Throughout his esophageal cancer treatment, Ross Bernkrant never once looked up the survival rates.

“I knew it wasn’t good,” he says. “I just repeated to myself, ‘I am a statistic of one.’”

Ross’ cancer diagnosis was a statistical outlier from the start. Esophageal cancer is rare. It makes up about 1% of all cancers diagnosed in the United States. It’s even more rare in young patients – fewer than 15% of cases are found...