A young man in the prime of his life is struck with a rare cancer, and travels across the country to receive treatment for it.
When 32-year-old Corey LiDonne isn’t busy at his job at Facebook, the electrical engineer-turned-construction manager can often be found outdoors in Oregon: skiing; hiking along the coast; or camping on the beach while taking in the surrounding bluffs and cliffs, a backdrop of which he never tires. But recently, Corey has had to interrupt his busy lifestyle as he confronts a surprising diagnosis.
In February of 2019 he was diagnosed with sacral chordoma, an aggressive but slow-growing form of cancer so rare it’s detected only in about one in one million people per year, and just 300 patients in the United States annually. Corey wasted no time gaining access to the best treatment he could find. From his home on the West Coast, he researched his options. Within a week, he had contacted Johns Hopkins and gotten on a plane headed to the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins for a consultation with neurosurgeon Sheng-Fu Larry Lo, MD, MHS.
Dr. Lo called me personally from his cell phone and talked to me for about 25 minutes,” Corey recalls.
In addition to the academic medical center’s stellar reputation for treating rare cancers, Corey says the easy accessibility to members of Hopkins’ treatment team sealed his decision to head East. “Dr. Lo called me personally from his cell phone and talked to me for about 25 minutes,” Corey recalls. The neurosurgeon also cleared time in his schedule to meet Corey in his office, where he pulled up images of Corey’s MRIs and CT Scans to show him exactly where the tumor was and what his plan was to remove it. Dr. Lo also showed Corey an example of another similar tumor, caught relatively early and operated on successfully. Before Corey began his treatment, he also met with other doctors who would be part of his multidisciplinary medical team, including radiation oncologist Kristin Redmond, MD, MPH.
Despite the rare nature of chordoma, explains Dr. Redmond, as a renowned academic medical center Johns Hopkins treats a relatively large number of patients with this type of cancer. This gives Hopkins’ clinicians the leverage to utilize strategies that other hospitals may not have the experience to employ. For instance, despite proton radiation being considered the “gold standard” radiation treatment for chordoma, Redmond says that the Hopkins team has been increasingly utilizing stereotactic radiation, given its precision and the wound healing complications seen with other types of radiation.
“Stereotactic radiation gives a high dose of radiation to the tumor, keeping areas around it at low dose. So far, we’ve had excellent outcomes with minimal side effects,” explains Dr. Redmond, associate professor of Radiation Oncology and Molecular Radiation Sciences at Johns Hopkins. About a month after his diagnosis, Corey underwent stereotactic radiation: five 90-minute sessions on consecutive days. He says he experienced only slight grogginess and nausea during treatment. About a month after the radiation, he had surgery at Johns Hopkins to remove the tumor.
As his life has taken this unforeseeable turn, Corey finds reassurance in the stability of his medical team. “Johns Hopkins is comprehensive. All the doctors I need are right there. Drs. Redmond and Lo collaborate on a daily basis,” he says. With his get-it-done attitude and confidence in his medical team, Corey has his sights on returning soon to his active life in the beautiful Pacific Northwest.