Brief Synopsis: I was diagnosed with a somewhat rare condition called idiopathic granulomatous mastitis in August 2018. Because of it’s rarity, there’s not a lot of helpful info on this crazy inflammatory disease on the internet, which was very frustrating when I got my diagnosis. Luckily I’ve managed to find a group of women who also experience this condition, and I’ve learned much more in the last five months. I’m writing down my experiences with GM online, not only to give others out there some real information about the disease, but also to keep track of all the details of my personal story in the hopes of figuring out the why of this disease for myself.
Part 1. Part 2. Part 3. Part 4. Part 5. Part 6.
So it was the twenty-somethingth of August. I was back to work after six weeks off summer break, in the middle of our annual teacher training week, gearing up for the start of the school year and my first surgeon consult that Thursday. Oh, and that giant mass that had taken over my breast had suddenly turned red, swollen, and tender in one area.
In the meantime I kept researching this ‘idiopathic granulomatous mastitis’ thing. Other than finding out that the idiopathic part just means that the cause was unknown, there was surprisingly little to find. There were a few very generic articles, but none told me anything I didn’t already know. (Although I did read one discussion that made the claim that IGM very closely mimics IBC– inflammatory breast cancer– which explained the reactions I got from the doctors at the ultrasound and biopsy. I later found out that a lot of women who are diagnosed with IGM are first mis-diagnosed with IBC.)
The frustrating thing was that there were no stories. Nobody was talking about it in the countless mom forums, no one was comparing their diagnosis to others or commenting on the brief articles with their own experiences. I was absolutely clueless as to what would happen. And unfortunately, new things were happening. The biopsy had been about a week previous, and the mass, which up until then had been mostly painless, was starting to make my skin swell and turn red. It felt like it was growing and pushing against my skin from the inside. I wondered if it was actually going to keep growing large enough to tear through the skin, and no matter what I searched online, nothing helpful came up.
One night I was scrolling through Facebook, and suddenly had the thought that maybe there was a searchable group for this condition. I found one quickly, but it had few members and hadn’t been updated in months. Disappointed, I tried typing out different names for the condition, and lo and behold, I found the group. It was a closed group, with about 400 members, and I could see that it was being updated regularly. I messaged the admin of the group and got accepted after explaining my recent diagnosis.
I spent the next week pouring over posts. Here was everything I had questions about. And not only that, I could ask new questions as I thought of them, and there were other women who shared their experiences with me. I finally learned what the disease was, what some of the treatments were, and most important what to expect from this giant mass.
As it turned out, it could grow big enough and eventually rupture my skin. It had happened to others many times. They explained to me exactly how granulomatous mastitis works: inflammation in the breast tissue causes hard lumps which grow and eventually some of it turns into an abscess (like a pocket of fluid). The abscess then gets angrier and more inflamed until it can be released. This could happen either by the skin rupturing and fluid slowly finding its way out, by seeing a doctor who could use a syringe to draw it out (if the fluid wasn’t too thick), or by having a surgery called an Incision & Drainage (I&D) to open the area up and clean it all out.
The bad news (or worse news, I suppose) was that this was likely not to be a one time occurrence. Granulomatous mastitis sufferers typically get to experience this over and over for about two years before entering remission. Some in the group have experienced it for far longer.
The other bad news was that a common thread in many women’s stories was that their doctors had no experience with GM. It’s so uncommon that most, like my primary physician, have never even heard of it. A lot of doctors are trying to figure things out as they go, along with the women who are diagnosed. There are a lot of ‘treatments’ that are being thrown around, though no official course of action can be agreed upon. The most common treatments are prescribing antibiotics or steroids for months on end, simply having the I&D surgery every time a flare up occurs, or ‘expectant management,’ i.e., don’t do anything and let it run its course.
Knowing all this, I went to my first surgeon consult with the understanding that I probably was not going to get answers, and may even find myself with a doctor who knew less than I now did about the condition. Dr. K seemed knowledgeable about granulomatous mastitis (he even said he had just finished up with a patient with it last week, which confused me since I now knew how rare it was), and told me he recommended an I&D to get things all fixed up. Since I was already in the abscess phase, he scheduled me for the next week, Friday morning, which happened to be the Friday of the first week of actual school. He felt that would be ideal, as I’d then have the weekend plus Monday (Labor Day) off work already to recover, so I could take less days off from school overall.
At this point I was pretty hesitant if this was the right decision or not. For one, I was worried I wouldn’t make it until the next Friday without the abscess rupturing on its own, which I’d read could be pretty painful and dramatic, especially the first time. I was nervous it would happen while I was teaching a class, since most of my time the next week would be spent at work.
Dr. K assured me it wouldn’t rupture before then. He also felt that after this instance was over, I was unlikely to need further treatment or have another flare up. These were all red flags to me with all that I’d read on the group page about others’ experiences with doctors who glossed over the condition as well. I began wondering if I should do the surgery on his advice after all, or if that would just aggravate the inflammation further.
Rather than the big burst I had been warned about, mine was simply a slow leak of watery fluid, one that I hadn’t even felt pulling my skin open, thankfully. I didn’t know how it would progress, but it was too late to call for a sub away, so I went off to my classroom as usual, but called Dr. K along the way to leave a message about the turn in events. He messaged me back during my 2nd mod to tell me he’d moved my surgery up to that afternoon, and to get my classes covered for the rest of the day and the next two. He wanted to make sure when he did the I&D that there would be enough of a sample to draw out and be sent for testing.
So with no warning to my brand new 8th graders, I left them in the middle of the day to go home and prep for surgery, which basically meant packing my bag and getting Lincoln squared away at a neighbor’s house. We arrived at the hospital around 3, checked in, and got brought back pretty quickly. They prepped me, started the IV, and before I could even start getting really nervous (this was my first ever surgery), I was wheeled in and asleep as soon as they put the mask on my face.
The surgery went well, I was told. I actually felt completely fine afterward, just a bit immobile on my top left side. They had me stay overnight, because there would be wound packing the next day (that’s a whole story in its own right) that they needed to show Chris how to do on his own. Dr. K came into the room at some point to go over some things, including how he had actually made two incisions in his attempt to drain everything. One was a long crescent moon cut on the upper left side, where the abscess had formed and naturally pushed open the skin, and the other was a much smaller line on the lower right where my biopsy had been. Apparently during the surgery he noticed my skin had also broken there and was pushing out more fluid.
The inflammation was still present, meaning the hard mass was still taking over most of the area, but the abscess had been thoroughly drained and cleaned out. Dr. K explained it would take awhile for the mass to break down fully, and not to worry that it was still there. Chris eventually left to for home to get Lincoln and put him to bed, and I settled in for a rather enjoyably quiet hospital evening with a new book on my Kindle. The last (and only) time I’d spent a night in the hospital, the first evening was spent in labor and the second was spent not sleeping at all because I was terrified to take my eyes off my newborn, and not eating anything they brought because I’d contracted a bacterial infection. I can’t lie, my night in the hospital this time was terrific compared to the previous visit. The only bummer was that I wasn’t allowed to lie down all the way to sleep– they wanted to make sure gravity helped keep everything clear.
The next day I was introduced to the wonderful process that is wound packing. More to come on that part of this whole granulomatous mastitis story soon.
Hi Jordan, it really broke my heart to read the first part of your GM journey. Thank you so much for sharing this. I hope you will continue to write about it, i would love to read more about your experience. And I love your style 🙂
Hi, hope you doing well. I’m having same condition. Can you pls send me any update of the treatment?
Hello! I have been working on the update for so long, but life keeps popping in unexpectedly. 🙂 Have you looked for the Facebook group? You will find SO MUCH info there. Search for groups with Granulomatous Mastitis in the title, it currently has 681 members. There’s another one that hasn’t been updated in years so don’t bother with that one. Hope to see you there!