From Business Trip To Battling A Rare Breast Disease: My Journey Of Survival, Advocacy, And Remissio

I never envisioned a business trip could result in a diagnosis of a rare, under-practiced, poorly understood, and emerging chronic inflammatory breast disease affecting 2.4 women per 100,000 and growing. Two months after my return from that business trip, I started experiencing a multitude of symptoms, including breast pain. During a self-breast exam, I discovered a lump. Wasting no time, I called my primary care physician, who ordered both a mammogram and an ultrasound. Unknowingly, my mammogram was classified as BI-RADS 5, highly suspicious for malignancy. I would later understand why my primary care physician requested an appointment with a surgical breast oncologist before the scheduled ultrasound-guided core needle biopsy. However, it was a conversation with the radiologist on the day of the biopsy that truly motivated me for what was to come. He believed that while my result could be cancer, he did not think that was my destiny. He did indicate the presence of chronic inflammation and advised me to find out the cause.

I was told I had granulomatous mastitis (GM). Relieved that it wasn’t cancer, I could never have imagined how this breast disease would soon reveal itself like the monster it was. Six months later, through my own research and advocacy, we would discover the actual cause of this condition. The species-level gene sequencing pathology test I uncovered ultimately helped save my life. Luckily, I had an amazing partner-approach surgical breast oncologist who, without hesitation, ordered that test after I brought it to her attention. I also had a functional medicine practitioner who joined our team.

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My journey was exhausting and traumatic. Imagine your breast developing large, painful abscesses that would leak both blood and pus-like fluid. It was as awful as it sounds. The daily wound care was relentless. My support group, family, friends, and boyfriend were so wonderful and understanding. Not many individuals from my inner circle could fully begin to understand what women endure through this disease. I never expected what I would then begin to go through on my quest to find out how I contracted this disease to begin with.

The pathology test resulted in the identification of an environmentally originated bacteria associated mostly with water, sewer, and soil. I was grateful to know there was an organism to treat. However, my next mission was to find out how I contracted this bacteria known as Corynebacterium kroppenstedtii. I traced my steps like a diagnosis detective, attempting to identify where in the world I could have been or what I could have done to have exposed myself to this bacteria. After exhausting all opportunities, the only thought I had was the shower. I had the water at my own home tested, which came back negative. Then, I thought back to a professional I was conversing with on that business trip who had actually contracted an infection through his ankle. Through the process of elimination and other suspicious circumstances of that trip, both I and my medical team believed I contracted the bacteria from the hotel shower. I wasn’t like Erin Brockovich Jr., rushing back to that area and collecting water samples, but it is likely that the trip was responsible for leaving me with two permanent scars that I now call warrior wounds.

I had to undergo breast surgery, nine months of antibiotics, and had a wound VAC for many weeks to eliminate the infection and cure my GM. Honestly, the worst part was the wound VAC. Not everyone is lucky enough to cure their disease, but I feel I’ve personally made strides to give a voice to GM in particular. My advocacy includes several media interviews where I shared my story, some of which were alongside my specialist. I was invited to be the keynote speaker for The 2021 Universe Conference of Breast Pathology and Breast Cancer, where I shared my story and research with doctors, specialists, and pathologists from all over the world. I also hosted a “GM 101” for other women from around the world who have been affected by this disease. I was interviewed by The New York Times to contribute to a story on medical gaslighting they published on July 29, 2022.

Most valuable was the book I published, titled Diagnosis Detective: Curing Granulomatous Mastitis, which launched on Amazon. My book shares my elaborate journey toward not only creating a voice for this disease but also helping other women who may be suffering or specialists hoping for direction. My own surgical breast oncologist, Dr. Kelly McLean of The Christ Hospital Network in Cincinnati, OH, supports this, as mentioned in the quote she shares in my book: “Tami did a lot of research to educate herself about her disease and the treatments. With my busy clinic load, I never could have put in the time and effort that she dedicated to finding answers. It sounds cliché, however, what I learned from helping Tami, I now carry forward to other patients with more confidence and insight into the disease process than I had prior to knowing her. I couldn’t have helped her if I hadn’t worked with her. I learned an immense amount from her.”

They say God gives his biggest battles to his strongest soldiers, and I’m left with those two warrior wounds reminding me of what I not only survived but also to keep being the voice for the disease that doesn’t necessarily have to have the same traumatic outcomes for others. I developed my own “A+ List to Advocacy”: act, assemble, ask, acquire, and apply. Act on educating yourself and executing a plan. Assemble your team of trusted doctors. Ask your doctor questions and speak up for yourself. Acquire and establish your support team. Apply your intuition and be persistent.

I have now been in remission from GM for about five years. I’m hopeful that my GM will remain in remission, just as I’m hopeful that sharing this information may help someone who needs it.

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