Helping Patients with Rare Tumors: Solange Sierra’s Journey

When Solange Sierra, APRN, was finally diagnosed with having a tenosynovial giant cell tumor (TGCT) — a rare, non-malignant tumor affecting joints and tendons — she had already endured years of undiagnosed leg pain. Now an oncology nurse practitioner at Sylvester Comprehensive Cancer Center, part of the University of Miami Health System, she channels her own experience to help patients with sarcoma, another rare and often elusive tumor.

“I know firsthand the frustration of navigating a rare tumor diagnosis,” says Sierra. “I am grateful to be able to share my story with patients and reassure them they are finally in a place that will provide the comprehensive care they need.”

Living with undiagnosed pain

When Sierra’s leg pain began in her teens, she dismissed it as a sports injury. Years later, the pain worsened, and she sought answers from an orthopedist. Unfortunately, an MRI was inconclusive, and her doctor advised her to “live with the pain.” 

“Believing I had no other option, I managed the pain with Tylenol, stopped exercising, and focused on my dream of becoming a nurse,” says Sierra. “In hindsight, I wish I had pressed harder for answers.”

Pursuing a diagnosis

After earning a bachelor’s and master’s degree in nursing from the University of Miami’s School of Nursing and Health Studies in 2014, she noticed a lump on her leg. This time, with a deeper understanding of medicine, she pursued a diagnosis and learned she had TGCT. Fortunately, her tumor was operable and successfully removed. 

“For the first time in six years, I was pain-free,” says Sierra. “I was so fortunate to have an excellent team of multidisciplinary experts at UM that were able to diagnose and treat my tumor.”

Drawing on her experience to help others

Today, Sierra works alongside her own oncologist, Gina D’Amato, M.D., assistant director of clinical research at Sylvester, who cares for both sarcoma and TGCT patients and works closely with laboratory researchers to conduct translational research on a large portfolio of clinical trials.

Sierra draws on her experience with Dr. D’Amato, as well as her own personal journey, to help patients ask the right questions and access the care that will enhance their quality of life. 

Sarcomas are rare and misdiagnosed.

Sarcomas, like TGCT, are extremely rare and frequently misdiagnosed. They develop in soft tissues and bones, typically in the extremities or the abdomen. With more than 170 types, these rare tumors make up about 1% of all cancers, with Sylvester seeing approximately 10% of these cases.

With a lack of awareness among both patients and health care providers, many patients go undiagnosed for long periods, mistaking a non-painful lump or a bump on the arm or leg for muscle strains or minor injuries. Physicians often think they are looking at an infection or an injury, sending a patient to a non-sarcoma specialist instead of an orthopedic/musculoskeletal oncologist or surgical oncologist with expertise in sarcoma. The tumor often spreads during this delay in diagnosis.

Sierra encourages her patients to keep pushing for answers. “If you have pain, investigate until you find answers,” says Sierra. “Don’t let anyone dismiss your concerns.”

Specialized centers save lives.

Studies show that patients with rare or challenging cancers have better outcomes and fewer complications when treated at specialized centers with extensive experience and expertise. As South Florida’s only NCI-designated cancer center, Sylvester offers access to the most advanced clinical trials and innovative therapies that enhance survival rates for sarcoma patients.

Sylvester has one of the largest sarcoma oncology programs in the nation, treating approximately 900 new sarcoma patients a year. Its highly specialized, multidisciplinary team of oncologists, researchers, and world-class pathologists focuses exclusively on sarcomas. They meet regularly to discuss their cases, determine trial eligibility and develop the best treatment options.

“Patients come from around the world to receive treatment at Sylvester,” says Sierra. “Raising awareness about rare diseases like sarcoma is essential to developing earlier diagnosis, better treatments and stronger patient support.”

Debby Teich is a contributor for Sylvester Comprehensive Cancer Center.

Tags: APRN, Dr. Gina D’Amato, giant cell tumor, sarcoma, Solange Sierra