A Patient’s Call to Action: Raising Awareness About Small Cell Lung Cancer

Karen went to her primary care doctor because of chronic tiredness and a “heavy” feeling in her chest and shoulder blades. What she thought might be pneumonia was much worse: a diagnosis of extensive-stage small cell lung cancer, a less common but more aggressive type of lung cancer. Now, Karen is sharing her story to help raise awareness and bring a message of hope to others living with small cell lung cancer.

What was your life like before you were diagnosed?

Karen: I was married for 30 years and had retired after serving twice in the army and working in a plastics factory. I stayed busy with my hobbies – reading, playing cards, and bowling – and spending time with my two children and two grandchildren. But things changed in the fall of 2017. I was tired a lot but assumed it was from years of working and traveling. I felt pressure in my chest and shoulder blades and saw my doctor thinking I might have pneumonia. Concerned after looking at my chest x-rays, he sent me to specialists for further testing that eventually confirmed a diagnosis of extensive-stage small cell lung cancer, meaning the disease had already spread beyond my lungs to other areas of the body.

What was that like for you, finding out you had lung cancer?

Karen: I was shocked and scared. So many thoughts went through my mind, like ‘what am I going to do if something happens to me?’ I was worried about my son, daughter, and grandkids. I wished I had paid a little bit closer attention to the signs, like being tired all the time. I thought maybe if I had seen my doctor sooner, I would have been diagnosed earlier so I could be there when my family needs me.

What would you tell someone who has been diagnosed with small cell lung cancer?

Karen: When I was first diagnosed, I learned that not all lung cancer is the same and may be treated differently. Small cell lung cancer is less common than non-small cell lung cancer and has fewer treatment options. Learning this can be really frightening, so I would tell someone newly diagnosed with small cell lung cancer that there are reasons to hope. Scientific research is helping bring more treatment options for small cell lung cancer. I entered a clinical trial knowing that even if I wasn’t helped, the research could help other patients down the road, which was really important to me.

What else do people living with small cell lung cancer need, other than new treatments?

Karen: More than 30,000 people get diagnosed with small cell lung cancer each year. None of these patients needs to face their journey alone. We need to do a better job of getting the word out about small cell lung cancer. I think there needs to be more news and media coverage, despite it being a rarer form of the disease. With advocacy groups, patients, doctors, and anyone affected by the disease working together, it may pave the way for advances that could help improve the lives of people with small cell lung cancer and their families.

What have your learned about yourself going through this lung cancer journey?

Karen: I learned that with less common types of cancer like small cell lung cancer, sometimes finding educational and support resources can be difficult. Fortunately, my friends and family have been super-supportive. This has been a very personal journey, and I think I’ve handled it with dignity and grace. I’m trying to live my life as I did before I got diagnosed. I don’t want people feeling sorry for me; I’m a fighter and want to be around as long as I can.

What inspires you to share your story?

Karen: The reason for sharing my story is to raise awareness and increase understanding of small cell lung cancer. I want others to see that the disease deserves the same attention and level of research and advocacy as non-small cell lung cancer. I want to help patients and their families and hope that sharing my story will make them stay positive and better cope with the disease.

Are you hopeful for the future?

Karen: I think a lot of work still needs to be done to continue to bring more information and support to patients, but I am hopeful for the future. I know there’s a lot of important research being done and by supporting this research and helping raise awareness, I believe we can make a difference in the lives of people with small cell lung cancer.