Jim’s Story: 20 Years of Survival and Advocacy

When Jim was diagnosed with stage 3B (IIIB) non-small cell lung cancer in 2005, treatment options were limited, and the outlook was grim. Biomarker testing was unheard of, targeted therapies didn’t exist, and treatment options were largely one-size-fits-all. Initially diagnosed at stage 1 (I), Jim went into surgery expecting a straightforward operation, only to wake up and learn that his cancer was more extensive than doctors had thought. Surgeons had removed three-quarters of his right lung, and he would need both chemotherapy and radiation. 

Luckily, the results of his treatment were extraordinary, and Jim has remained with no evidence of disease (NED) ever since. “I am the unicorn,” he says. “And have been for quite a while.”  

Two decades later, Jim has seen lung cancer evolve from what once felt like a hopeless diagnosis into a rapidly advancing field driven by early detection, precision medicine, and community advocacy. But Jim’s story is about much more than medical progress. It’s about the people who’ve shared the path with him, the lives saved through screening, and the meaning found in helping others move forward.  

From patient to advocate 

Jim’s path toward lung cancer advocacy didn’t start in the oncology ward. It began in the neonatal intensive care unit (NICU). 

Just 3 months after his diagnosis and surgery, his daughter Stella was born, and at just 21 days old, she suffered a brain bleed. Following that, his family all but lived in the NICU for many weeks. “At that point, I thought I wasn’t going to see too much of her life,” Jim recalls. “But I thought the best thing I could do with whatever time I had left was to make sure people knew who Stella was.”  

That impulse to ensure others would have what his family needed became a lifelong mission for Jim. He first began volunteering at the children’s hospital that saved Stella’s life, joining its first Patient and Family Advisory Council. He then served on ethics committees, and, eventually, on multiple institutional review boards (IRBs) at the University of Michigan. Over time, that volunteer work drew him into the world of patient engagement and then cancer research. 

In 2012, 7 years after his diagnosis, Jim attended his first lung cancer event. “It was the first time I was in a room with other lung cancer survivors,” he said. “Until then, I had never met another survivor before.”  

It was uplifting to meet people surviving their diagnosis even longer than him, but it was also eye-opening. “Most of the other people in the room were women,” he remembers. “And many felt the need to introduce themselves by saying, ‘And I never smoked,’ as if the rest of us who had smoked cigarettes somehow deserved this. It was disheartening. Men would come to these events, mostly people who had a smoking history, but they often didn’t come back. They didn’t feel like it was their community.”  

That experience prompted Jim and a few peers to form what became known as Team Testosterone, a tight-knit group of male survivors who supported one another, challenged stigma, and provided a home for male survivors who are often outnumbered in advocacy spaces. “Our objective was just to keep breathing,” Jim said. “We wanted to show people with our own stories and our own bodies that you can survive this.” 

Living with loss, choosing “forward” 

Two decades in the lung cancer community means witnessing profound loss alongside tremendous progress. For Jim, each friend gone too soon leaves a mark and also a choice about how to carry on.  

“I could sit here and list names – just first names – and you would know who I was talking about. Cliff. Frank. Linnea. Gina. These are people who were deeply invested in this community. We become family here,” he said. “I don’t know how I’ve dealt with their losses except one at a time. Although, unfortunately, they haven’t always come one at a time.”  

Over the years, he’s learned that survival brings a different kind of perspective. “If you’ve ever met a family that lost someone suddenly, you see the devastation. I’ve had 20 years to say goodbye. I’ve had 20 years to raise my girls. It’s not about living forever for me now; it’s about living fully. I think my soul needs closure, and cancer has given me time to find it.” 

His daughters, now teenagers, grew up knowing their father was living with the threat of lung cancer. When Jim had surgery a few years ago, one of his daughters asked him when he was going to die. Jim asked her how long she needed him around. “She said she wanted me to walk her down the aisle and to be the grandfather to her kids. So we decided together that 112 was an acceptable age. I promised her I’d do everything possible to make it that long.” 

That sense of humor and determination carries him through. “If you allow wonderful things to happen to you, if you allow beauty to continue, it will. Good things will still happen. You just have to keep looking up.”  

“You can walk backward, stand still, or move forward,” he said. “But only one of those gets you anywhere that’s worth going. My father-in-law says “semper avante,” which means ‘forever forward.’ I’ve never seen another option than to move forward.” 

Championing early detection for Veterans 

In recent years, Jim’s advocacy has increasingly focused on Veteran health and lung cancer screening, an area that he believes has the greatest potential to save lives.  

“Screening saves lives,” he said plainly. “It’s really the low-hanging fruit. If you can catch it early, you can treat it. It’s often entirely curable. That’s true for lung cancer, breast cancer, and every kind of cancer. But with lung cancer, we still catch most cases by mistake or once it’s spread too far.” 

The opportunity to make an impact in Veteran communities is significant. “At the U.S. Department of Veterans Affairs (VA), you’re looking at people with increased risks. We’re disproportionately prone to lung cancer because we smoke a lot, or we’re first responders, or the work we do after service tends to be different than white-collar jobs.” 

While national screening rates hover around 16%, Jim points out that the VA is achieving something extraordinary: screening rates above 50%, and more than half of lung cancers are detected at stage 1 (I).  

“At the VA right now, we’re diagnosing lung cancers at stage 1 56% of the time,” Jim said. “That’s incredible.” 

He credits the VA’s integrated care model and commitment to system-wide screening prompts. “At the VA, your primary care doctor, your oncologist, your radiologist—they’re all on the same system,” he explained. “Their medical records track smoking history and toxic exposures, and it prompts doctors to ask the right questions. That doesn’t happen consistently in the rest of the community.” 

By contrast, he says, many civilians struggle to access even basic primary care. “Most people don’t have a consistent primary doctor anymore,” he said. “They’re seen in urgent care, so no one’s tracking risk factors or making referrals. They have to ask to be screened. In the VA, they’re asking you. The VA system isn’t perfect, but it’s working well here.” 

That success is what drives Jim’s current work as lead patient advocate on the “MAS-EXPAND” study at Vanderbilt University that seeks to broaden lung cancer screening eligibility by enrolling 27,000 Veterans to prove that expanding screening access can catch more lung cancer early.  

“We’re expanding the criteria beyond the 20 pack-year rule,” Jim said. “We’re looking at any tobacco history, toxic exposures—especially for Veterans who served around burn pits or in industrial settings – and even family lung cancer history.” 

“If we can show this works, it could change the national paradigm,” Jim said. “And I feel like it’s already saved some lives. But saving even one is enough.”  

Advice for the newly diagnosed 

Jim often connects with people newly diagnosed with lung cancer, helping them navigate the early uncertainty. His first piece of advice: Don’t believe everything you read online.  

“All those statistics are old,” he said. “None of them include people diagnosed in 2025. The options available today are tremendous and always getting better. Nothing you read online will reflect that yet.”  

But above all, he reminds people that a diagnosis isn’t a death sentence. “If you’re alive, you already have a death sentence,” he joked. “This diagnosis is just something you have to deal with now. And you can deal with it. You just get up and do it. You move forward.” 

Looking ahead  

After 20 years, Jim’s story continues to evolve. He recently finished a degree he’d started years ago. “I didn’t want my daughters to see me quit,” he said, and continues his advocacy through research, policy, and mentorship. “There’s still a lot of work to do, and I’m grateful to be around to be a part of it. As long as I can keep moving forward, that’s exactly what I plan to do.” 

Semper avante. Forever forward.