When pain spread across Bill Roeting’s right eyebrow and into his eyelid, his primary care doctor initially thought he had shingles. But the pain grew progressively worse for the 73-year-old resident of Fairfax City, Virginia, forcing Roeting to embark on a long and arduous search for answers.

That journey took him to multiple academic medical centers, where neurosurgeons and other specialists diagnosed him with everything from trigeminal neuralgia to cluster headaches and even “ghost pain.”

Among the many treatments and surgical procedures he received, nothing worked. “One procedure was supposed to relieve pain for two years, but it didn’t even relieve pain for two minutes,” Roeting recalls.

With his pain intensifying, Roeting had to cut back his work as the director
of the Rapid Prototyping Research Center in the College of Engineering and Computing at George Mason University, where he researched and developed innovative technologies for the military in a late-life career following decades of work as a researcher and naval aviator.

In conjunction with the pain, Roeting developed what he interpreted as a severe case of dry eye, for which he began seeing Sezen Karakus, M.D., an ophthalmologist specializing in cornea and external eye diseases at the Wilmer Eye Institute. Karakus diagnosed Roeting with atypical, early-stage neurotrophic keratitis, a degenerative disease of the cornea that can develop as a result of damage to the trigeminal nerve.

“I told Mr. Roeting this was the beginning of a long journey together,” Karakus says, explaining that neurotrophic keratitis is a chronic condition that takes ongoing treatment to manage. But Karakus sensed that something else was causing her patient’s excruciating pain and urged him to keep seeing specialists to determine a root cause.

At a medical center across the country, neurologists reviewed Roeting’s case and “didn’t even think my pain was real,” Roeting says. “They diagnosed me with ghost pain and wanted to insert some kind of electro-transmitter in my body to trick my brain into not feeling pain.” Roeting considered traveling for the procedure, when something unexpected happened: He started to lose sight in his right eye.

“I messaged Dr. Karakus, telling her, ‘I’m losing my vision!’” Roeting shares. “She got me in to see her immediately and, ultimately, saved my life.”

In the clinic, Karakus saw that vision in Roeting’s right eye had decreased from 20/25 to 20/40 — not an alarming drop, but one that corneal disease alone could not explain. Karakus conducted an extensive examination that included checking the visual field and taking cross-sectional images of the optic nerves and retina.

“Only the visual field testing turned up an abnormality,” Karakus says. “The results weren’t specific, but I noticed reduced sensitivity and a visual field defect, suggesting a blind spot in the line of sight.”

Karakus picked up the phone, calling the Division of Neuro-Ophthalmology at Wilmer to arrange for Drew Carey, M.D., a neuro-ophthalmologist, to see Roeting that same day. After an extensive review of Roeting’s medical records and images, Carey and his team identified something significant: Roeting had a lesion behind his right eye and a scar on his forehead, from where skin cancer had been removed some 20 years earlier.

The lesion and scar provided the clues they needed to make a probable, yet unnerving, diagnosis: orbital cancer.

“Cancer can unfortunately travel along tissues that coat sensory nerves in that area and use them as a roadway, carrying cancer back into the eye orbit and even the brain,” Carey explains. Piecing together knowledge of Roeting’s skin cancer “with the fact that his optic nerve, trigeminal nerve and sixth nerve were all impaired, we knew there was really only one explanation: a tumor in the orbital apex.”

“Nobody had identified the tumor on the MRI, but on the images, we could see a thickening in the area of the orbital apex, at the back of the eye socket, representative of what could be a tumor,” he says. To know for certain, Roeting would need to have the tumor biopsied, a complicated procedure, given the location of the tumor deep in the eye’s orbit, where nerves and bloods vessels cross paths.

“It’s really delicate back there,” says Nicholas Mahoney, M.D., chief of the Oculoplastics Division at Wilmer, who partnered with Jon Weingart, M.D., a neurosurgeon at Johns Hopkins Medicine, to perform the biopsy.

The team’s theory turned out right: Roeting’s earlier skin cancer, squamous cell carcinoma, had traveled along his nerve to his eye socket. But treating the cancer wouldn’t happen easily.

“Traditionally, these cancers are hard to treat because they can’t be cut out and don’t respond well to chemotherapy,” Carey explains. “High-dose radiation could work but can cause permanent nerve damage and blindness.”

Fortunately, Roeting was a candidate for immunotherapy, a newer treatment that triggers the body’s immune system to fight the cancer. Within a week of his surgery, Roeting started receiving immunotherapy from Evan Lipson, M.D., an oncologist at the Johns Hopkins Kimmel Cancer Center. He continued receiving treatments for close to a year, while working with the Johns Hopkins Palliative Medicine Program to manage the pain.

“Immunotherapy was like a miracle,” Roeting says. “All of a sudden, my eyesight came back, and my pain was reduced significantly.”

“No one will tell me my cancer is gone, but they tell me it’s stable, which means ‘in remission,’” Roeting says. “And I have this amazing team at Wilmer and Hopkins to thank for, well, my life.”