By Ruth Harper-Rhode of URMC Rochester
Before Jeff Clark received an unexpected lung cancer diagnosis at age 42, he and his wife Kathy weren’t familiar with the disease.
But ever since Jeff’s diagnosis in 2013 – received while Kathy was pregnant – the couple have become advocates, not only for Jeff’s health, but for improved lung cancer awareness and research broadly. Jeff never smoked, but he and Kathy believe in the importance of erasing the stigma for all with lung cancer.
“The truth is, anyone with lungs can get lung cancer,” Jeff says. “Really everyone deserves a fighting chance.”
Jeff received his diagnosis after flu-like symptoms, including a prolonged cough. He’d thought it was just a cold, but after his wife and a friend urged him, he went and got it checked out. In fall 2013, they learned Jeff had stage 4 lung cancer and he came to Wilmot Cancer Institute for care.
Scans showed the cancer had spread to Jeff’s liver and, about a year after his initial diagnosis, he also dealt with metastasis spots on his brain. Genetic testing showed his lung cancer is ALK-positive, which means a problem with the anaplastic lymphoma kinase (ALK) gene. Luckily, treatments exist to specifically target this.
His medical oncologist, Deborah Mulford, M.D., started him on a targeted therapy, and, a year later when the cancer grew, Jeff received stereotactic radiotherapy for the cancer spots on his brain with Michael Milano, M.D., Ph.D.
Support from family and friends – and other advocates Jeff and Kathy have met through social media who are also living with lung cancer – has made all the difference. In addition to talking regularly with others who have lung cancer, they leaned on national organizations for support and to advocate for lung cancer awareness.
For example, in 2016, Jeff attended a Buffalo Bills game through former NFL linebacker Chris Draft’s Team Draft, which sends lung cancer survivors to NFL games. Attending wasn’t just about having a good time – although Jeff enjoyed meeting some of the Bills’ greats, like Thurman Thomas and Andre Reed. It aimed to show the face of lung cancer, in hopes of breaking the stigma the disease carries.
“Getting seen out and having fun is good,” says Jeff. “You could be at a football game and someone next to you has cancer and you don’t even know.”
He and Kathy have also become involved with an organization called the GO2 Foundation for Lung Cancer, which raises awareness and funds for research of the disease.
“Because of the research that’s been done so far, we are able to celebrate these milestones. The scary thing for us is if the groundswell for this doesn’t continue, we won’t be fortunate long term,” says Kathy. “It’s amazing and we’re celebrating but we’re cautiously optimistic to that. We ourselves are raising money for foundations. We need more people to do that because lung cancer continues to be the number one cancer killer.”
As of November 2021, Jeff is on his third targeted therapy and is doing well. He’s also had stereotactic radiotherapy for brain metastasis five times over the last eight years. Through it, he continues to work at Paychex, where he’s been for 25 years.
“I haven’t let the cancer let me skip a beat,” he says regarding his job in risk management.
He and Kathy built a new house in Webster, something they never thought they’d do.
Perhaps most importantly, Jeff has been there to watch his sons grow. He now has a son who’s a sophomore at the University at Buffalo, another son who’s a senior in high school and his third son – born months after Jeff’s diagnosis – is in second grade.
“It’s been really amazing, every time you hit a milestone either personally with your relationship or with our kids, it just feels so significant and gratifying and we just feel really blessed,” says Jeff.
While Jeff’s cancer remains stable, he still has regular scans and check-ups with his medical oncologist, as he stays on the targeted therapy treatment.
Through this, Jeff and his family lean on their national and local friends and support networks, but they’re also grateful for their team here at the University of Rochester – and the research and advocacy work that organizations around the country continue to do.
“I’ve been really pleased with my care here at Wilmot. I have a great relationship with my doctor,” Jeff says. “I’m just hopeful for continued research and development of drugs and solutions.”