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.
Okay, so it was the beginning of summer, I had just had my first miscarriage at right before 12 weeks. I was still stick to my stomach and eating more saltines than anything else. The nausea was worse in the evening, and I found myself more often than not going to bed around 6 in at attempt to avoid the worst of it. During the day I tried to get Lincoln out of the house as much as possible so Chris could work in peace, but our outings were limited to short trips to the library or park, or just on a walk outside.
We chalked it all up to the crazy hormones from being pregnant and miscarrying, but midway through July I suddenly made the discovery that a huge lump had popped up almost overnight in my left breast. Kind of unnerving, but both Chris and I thought it must be related to hormones like everything else. I emailed my doctor and got a request to come in ASAP to see a nurse practitioner who could check things out quickly. Within a week I was seen, and while the N.P. didn’t seem too concerned, due to the fact that it was so big so fast, she set me up with an appointment for an ultrasound two weeks later.
In the meantime, I was doing my own research to figure out what could be going on. The area at this point felt like back when I was nursing Lincoln and would occasionally get a clot, but this one just would not go away. I assumed I had some kind of abscess that had formed that just needed to be drained, possibly from somehow acquiring mastitis (the regular mastitis you get when nursing) post-pregnancy.
Chris was out of town when my ultrasound was scheduled, so my sister came with me to watch Lincoln while the doctors took me back. I hadn’t really been worried up until then, but this appointment was the turning point. I fully expected to be told it was a simple abscess, see through, smooth sides, everything I’d read about your average run of the mill cyst. I was secretly hoping they’d be able to just drain it then and there, and I had another hope that somehow all my nausea problems would go away with it, too. Instead I was told it was a solid mass with irregular edges and that I would need a biopsy right away. Neither doctor came right out and said anything, but I could tell what they were thinking after seeing my scan. I’d done enough research to know that those two characteristics were not good ones.
Over the next week I slowly started to lose it. I was terrified of the biopsy. I stupidly looked online for stories of women who’d had biopsies before and found some truly scary stories. Chris at this point was also starting to feel like things were getting serious, and knowing that even he was in that same frame of mind just fueled my fear. When we dropped off Lincoln with a friend for the day and headed downtown for my biopsy appointment, I was literally shaking. When the nurse came in to prep me, I started crying and she just gave me a big hug and said it was going to be okay.
Thankfully, the biopsy was not painful at all. (Another point for not reading stories online.) But again, the doctor’s demeanor didn’t do anything to tell me she thought it was something simple. She confirmed again that it was still a hard mass, and when I pressed for information on what it could be, she was only able to offer up a few possibilities, ones I’d already read about online and knew were not probable. What she wasn’t saying was pretty clear.
The biopsy was on a Thursday, the last full week of my summer vacation. Training week for teachers at my school started the following Wednesday. I had the rest of the week and the weekend to rest up from the biopsy, which really laid me flat with the residual bruised up feeling, and I was extra sick feeling in the days following.
That five day period was one I will never forget. At that point, I was convinced I had inflammatory breast cancer. It was the only thing that made sense from my research: it could come on suddenly with no warning, the mass was irregular and solid, which were hallmarks of cancer. It’s also a really fast moving disease. I remember silently crying for about three days straight. I laid in bed at night and cried, thinking about Lincoln growing up without me. I sat on the couch in the afternoon watching cartoons with my boys and cried, imagining what their life would be like if I wasn’t there anymore.
I was also desperately worrying about the upcoming school year. We were starting in two days and I was a hot mess. I didn’t know what my immediate future looked like anymore, and I felt like I needed to tell someone at that point. On Monday morning, I took Lincoln to school with me to talk to one of my good friends who’d recently become an admin. That talk ended up becoming a bigger talk with our principal and an utter breakdown on my part. I had lost all control over everything, and I had never before felt so unbelievably helpless.
The scenes from those few days will forever be etched in my memories. Even now the thought of that time still makes me well up, the way I felt my life was over at that point. And even though that’s not the way the story ends, I will never forget how that felt, to believe I might not be with my little family much longer.
On the following Tuesday, I received an email that there was a result update in my health portal. I was kind of stunned, because I couldn’t believe news like that could be passed on to a patient before a doctor had a chance to call and set an appointment. I couldn’t stand to read the results, so I passed the phone to Chris, who spent a full two minutes reading the whole thing before he said, “I only recognize a few of these words, but I know this one: benign.”
The diagnosis that came in from the biopsy was idiopathic granulomatous mastitis. Neither of us had ever heard of it, and from google searching, all we found out was that it was an uncommon condition that little was known about. I happened to have an appointment with my primary physician that afternoon for the first time since everything had started (she had been booked solid the whole month), and I couldn’t wait to get her take on everything and find out what the heck this was, and most importantly, how we were going to get rid of it.
She listened to the whole story, did an exam herself, and was utterly shocked at how big the mass was. She had never seen anything like that happen so quickly before, and unfortunately, she did not know anything about granulomatous mastitis either. Instead she set me up for a consult with a local breast surgeon who likely would have more information about the condition. Luckily the surgeon was able to see me just a week later. And so I began to prepare for both the beginning of the school year and the prospect of having surgery in the same few weeks.