EDGEWOOD, Ky. – Tony Luebbers was one of the first patients in which his hometown doctors at St. Elizabeth Healthcare could work hand-in-hand with the Mayo Clinic in Rochester. It turned out to be one for the medical books.

Luebbers, a retired accountant, had gone to see his family doctor in this northern Kentucky city complaining of stomach pains. Multiple screenings and biopsies left doctors baffled. Through St. Elizabeth’s affiliation with the Mayo Clinic Care Network, Luebbers’ Kentucky doctors were able to share lab results and medical records, and consult directly with Mayo’s deep bench of experts.

The cancer Mayo eventually pinpointed, Ewing’s sarcoma, is extremely rare. Less than one percent of all cancers are in the sarcoma family, and Luebbers’ type was even rarer still. Most Ewing’s sarcoma tumors are found in teenagers and young adults, often in their bones. Luebbers was 65, with a tumor lodged in his colon and liver.

“Mayo was so specialized, we could talk to four different doctors at the same time,” Luebbers said this summer, about a year after surgery in Rochester. “It was the best of both worlds.”

Mayo doctors developed his treatment protocol, which included 17 rounds of chemotherapy at St. Elizabeth, a few miles from his home. In mid-May, he was given a clean bill of health and began working on his tennis game again.

But the cancer returned — with a vengeance. On Aug. 3, just 12 days after doctors discovered its spread, Luebbers died.

Oncologist Dr. Scott Okuno, a sarcoma expert and one of Luebbers’ doctors, said Luebbers’ case gives doctors a “larger wealth of understanding” about standard treatment approaches to Ewing’s sarcoma and patient outcomes. 

With such rare cancers, each case is “vital,” he said, and adds to the medical knowledge Mayo can share with others, including physicians affiliated with the network.

“If you’re a doctor out there seeing one patient like this every five years, that’s different than us — this is all we do,” Okuno said. “We gain a lot more experience.”

For Mary Luebbers, that provides some comfort.

“Tony wondered whether his case might help their understanding of the disease,” she said. “He would have like to have been of service in this way.”