.

Many women move on from GM, without seeming to have any lasting effects on their overall health.  Clearly others, like me, and some of my friends here...do not.

I pray that someone figures this thing out and saves us from future pain, and  allows for effective early treatment for other women as they are diagnosed.

I think of you all often and hope the best for us all.

JoJo
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Avatar_m_tn
I don't understand how these business people can treat their employees like you have been treated.   I'll keep my fingers crossed that the outcome of your human rights case is the right one and that your lawsuit against the insurance company is sucessful.  I know that the depression part is debiliating.   I hope that you know how much you have helped people with this forum.  
  May God bless you as you continue with your struggles.
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