Joe F., a fitness enthusiast from Brighton, MI, shares his journey of being diagnosed with a rare and aggressive cancer, desmoplastic small round cell tumors (DSRCT), a type of soft tissue sarcoma. Only around 200 cases of this kind of cancer have been reported worldwide since its discovery in 1989.

Joe’s story begins with mild abdominal pain and fatigue that led him to seek medical advice, only to discover through a CT scan that he had multiple tumors in his abdomen and pelvis. This shocking diagnosis came as a blow, especially considering Joe’s dedication to a healthy lifestyle for over 22 years.

Initially, Joe’s doctors misdiagnosed his illness as small cell carcinoma, a type of lung cancer, which led him to seek a second opinion at MD Anderson. However, the oncologist there discovered that the primary tumor was not in his lungs after all. A clinical trial doctor at MD Anderson re-evaluated his biopsy results, diagnosing him with DSRCT.

Joe’s treatment journey was grueling, involving 6 cycles of aggressive chemotherapy–vincristine, doxorubicin and ifosfamide. Despite the challenges, including severe side effects like debilitating bone pain, Joe’s physical fitness allowed him to endure the rigorous treatment regimen. After completing chemotherapy, Joe faced another hurdle when he found out that all the specialized surgeons at MD Anderson had retired. He sought out Dr. Lilja at Memorial Sloan Kettering Cancer Center, a leading surgeon for this type of rare cancer.

Joe’s surgery was divided into 2 intense procedures, each lasting about 10 hours. The first surgery involved removing tumors, lymph nodes, his spleen, part of his diaphragm, and the omentum, which is a layer of fat that holds organs in place. Remarkably, Joe was up and walking within 24 hours post-surgery, demonstrating his resilience. After a short recovery, Joe underwent a second surgery to remove more lymph nodes and tumors from his pelvis, which concluded with the oncologists declaring him in remission.

Despite this positive news, Joe remained cautious, knowing the aggressive nature of DSRCT. To minimize the risk of recurrence, he opted for 2 additional cycles of chemotherapy, followed by whole abdominal radiation. Radiation therapy proved to be another significant challenge, causing extreme fatigue and severe side effects that sometimes led him to question his ability to continue.

Recently, a scan discovered that Joe’s cancer had recurred in 2 lymph nodes in his neck. He has resumed chemotherapy and will likely be on chemo for an extended period.

Joe’s experience highlights the unpredictability and severity of cancer. His story is a testament to the importance of perseverance, a strong support system, and the will to fight through the toughest of battles. Joe continues to face the physical and mental toll of his treatments, but his commitment to overcoming this rare and aggressive cancer remains unwavering.