When Terry first felt a small growth the size of a pinkie fingertip on his neck, he dismissed it as a harmless cyst. Two weeks later it had doubled into the size of a thumb and then doubled again the following week. Yet he did not seek medical help.
“I’m in medical sales,” said Terry. “I should have known better.” Finally convinced to take action by his daughter-in-law, a nurse, he went to the emergency room over a weekend to get checked out.
“On Tuesday, they said, ‘You have cancer,’” said Terry, and biopsies followed. In the meantime, the tumor grew to nearly the size of a softball before he began chemotherapy treatment to shrink the large mass, which was attached to his right tonsil, as well as a smaller nodule on the other side of his throat.
The chemotherapy resulted in dramatic improvement, but radiation was prescribed to keep the cancer at bay, and that’s where things started to get ugly. “They kept saying that my cancer was very treatable,” Terry said. “But the long-term side effects from radiation were crazy.” Not only was it likely Terry would require a feeding tube at some point during the treatment due to peripheral damage from radiation, he could permanently lose his salivary gland function and sense of taste. Chemotherapy combined with radiation, which he required, could exacerbate the symptoms. Terry and his wife, Trina, saw one throat cancer patient without his bottom teeth, another with a tracheotomy. On top of that, Terry was jarred by an offhanded remark from a radiation oncologist that traditional treatment could contribute to plaque buildup in his coronary artery.“Heart disease has been an issue in his family,” said Trina.
Desperate for alternatives, Terry remembered a newspaper article he’d seen, just two weeks before, about the Provision CARES Proton Therapy Nashville comprehensive cancer center coming to Franklin, Tennessee, where the couple lives.
“We started researching tremendously,” said Terry. His doctors were more skeptical. “In fact, one was strongly against it,” says Trina. “They said, ‘There’s not enough data.’” But after speaking to survivors who’d undergone proton therapy, those who’d endured the collateral damage of traditional radiation, they were convinced protons could accomplish what other radiation could not. When Terry and Trina, who personally support a number of cancer causes, learned that St. Jude Children’s Research Hospital, at the other end of the state, had also invested in developing a proton therapy center, they were ready to move forward with treatment at Provision. “We are strong supporters of St. Jude and know what a top facility it is,” Trina said. “That was pretty much it.”
In one marathon day, they traveled to Knoxville to meet with Dr. Allen Meek, a Board-Certified Radiation Oncologist at Provision CARES Proton Therapy Knoxville, and then went back to meet his radiation oncologist back in Franklin, who advocated for traditional radiation therapy. “You have to be your own advocate,” shared Terry. Ultimately, Terry chose to come to Provision for his treatment. While Terry’s insurance company denied his claim, he did file an appeal, and the couple decided proton therapy was worth the cost, even if they had to pay. Terry had spoken with a prostate cancer survivor who’d paid for proton therapy when denied by his carrier. He said that when he asked him, “If you had cancer again, would you pay out of pocket again?”, the answer was, “Yup, I sure would.”
“I’ve lobbied for healthcare products in Washington,” Terry said. “I realized a long time ago that there’s a lot of things out there that work, but there are also a lot of forces out like drug companies and insurance companies there that influence what gets covered.” Their time at Provision has only further convinced the couple they made the right decision for Terry’s care—one they believe providence helped guide them toward. “I’ve sat in the lobby for almost three weeks and I’ve yet to hear one negative remark from anyone,” Trina says. “That makes you feel even more like we’re in the right place.”