John considered himself relatively healthy when he received a serious shoulder injury at work that required him to see his healthcare provider. The CT scan, which was supposed to determine a course of treatment for his shoulder, found something much more serious. A tennis ball-sized mass was found in his left lung that required immediate action. From there, things moved quickly. A biopsy revealed that John had a very aggressive cancer, so just a few days later he was taken into surgery to remove a lobe of his left lung.
The next year of John’s life involved a number of different treatments including chemotherapy and targeted therapy that resulted in many uncomfortable side effects and did not seem to slow down the progression of the cancer. John’s wife, Stacey, watched firsthand as the chemo and other drugs drained the life out of her husband. Having lost her mother to cancer, she was afraid of the path that they were going down. But they were not about to give up.
Frustrated, his healthcare provider decided to test John’s biopsy tissue for biomarkers. At the time, this was a newer idea, but since the other treatments were making John so sick, it was worth a try. The test determined that John had ROS1-positive lung cancer, which had a very specific treatment that was known to be effective. “It was like boom, suddenly everything changed. I took the medication and six weeks later the cancer was almost completely gone. And I have been on that same medication ever since,” John explained.
“I still get queasy sometimes, but most of the other horrible side effects are gone. Now I can get on the treadmill, ride my bike or practice basketball with my son. It seemed like a 1000% turnaround. It changed my life,” he continued.
Stacey agrees that the change after biomarker testing found targeted therapy for ROS1 gene was remarkable. “I had accepted that we might lose him but then the biomarker testing changed everything. Now he takes one pill every day by mouth and his cancer has been eradicated. It has given me so much hope,” she said.
Breaking Barriers for the Black Community
At a time when John felt little hope, he was so grateful for the hard work and advanced knowledge of his healthcare team. “I had no idea what biomarker testing was, but I had a great healthcare team who kept pushing for me. So, I know how vital it is to ask questions, but you can’t do that if you don’t know the right ones to ask,” John said.
That is why John has made it his mission to spread the word about biomarker testing and how it can save your life. It all started with him sharing his story at a community hospital meetup in Chicago. Because of how many people resonated with his story, he was asked to become a LUNG FORCE Hero and Advocate with the American Lung Association. Since then, he has attended Advocacy Day in Washington D.C. where he shared his story with members of Congress and asked for additional funding for biomarker testing. Through these advocacy efforts he has also come to recognize the importance of spreading his message to other people of color, especially the Black community. As a Black man, he hopes to reach an underserved community, where he believes there needs to be more education on lung cancer. “Many people in the Black community are afraid because of a lack of knowledge and available information,” he said.
“Before I was diagnosed, I wasn’t too sure about healthcare organizations myself. In the past, unethical testing was done on Black Americans that cause some people to avoid doctors,” John said. “But I am here to tell them things have changed, and doctors are here to help. I am living proof that money given to health organizations is going toward worthy research. I hope that when people hear my story and see my face they believe in this important mission.”
“I think a lot of Black Americans are afraid to go to the doctor and one of the main reasons is because they can’t afford healthcare,” Stacey continued. “But we need to find a way to get those check-ups and vaccinations, like we did during the COVID-19 pandemic because they can save your life, just like what happened with John.”
Final Thoughts from a Cancer Survivor
John strongly believes that biomarker testing saved his life and preaches that message to anyone who will listen. “Cancer doesn’t care about your race, financial status, sexual preference or anything else which is why we need to spread the word to everyone. Go to the doctor, get tested, don’t put your life on the line,” he said.
“Biomarker testing not only saved my life, but it also actually allows me to live it.”
The American Lung Association is committed to ongoing work to build awareness and education for biomarker testing for all people living with lung cancer, including their caregivers. Biomarker testing done early in a patient’s lung cancer journey can enable individuals to take advantage of potential treatment options that may improve their quality of life and their chances to BEAT lung cancer. Through our recent biomarker work, lung cancer patients and their caregivers can now have help to make sense of the technical information and the many acronyms such as ALK, EGFR or KRAS while generating life-changing awareness for caring about biomarker testing through storytellers, quizzes and provider and patient education as people navigate biomarker testing.
To learn more about how early diagnosis, biomarker testing and targeted treatment can save lives, visit our Biomarker Education, Awareness and Testing (BEAT Lung Cancer) project at Lung.org/beat-lung-cancer.
Blog last updated: November 4, 2024
