There’s an old saying familiar to all doctors in training: “When you hear hoofbeats, think horses, not zebras.” The adage reminds doctors that most ailments are common, and that the answer to why a patient is suffering is usually a condition that’s well-known and commonly treated. Rare diseases are, well, rare, and it’s a better use of time to start with what is common than to go looking for a rare condition, even if the symptoms seem puzzling.
But sometimes it really is a zebra making the hoofbeat sounds, and that’s how it turned out for an Ohio man who thought he was suffering from unrelenting and recurring sinus infections.
At age 27, Aaron Agler got his first sinus infection, and it turned out to be a chronic condition for him. Time after time he’d go back to the doctor for another round of antibiotics. The infections were also disrupting his sleep by causing heavy snoring, which looked at first like the man had sleep apnea. Sleep apnea is a condition in which the soft tissue in the mouth and breathing passages relaxes so much during sleep that it blocks the airway. Sufferers often stop breathing for several seconds or longer, multiple times during an hour.
But Agler wasn’t just having repeated sinus infections, and he did not have sleep apnea. He had cancer. His girlfriend Danielle Styler often speaks for Agler as his condition has made his voice impossible to use sometimes. She said her boyfriend’s doctor eventually stopped prescribing the antibiotics because it was clear “something else is going on here.”
She said an examination of Agler’s mouth gave strange results—the tissue of the roof of his mouth was pushed down noticeably.
So Agler went in for a battery of tests in early 2018 to get the shocking news that he was suffering from a rare sarcoma of the soft tissue. The cancer is called nasopharyngeal rhabdomyosarcoma. This cancer eats away at the soft tissue in the neck and the cancer was slowly destroying Agler’s pharynx, the muscular breathing tube in the neck. Doctors describe the condition as “super rare.”
Treatment for Agler has been rough and continuous, with his hopes being raised only to be dashed again when the cancer returned multiple times. So far he has had chemotherapy, radiation, and two tracheostomies—that’s when a hole is made in the windpipe so a patient can breathe.
A year after one treatment, Agler was shocked to look inside his mouth and see the same tumor growing back again in the roof of his mouth.
While he has had more surgery and has been declared cancer-free, Agler is tempering his expectations. He knows it might come back, but he said he is thankful to be where he is now at age 34.
