Meet Suzanne, an author, retired behavior analyst, and lung cancer survivor from Connecticut. 

Suzanne was an avid runner training for a race when she was unexpectedly diagnosed with non-small cell lung cancer in October 2019. After feeling sluggish during one of her runs, she visited her primary care doctor, thinking she had a chest cold. Her doctor took an X-ray and followed that up with a CT scan. Within four days, Suzanne was given the news that she had stage IV lung cancer.

For the first year after her diagnosis, Suzanne took a hands-off approach with her care and relied on her medical team. A tissue biopsy and biomarker testing revealed that Suzanne had the ALK mutation. Her chemo and radiation appointments were canceled, and she started taking a targeted therapy the night before Thanksgiving. Suzanne also continued running. “I took medical information in tiny bites,” she says. “I tried to avoid looking at my scans. I did not do much research because the statistics were scary.”

Then, Suzanne connected with ALK Positive, a group of people with the same type of lung cancer that she has. “I learned that knowledge is our secret weapon. I learned that more research equals more life. I learned that there are a lot of healthy, active people with lung cancer,” says Suzanne. Now, she is a much more engaged participant in her treatment decisions. She reviews her scans, asks questions, and tries to learn as much as she can about treatment options. Suzanne is currently on her second TKI, after experiencing progression in summer 2023, but she remains optimistic and determined.

Suzanne’s motivation for becoming a lung cancer advocate is three-fold: (1) She wants to ensure funding is available for continued lifesaving research. (2) She wants to educate other patients about the importance of biomarker testing. (3) She wants to help remove the stigma attached to lung cancer, which could have negative consequences. Suzanne wants more people to understand that “anyone with lungs can get lung cancer.”

In September 2023, Suzanne attended the Rally for Medical Research on Capitol Hill with LUNGevity, where she participated in advocacy training, attended a networking reception, and met with legislators to encourage them to support an increase in federal funding for lung cancer research. Suzanne is also a blogger for curetoday.com, and her work has been published in Conquer magazine.

Suzanne’s advice for new advocates is to get involved with organizations like LUNGevity and ALK Positive. “There are many ways to make connections within these groups that will lead to advocacy opportunities, as well as helping you become more knowledgeable about your cancer,” says Suzanne. Her other piece of advice is for people to share their stories to help humanize the disease.  

“Although I have stage IV non-small cell lung cancer, I live with hope,” says Suzanne. “I see researchers working together toward a cure with solid results. The strides made in recent years are amazing! I see lawmakers working toward increased funding. I see medical teams working with patients to prolong and improve their lives. And I see patients like myself making connections, holding each other up, sharing experiences, and joining forces to ensure research continues. In doing so, we honor those who have passed while giving hope to all of us still fighting.”