When Terry Vinson first felt a small grown the size of a pinkie fingertip on his neck, he dismissed it as a harmless cyst.
Even two weeks later, when it had doubled into the size of a thumb and then doubled again the following week, he had not yet sought medical help.
“I’m in medical sales,” Vinson says. “I should have known better.”
Finally convinced to take action by his daughter, a nurse, he went to the emergency room—it was a Sunday—to get checked out.
“On Tuesday, they said, ‘You have cancer,’” he says. Biopsies followed. In the meantime, the tumor grew to almost the size of a softball before Vinson began chemotherapy treatment to shrink the large mass, 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,” Vinson says. “But the long-term side effects from radiation were crazy.”
Not only was it likely Vinson would require a feeding tube at some point during the treatment due to peripheral damage from radiation, he could permanently lose his sense of taste and disrupt salivary gland function. Vinson and his wife, Trina, saw one patient missing his bottom teeth, another with a tracheostomy. And chemo combined with radiation, which he required, could exacerbate the symptoms. On top of that, Vinson was jarred by an offhanded remark from radiation oncologist that radiation could contribute to plaque buildup in his coronary artery.
“Heart disease has been an issue in his family,” Trina says.
Desperate for alternatives, Vinson remembered a newspaper article he’d seen, just two weeks before, about the Scott Hamilton Proton Therapy Center coming to Franklin, Tenn.—where the Vinsons live.
“We started researching tremendously,” he says.
His doctors were more skeptical.
“In fact, they were strongly against it,” says Trina. “They said, there’s not enough data.”
But after speaking both survivors who’d undergone proton therapy, those who’d endured the collateral damage of conventional radiation—and even a phone conversation with Scott Hamilton’s wife, Tracie—they were convinced protons could accomplish when regular radiation could not. When the Vinsons, who personally support a number of cancer causes, learned that St. Jude Children’s Research Hospital at the other end of the state was investing in a proton therapy center as well, it sealed the deal.
“We are strong supporters of St. Jude and know what a top facility it is,” Trina says. “That was pretty much it.”
In one marathon day, the Vinsons came to Provision in Knoxville to meet with Dr. Allen Meek, radiation oncologist and medical director of Provision Medical Group, and then traveled back to Vanderbilt Medical Center to meet with providers there.
“It just felt really good up here,” Trina says.
Dr. Meek reassured the Vinsons that his side effects would be temporary and that, although there would be discomfort and other side effects from the treatment, he should not require a feeding tube and would be able to resume normal eating, drinking and talking shortly after treatment.
Unfortunately for Vinson, his insurance company, Blue Cross Blue Shield of California, denied his claim. But the couple decided proton therapy was worth the cost, even if they had to pay. Vinson had spoken with a prostate cancer survivor who’d paid for proton therapy when denied by his carrier.
“I said to him, ‘If you had cancer again, would you pay out of pocket again?’” Vinson says. “’He said, ‘Yup.’
“I’ve lobbied for healthcare products in Washington,” he says. “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 Vinsons 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.”
Read more stories of patient experiences like Terry’s at ProtonStories.com.