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Kidney Cancer Survivor Amazed by how well Smilow Doctors Listened

March 19, 2024
by Terence P. Corcoran

It’s accurate to say that Terrence “Terry” Rainey, a 58-year-old excavator operator from Trumbull, is a tough guy. At age 12, he was hit by a car but never treated for his injuries, and he once started a new job with a broken collarbone. His philosophy is to wait for the pain to subside, then carry on.

So, it was little surprise that when Terry fell at work in August 2021, hurting his ribs, he waited for the pain to go away. Except it never did – and by Christmas 2021, it was so severe that he knew something was wrong. Unfortunately, he didn’t have a primary doctor, so it wasn’t until April 2022 when Terry finally saw one. By then, the pain sometimes made it difficult to breathe.

“When my doctor couldn’t find anything, he ordered some X-rays,” said Terry, a married father and grandfather. “The X-ray technician saw things he could not explain and called my doctor immediately, suggesting a scan.”

They were able to get a scan relatively quickly. When the results came in, they were forwarded to Smilow Cancer Hospital at Trumbull.

“In the scan, I looked like a human glowstick,” Terry said. “Cancer was everywhere.” The results showed cancer not only near the ribs that hurt, but also on the other side of his ribs, and near his sternum, back, hip, and femur.

Two years later, thanks to the treatment and care he received at Smilow, the tumors caused by metastatic non-clear cell kidney cancer are shrinking, Terry is back at work – and he can’t say enough about Smilow as well as his doctors’ willingness to listen to him.

“I just want to say how phenomenal the doctors are and how well they’ve worked at putting me at ease and getting my mind to function going forward and not dwell on what happened,” he said. “Really, everyone I met at Smilow – in Trumbull or in New Haven – has been incredible. Everyone takes the time to listen to you.”

While Terry is in a good place now, the journey has had its difficulties. The tumors in his left hip and femur caused doctors to consider a hip replacement – until an Xray revealed a damaged hip socket from when he was hit by a car as a boy. His orthopedist, Gary Friedlaender, MD, BS, the Wayne O. Southwick Professor of Orthopaedics and Rehabilitation and Professor of Pathology, opted instead to install a rod, a more complicated procedure.

“Both sides of my (left) hip and femur were so riddled, they did radiation and a process to stop blood flow before installing the rod,” Terry said. He then went on a regimen of anti-cancer medications and was initially doing well until things turned for the worse.

“He couldn’t hold anything down and over the period of a couple of weeks went from 185 lbs. down to 120,” said Tina, Terry’s wife of six years and partner for 14. “It wound up that (one of the medications) had given him diverticulitis.”

It was around that time in Fall 2022 that Terry sought a second opinion. He didn’t want to tell his oncologist, Harold Tara Jr., MD, Assistant Professor of Medicine (Medical Oncology), because he was afraid he would insult Dr. Tara. Instead, Dr. Tara encouraged a second opinion and even helped Terry set up an appointment with David Braun, MD, Assistant Professor of Medicine (Medical Oncology) and the Louis Goodman and Alfred Gilman Yale Scholar. But Terry was not in a good place when he first met Dr. Braun around December 2022.

“Dr. Braun’s first impression was of this man being wheeled around,” Tina said. “Dr. Braun told me he would not be surprised if we were short-lived into hospice.”

Then Terry spent some time in the hospital “getting the best rest,” he said, unaware that he might be headed to hospice. Instead, he had an amazing turnaround.

“The week after I got out of the hospital (in Spring 2023), I walked into Dr. Braun’s office. Then two days after that, we got on a plane and flew to Las Vegas. We walked 65 miles over 10 days and had an unbelievable time,” he said.

“For Mr. Rainey, the true answer is that we don’t know what leads to such ‘exceptional’ responses,” Dr. Braun said. “One of the core things my laboratory studies is how we can understand the biology of such exceptional responses to therapy, both so we can try to predict these in the future, and also so that we can hopefully think of new therapeutic combinations that could lead to more exceptional responses.”

Terry’s story is a reminder of how far the field has come with new therapies, and how much hope and promise there is, Dr. Braun said. But, he noted, there are situations where patients don’t do as well. “That is a constant reminder that, as a scientific and medical community, we have to keep pushing forward with better research for better therapies that could help more patients.”

Today, Terry is back at work while still on one of the medications. And he still can’t say enough about the doctors at Yale. Doctors tell him the bone lesions are almost gone.

“Every doctor I have been with so far tells me to talk and they listen. I have been so fortunate to find doctors from the beginning, who listened to me. They actually listened and we worked through things together.”

So, what’s next for Terry?

“I found out we hired an 18-year-old kid at work. We’ll have to see if he can keep up with me.”

Submitted by Emily Montemerlo on March 22, 2024