There are two things that add to the grief I feel after losing my husband, Dan, to lung cancer in April 2013. The first is that he blamed himself for his disease because he once smoked. The second is that he would have been an ideal candidate for screening with low-dose CT scans, but unfortunately the National Lung Screening Trial's recommendation that certain smokers and former smokers be screened annually weren't released until it was too late.
Catching Dan's lung cancer earlier could have saved his life.
In January 2011, I asked our primary care physician to screen Dan using a spiral CT scan. I had read about the promising but unpublished results of the National Lung Screening Trial (NLST), and, given Dan's risk factors, it seemed prudent to get the screening. Our physician did not have firsthand knowledge about the purpose or accuracy of this test and, understandably, did not recommend it for Dan. Eight months later, in October 2011, Dan was diagnosed with stage 4 lung cancer.
I read everything I could about lung cancer treatments for the next 18 months, drawing on my experience as a mechanical engineer, reasoning out exactly how things work and approaching the problem from every angle. I read journal articles, combed the clinical trials database, joined online patient forums, and teamed up with our oncologist to set up expert consults, get second opinions, obtain molecular testing of Dan's tumor, and secure FDA approval for the compassionate use of an experimental lung cancer vaccine. Unfortunately, as is the case with most late-stage lung cancers, my efforts were in vain for Dan. He died in my arms at our home more than 20 years after we exchanged our vows at sunrise on the beach.
While I cannot change the outcome for my husband, I can help change both the experience and the outcome for others facing lung cancer. Raising awareness about the damage the stigma associated with lung cancer causes and educating people about the promise offered by lung cancer screening, could save future lives. Sadly, because lung cancer frequently has no symptoms, almost 80 percent of cases are diagnosed at later, less treatable stage.
Four days after Dan died, I called our primary care physician and convinced him to start discussing lung cancer screening with his patients. Several weeks later, I briefed the internists in his practice on the NLST results. It seemed to me that focusing on screening would result in the most lives saved. If we could catch cancers before they spread, more patients would survive the disease.
I continued my efforts by producing and handing out close to 2,000 pamphlets on lung cancer screening, posting YouTube videos, participating in lung cancer walks, volunteering for the American Lung Association, advocating for Free to Breathe (a group made up of lung cancer survivors, advocates, researchers, health care professionals and industry leaders), and volunteering to help implement its lung cancer screening program.
Through my volunteer efforts, I became involved in lung cancer summits, seminars, and advocacy events. I went on the radio, wrote op-eds, and reviewed lung cancer grants as a patient advocate. This work led me to begin earning a master's degree in public health, which I expect to complete in May 2016. I am also working as a consultant to a lung cancer screening team. While I am thrilled lung cancer screening is now recommended by both the USPSTF and CMS and covered by insurance and Medicare without a co-pay, the journey to saving lives is just beginning. Changing the status quo in medical care is a herculean task.