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Survivor Spotlight: Nate Bilinski

Collaboration—that buzzword heard so often in marketing—has a bigger impact on cancer patients than many realize. South Bend native Nate Bilinski knows it firsthand—the work between two extraordinary healthcare providers is what saved his life.

Nate’s story is nothing short of remarkable. Growing up, he spent happy childhood years at St. Jude Grade School, then Marian High School. A chance to play baseball at Holy Cross College marked his transition to a storybook young adulthood. A couple years in, however, things began to change. His attitude shifted; he was both disinterested and irritable. No longer the kid with the good sense of humor, his personal relationships suffered. Within six months, he quit the baseball team, then flunked out of school. He’ll tell you now that no one liked him then.

Grappling to understand what changed their son, his parents took him to a therapist to check for depression. His personality changes made no sense to him either, but Nate resisted being treated for a mental illness. He got a job at a factory and watched from home as his college buddies graduated and started their careers.

Later, when the headaches started, his doctor wasn’t overly concerned. After all, it was a stressful time in Nate’s life—headaches would be a natural physical reaction.

But they persisted, eventually affecting Nate’s vision and movement. It was clear something was wrong. After a CAT scan revealed a golf ball-sized tumor on his brain, he went into surgery immediately. Nate and his parents knew brain cancer was bad, but they were in no way prepared to hear just how bad. Nate had glioblastoma, an aggressive cancer that was lethal in nearly every case. He had at most, six months to live. He was 22.

His medical oncologist recommended he begin chemo and radiation immediately, measures that might prolong Nate’s life for a while.

But here’s where the story gets interesting. His parents said no.

“They actually said to this doctor—a really good doctor who wanted to start immediately this treatment that would buy them a little more time with their son—to hold off,” Nate said. “They needed time to process and to look at alternatives.”

It was the pivotal decision that saved their son’s life.

Taking time off work, his parents began the arduous task of researching any hospital or clinical team researching their son’s cancer. They weren’t looking for more time, they wanted a cure. A second opinion to offer them hope. They worked the phones. Duke. Miami. A host of other places, before choosing the University of Michigan, whose Brain Tumor Program had a promising clinical trial.

With approval from his oncologist, Nate underwent grueling tests to see if he was a suitable candidate for it. He was accepted in DC Vax, an immunotherapy treatment program which used Nate’s own cells to fight the cancer within him.

For two years, the collaboration was constant between Nate’s local oncology team and his clinical trial team at the U-M. After every treatment and every surgery, there were reports and emails exchanged to bring each other up to speed on Nate’s progress. The immunotherapy and six surgeries were done at the U-M, while his chemo and radiation were here.

The process worked well, so well that when Nate made it to the end of the clinical trial, no one quite knew what to do next. People rarely survived this and yet his tumor was gone. The clinical trial worked exactly the way the doctors intended.

Now, 5 years later, Nate is cancer free. His doctors aren’t as worried anymore about recurrence. He only takes medication for seizures, a side effect, though they’re rare.

Nate long-ago decided the only way to get through this, and to help those he loved, was to be hopeful and maintain his rediscovered sense of humor. He became a fighter, using the tenacity he saw in his parents. He survived treatment, then went back to Holy Cross and finished his degree. Through it all, he kept his job in the factory. And now wants to share his story and let others know they have options.

“When a doctor tells you that you don’t have options...that only 1% survive...even then you still have options. The standard treatment isn’t for everyone,” Nate says. “My parents called every hospital in the country who worked on this kind of cancer, and didn’t stop until they found a clinical trial that might work for my case. They didn’t accept the standard treatment was the best thing for me.”

Nate doesn’t blame the doctors who initially outlined the treatment plan. In fact, he understands their thinking. “But you have to be willing to ask questions. Find out everything you can—even if a treatment is not FDA approved. It’s still worth looking at. I’m here because someone did that for me.”

Nate’s goal is to do the same for others, helping connect cancer survivors to available clinical trials. Through RiverBend, he’ll share his story. He talks to survivor groups about hope and the importance of collaboration.

“I have a perspective not many others can offer,” he says. “It seems wrong not to do something about it.”

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