Type of Sarcoma: Undifferentiated Pleomorphic Sarcoma (UPS)
Date of Diagnosis: 2014
Location: gluteus maximus
I was at work when the surgeon called with my biopsy results. “Undifferentiated pleomorphic sarcoma,” he said. “Could you repeat that?” I said, quickly dumping the contents of my purse to find a pen. “UPS,” he said, “high-grade,” which meant aggressive. Why wasn’t I prepared? I knew this call would come. A week earlier an MRI revealed a 15-cm tumor deep in my gluteus maximus muscle “worrisome for high-grade soft tissue sarcoma.” What was UPS? The MRI report said, “leiomyosarcoma.” I was intimidated and defeated. I hung up and turned to my online medical records and Google. The answer was sobering.
Deep-seated sarcoma tumors are often missed or misdiagnosed, and mine was no exception. I was healthy with no pain. I walked two hours a day. The only hint something was amiss was numbness and tingling in my right thigh. I was content to receive months of treatment for “sciatica” and “piriformis syndrome” despite worsening symptoms. Now I’d learned my lesson. I might be scared, but I had to act with courage. I requested a CT/PET scan and got it that same week. I was empowered. Then humbled: the scan revealed lung nodules “of concern” for sarcoma.
I was terrified; I felt haunted by gremlins. Googling “sarcoma” was no longer helping me. I decided to place my trust in sarcoma specialists, do what they advised, and stay off the internet. Minnesota has two high-volume sarcoma centers, and I got opinions and received outstanding care from both. Video-assisted thoracic surgery (VATS) revealed my lung nodules were not sarcoma. My luck was stage 3 UPS. I got chemotherapy at the University of Minnesota followed by radiation and surgery at Mayo Clinic.
With a sarcoma team in place, I began to learn how to enjoy life despite treatment side-effects and survival statistics. I practiced mindfulness meditation and read that it’s possible to enjoy life despite suffering. Promising! Family, friends, Gilda’s Club Twin Cities, Rein in Sarcoma, my medical team, and mindfulness meditation became my life raft. I’m grateful beyond words to my loving husband, David, who’s been my caregiver throughout and to my amazing sarcoma team: Keith Skubitz, Steven Robinson, Franklin Sim, Nho (Bill) Tran, Jean Stahl, Scott Stafford, Susan Klein, and to palliative care, wound specialists, and physical therapists who helped along the way. Trust well-placed.
Now 34 months NED (no evidence of disease), I’m curious about sarcoma. Research experience and a decade teaching research methods help me interpret sarcoma research. I share my experiences and what I learn from research articles with others. I celebrate when friends get good news and grieve when they don’t—and I still get scared. Mindfulness meditation helps me face whatever life brings.
LYNN VON KORFF