May 6, 2015 | By Emily Bennett Taylor
I was diagnosed with lung cancer in June of 2012 at the age of 28. I’m 31 now. At the time of diagnosis, I worked as a team leader in the legal and compliance department of a financial management firm. Now, I work as a spokesperson and patient advocate for the Bonnie J. Addario Lung Cancer Foundation.
For the past two years, I have been NED (no evidence of disease) following an extrapleural pneumonectomy (they removed my right lung), chemotherapy and radiation. I haven’t been on any treatment since April 2013, and have been receiving scans every three months. I’ll be moving to a scan every six months from now on.
I grew up in northern Idaho – clean, fresh air. A place you’d never think would cause lung issues. However, if you look at the Environmental Protection Agency’s map of Idaho, my county, Latah, has a red radon level. Many homes there – including my childhood home – have working basements with bedrooms, like mine. I am fairly certain my lung cancer had something to do with my exposure to radon (radon is the second leading cause of lung cancer). This was tough on my parents – there’s a lot of guilt there – but without regulations on radon testing in home sales, there was no way for them to know. I would love to see more articles written that discuss radon and its role in lung cancer.
Most people diagnosed with lung cancer can tell you there’s a stigma attached to the disease. Everybody asks you if you smoked. But the stigma goes much deeper than that. Let me explain.
The newest treatments for lung cancer are genomic markers. If a patient tests positive for a certain genetic marker (examples include EGFR, ALK, ROS1, KRAS) they are spared harsh traditional chemotherapy and instead given a daily pill regimen. This pill attacks only the cancerous cells, and thus has far fewer side effects than traditional chemotherapy. Success rates are very high with these treatments.
When I was tested for genomic markers, they found none. Thus, my only course of treatment was traditional IV chemotherapy, side effects and all. And it’s only about 20 percent effective. Scary stuff.
This may not seem like it’s “stigma related,” but lung cancer funding – and thus research – is woefully behind other cancers. I and many others believe this is directly related to stigma. People’s wallets don’t open up to donate and give if they don’t feel like they’re at risk of getting this disease. And since most of us (myself included, pre-diagnosis) see lung cancer as a “smoker’s disease,” we feel exempt from the risk of lung cancer if we don’t smoke.
This is true on a personal level, and on a systemic level. Lung cancer receives a fraction of the funding other cancers receive, many of which have survival rates above 85 percent. And when you don’t have funding, you don’t get research, you don’t find better treatments, and you don’t have cures. And you end up with lung cancer’s 17 percent [five-year] survival rate.
And that leads me back to my experience with genomic markers and stigma. Because of the stigma-causing lack of research, my genomic marker hasn’t been found yet. It’s there – everyone has one – but there simply isn’t enough research being done to find it and develop a targeted treatment. So yes, I’ve been affected by the lung cancer stigma.
I had to undergo traditional chemotherapy and was nauseous and vomiting, weak and sick for weeks at a time, all while petrified that I wouldn't be part of the slim 20 percent for whom it is effective. All because advanced treatments for me didn’t exist. All because people believe “only smokers get lung cancer.”
I’m living proof that this is just not the case, and I’m incredibly lucky to still be here. In order for others to survive this disease, that stigma has to end.