ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my  cancer has been undetectable by scans for over 6.5 years thanks to research.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years.  Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.

Eight years ago today, I first heard the words, “You have lung cancer.”

From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general.  I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.

I wonder what the next 8 years will bring.