Patients & Care Partners

I was always an active person. I grew up in a smaller town by a river, spending time outside with family biking, walking to the beach, and even running 5Ks. This active lifestyle extended into my love of travel – hiking along the North Shore of Lake Superior, spending weeks in Maui with my grandparents, and exploring in Ireland, England, Spain, and Japan. Looking back, I find myself grateful for those experiences, because I would later need that adventurous attitude when diagnosed with TGCT. 

In the spring of 2018, my knee started to bother me with pain and swelling. I assumed I had injured myself and it would improve over time. That summer, I traveled with my family to London. We spent a lot of time walking and I wore a brace because my knee hadn’t gotten any better, and after getting home it became worse.

Even as my pain and swelling increased, I kept trying to manage my symptoms until one day the knee was so swollen I couldn’t pull jeans over it or bend enough to clip my own toenails. That’s when I knew something was wrong. 

I decided to make a doctor’s appointment. An X-ray suggested arthritis, but the orthopedist thought it might be Lyme disease or gout instead. To help manage the swelling and investigate further, they drained fluid from my knee through a procedure called aspiration, but within days the swelling came back. When tests still didn’t provide answers, my doctors ordered an MRI. 

I received a call the day before Thanksgiving: “You have something called PVNS,” now known as TGCT. Although reassured it was benign, I freaked out. All I could tell my husband was, “I have a tumor.” 

After the holiday, I learned I had diffuse TGCT requiring specialized surgery. With my mom by my side, we did research to help make educated decisions, find expert care, and build a trusted partnership with my care team. I underwent surgery in February 2019. Complications caused foot drop, leading to nine months of physical therapy.

In February 2020, imaging showed persistent disease, leading to a second surgery that summer. Six months later, tumors remained and I faced another decision – surgery or medication. 

I worked with my healthcare team to find a solution that is working for me for the time being, and seems to be keeping my tumors stable, though it’s not a cure.

As I take this metaphorical walk through my journey with TGCT, I have had to accept my limitations – managing muscle atrophy, avoiding high-impact activities, and not always being able to keep up physically. I have learned the importance of advocacy, staying informed, and working with my care team to make thoughtful decisions. 

While I can’t do all the walking I used to, I still make the most of what I can – pushing forward on good days and resting when needed. I remain hopeful for a future where everyone with TGCT can adventure pain-free and thrive in doing what they love.