My journey through Granulomatous Mastitis

February 14, 2020

I’ve been hesitant to share this for a few reasons, but it’s such a huge part of my story, and writing is therapeutic for me. Also, if you Google this topic, you won’t find much besides besides medical journals. Maybe my experience will help other women.

In April of 2017, almost 2 years after I had Davis, I found 2 lumps in my breast. After a breast and lymph node biopsy, I was diagnosed with Granulomatous Mastitis and Rhodoccocus (still a mystery)—both very rare conditions—so treatments were trial and error. I spent months on oral steroids, antibiotics, heavy narcotics, seeing a breast specialist, an infectious disease doctor, and a rheumatologist. I had intense pain, bursting abscesses and bandages every single day, and I couldn’t pick up or even truly hug Davis for months.

I had started a new full-time job about 3 months after my diagnosis, and there were days I’d get dressed for work and simply could do nothing but lie back down.

To say it was hard was an understatement.

My condition went into remission around April of 2018, but there was so much internal scar tissue left from the multiple steroid injections and aspiration procedures, so the pain has still been extreme almost daily.

I saw another gaggle of plastic surgeons, who were very hesitant—and one who outright refused—to do anything about removing the scar tissue. Several women have opted for mastectomies, and others have been advised to just leave it alone for fear of a flare-up. One of my doctors admittedly just learned about this condition, and said that he’s excited to help me because “this has destroyed people’s lives.” Hearing that was so comforting because it validated my feelings and my experience. It’s not cancer, but it’s been truly devastating. My former breast specialist (who moved out of the state in May of 2018 and had my ugly cry on full display in the exam room) told us that my case is the second worst she’d seen.

I felt like I tried everything. It was recommended that I try flooding my body/immune system with greens, so I started juicing and trying to drink 64 ounces every day. With that same goal in mind, it was also recommended that I start intravenous vitamin therapy. I can’t even count how many sessions I went through. If nothing else, it was relaxing, but I honestly can’t say one way or the other if all of this actually helped, or if the disease just ran its course.

But what I can say is that this has truly been the most difficult time of my life. It’s been hard, it’s been lonely, it’s been sad. I could go on forever with a long list of adjectives, but looking back at this picture of my “Prednisone face,” I always:

• Hear the voice of one of my dearest friends: “Well, at least you know what you’d look like 100 pounds heavier!” ?
• Realize my strength

So yesterday, my wonderful and brave doctors performed surgery to remove scar tissue and reduce both breasts, and I’m doing 4 sessions of radiation for the scarring. The first session followed surgery yesterday, and I have another session today.

I have had an unbelievable support system through all of this. It’s truly had me in tears. Lebrean is an absolute saint, Davis is so remarkable, and my family is simply the best! I am beyond grateful.?