How a renowned orthopaedic surgeon and oncologist helped a patient beat the odds
Alicia Jeffreys is living proof that miracles can happen — and dreams do come true.
The day after her 28th birthday, the newly married marketing professional was diagnosed with chordoma, an extremely rare form of cancer affecting one in one million people.
After the initial shock wore off, Jeffreys started looking into treatment options and discovered that finding a doctor experienced in treating chordoma was as rare as the disease itself. Fortunately, a relative was able to connect her to Francis Hornicek, M.D., Ph.D., a world leader in orthopaedic oncology and the treatment of chordoma. Now the director of orthopaedic oncology at Sylvester Comprehensive Cancer Center at UHealth - the University of Miami Health System, at the time the renowned surgeon was a faculty member at Harvard Medical School and chief of the Musculoskeletal Oncology Service at Massachusetts General Hospital.
During an initial work-up, an MRI revealed that Jeffreys’ case was more uncommon and more dire than originally thought. She had not one but three chordoma on her spine: the tailbone, lower back, and base of the skull.
A Difficult Diagnosis
Despite this difficult diagnosis and only a seven-year 50% chance of living, Jeffreys chose to remain positive and focus on her future. From the beginning, she conveyed to Dr. Hornicek her desire to one day have children. Throughout three grueling years of treatments, Jeffreys kept focused on her dream of motherhood.
That was not always easy. Each tumor had to be treated individually, which required multiple surgeries, lengthy radiation cycles, and extensive recoveries. Jeffreys says her most complex procedure truly showcased Dr. Hornicek’s expertise. To remove the tumor from her lower back, he had to take out two vertebrae and build a titanium cage to encapsulate her spinal cord. She spent 52 weeks in physical therapy learning to walk again.
In the end, Jeffreys says it was all worth it. Not only did she survive chordoma, a miracle in and of itself, but she is now the mother of four beautiful girls — two sets of twins. She says not a day goes by that she doesn’t look at her daughters and thank Dr. Hornicek for giving her the life she always dreamed of.
Ten years after officially being declared “cancer free,” Jeffreys still insists on seeing Dr. Hornicek for her follow-up care, even though that now means traveling to South Florida, where he is also the chair of the Department of Orthopaedics at UM’s Leonard M. Miller School of Medicine. She considers the treatment at an academic medical center, such as UHealth and the Miller School, unparalleled. “I appreciate the diversity of thought brought to the table, looking at you as a patient and not just a cancer.”
Dr. Hornicek’s recruitment has already helped establish Sylvester as a prominent chordoma institute, bringing together leading surgeons, oncologists, and researchers, along with experienced nurses and social workers to provide a multidisciplinary approach to treat chordomas.
Patients come from across the United States, as well as from throughout the Caribbean and South America, to seek Dr Hornicek’s expertise. He has treated more chordoma patients than any other surgeon in the western world.
He acknowledges that Jeffreys case was one of his more complicated ones. She had three tumors and needed an aggressive treatment plan.
“In treating chordoma you get to know the patients and their families quite well,” Dr. Hornicek said. “With Alicia, we had lengthy discussions on how to care for and treat her disease.”
Dr. Hornicek is a staunch believer that at Sylvester, as South Florida’s only National Cancer Institute (NCI)-designated cancer center, “we need to push the envelope and do everything within our power to cure the patient.” For Jeffreys that meant delicate spinal surgery. For another patient, Dr. Hornicek had to remove a segment of the aorta in order to access a primary malignant tumor on the spinal axis.
Yielding Important Results
Sylvester’s groundbreaking chordoma research will yield important results for our community. Dr. Hornicek will work closely with Sylvester Director Stephen D. Nimer, M.D., and Associate Director for Clinical Research Jonathan C. Trent, M.D., Ph.D., to expand sarcoma care and research. Chordoma is a bone cancer that is part of the sarcoma family.
“We are delighted to have Dr. Hornicek join the Sylvester team,” Dr. Nimer said. “His world-renowned expertise in this area, and his extensive research into cell biology and molecular biology of sarcomas will generate novel methods of early detection and innovative treatments into this often-debilitating disease.”
In addition to his research, the skilled surgeon continues to treat patients like Jeffreys, who come to him for treatment for a disease most other doctors have never even seen. There are only 300 new chordoma cases in the United States each year.
Jeffreys credits Dr. Hornicek with saving her life, and for that she and her family will forever be grateful.
“He was one of those doctors who realized the magnitude of what was happening to me,” she said. “He takes a thoughtful approach to patient care. Even now, in my check-in appointments, it’s not just about the chordoma but how I’m doing through this process.”