In 2011 Lysa started having severe pain in the middle of her back. She was finishing the last few months of her college internship and was often moving or lifting patients. She thought she had just pulled a muscle, so she saw a chiropractor, got massages, and tried to rest, but nothing helped. Four months later, the pain was so bad she finally went to the emergency room. After a few hours and multiple tests, the doctor came in with a diagnosis of stage IV lung cancer that had already spread to Lysa’s spine.
Lysa was shocked and devastated. Her only association with lung cancer equaled death. She had just turned 40 years old, had always been very active and healthy, and had no known risk factors. Her kids were 19 and 11. Of course, her first thought was of not wanting to leave them.
Lysa was admitted to the hospital to have surgery on her spine to alleviate the pain and prevent paralysis. She ended up needing 3 surgeries over the next 18 months. Following her diagnosis, Lysa had chemotherapy, radiation, and 5 more surgeries. It wasn’t until her cancer was found to have progressed, 18 months after diagnosis, that she was tested for biomarkers and found positive for ROS1. This finding made her eligible to begin treatment with crizotinib, a targeted therapy known to be effective in treating ROS1+ cancer.
Crizotinib kept her NED (No Evidence of Disease) for 4 ½ years before progression was again detected. At that point, chemotherapy was added to her existing crizotinib treatment and the combination chemotherapy plus crizotinib is still working well for her. She feels very blessed to still be here years later to spend more time with her kids and family. Lysa says “They are my world. But I want more. If I live to be 100, don’t think there will ever be enough time with them.”
Lysa now spends a lot of her time advocating for other lung cancer survivors and mentoring those that are newly diagnosed. Connecting with other survivors has been therapeutic for her. Only those in your shoes can truly understand how you are feeling. Lysa remembers how scary the initial diagnosis was and the constant search for answers and knowledge.