As a mom of two toddlers, life in spring of 2008 was busy. I distinctly remember giving my older daughter, age four at the time, an “airplane ride.” As I lay on the ground and lifted her into the air with my legs, I experienced a sharp pain in my right upper thigh/groin area. I believed at the time that I pulled a muscle.
Fast forward a couple of months and the pain in that area was not improving so I decided to pursue an exam with my primary care physician. Despite my complaints, a physical palpation of the area was not done, and I was told to rest and take anti-inflammatories. As the summer went on, the pain was not improving. I was playing recreational sand volleyball and found that I was starting to experience episodes of leg weakness causing me to fall if I stepped the wrong way.
Still convinced I had an injury, I requested a referral to a sports medicine physician who, after speaking with me and checking range of motion, decided at the last minute to order an MRI. When I went in to get my results, I went alone because I was fully anticipating confirmation of an injury and a referral to physical therapy. Imagine my surprise when the physician entered the room and told me that they found a large mass in my leg and he and the radiologist were very concerned. Thankfully this orthopedic surgeon realized that this was out of his realm and referred me to a sarcoma specialist in a different local health system.
On my youngest daughter’s third birthday, a percutaneous biopsy confirmed the worst: it was a sarcoma, and an ultra-rare subtype at that. After determining that I had stage III high-grade Proximal-Type Epithelioid Sarcoma, treatment recommendations were made. Within days I had a double power-port placed and began chemotherapy. I was hospitalized for five days for each round of chemo, and being apart from my young daughters was incredibly difficult. After two rounds, the tumor was not responding as we would have hoped. My care team decided to stop chemo and moved directly to radiation. I received 25 radiation treatments total. My radiation therapists became such an important part of my cancer journey; seeing them every day gave me such a sense of normalcy and consistency. About six weeks after radiation ended, I endured an 8+ hour surgery to remove the tumor. The surgery went very well, and the tumor was able to be removed with clean margins.
Over the 10 years that followed, I strictly adhered to the surveillance recommendations of my medical team with regular follow-up scans. Despite the tendency of proximal-type epithelioid sarcoma to metastasize, I never experienced a single recurrence and remain cancer free today.