by Teri Simon
The course of my life changed completely on December 2, 2009, at 8:20 a.m., when my pulmonologist called and told me, “Teri, it’s adenocarcinoma. It’s lung cancer.” I said, “Well, that’s just wrong!” And he said, “I know!”
For almost a month, I had been undergoing medical testing after a tumor, believed to be a retinal melanoma, was found in my left eye. I had had every medical test known to man by then, including a colonoscopy, a mammogram, blood work, and a complete physical including a chest x-ray. Everything came back negative except for the x-ray, which looked like pneumonia. But since I’d had a preliminary diagnosis of melanoma, further testing was required. The CT scan looked the same as the chest x-ray, so the bronchoscopy was ordered, and voila: in one short sentence, I got a life sentence.
Within hours, I was in the oncologist’s office, thanks to the good efforts of a great friend who happens to also be my cardiologist. Had it not been for him, I likely would have had to wait months for an appointment. The oncologist told me that I had probably been walking around with lung cancer for a couple of years. Of course, my mind went back to 2007, when my brother, concerned for the terrible cough I had, made me swig down half a bottle of cough syrup in the drugstore parking lot, and promise to see a doctor if the cough didn’t go away. But the cough DID go away, so I didn’t see a doctor. Immediately I wondered: Was THAT when the cancer had started? What had I done? The word “cancer” was not something I ever in my wildest dreams imagined would be applied to me. After all, I was a never-smoker with absolutely no family history of cancer. Heart disease, yes, absolutely, but cancer? Not likely; until it happened.
By the time I was diagnosed, the edict was rather grim: Inoperable Stage IV Metastatic Non-Small Cell Lung Cancer (NSCLC). There is no Stage V. To mollify me, my oncologist explained to me that had I gone to a doctor about my cough in 2007, a chest x-ray likely would have shown what appeared to be pneumonia. The doctor would have prescribed antibiotics, and I would have felt better. And likely, I would have ended up in her chair two years later anyway.
Since my diagnosis, I have participated in a successful clinical drug trial, an unsuccessful clinical drug trial (which resulted in some not-so-minor side-effects), undergone a radiological stereotactic procedure, and had some very intense chemotherapy. To date, my metastases include both of my eyes, my liver, my bones, my brain, and my other lung. I believe that the healthy lifestyle I engaged in prior to my diagnosis has kept me strong and helped me manage this disease, and if you saw me on the streets, aside from my bald head, you’d never know anything was wrong.
But something is very wrong as far as I’m concerned, indeed, a couple of some things are! First of all, there is, as yet, no good diagnostic tool for detecting lung cancer, the biggest cancer killer of them all, in its earliest stages when treatments are most effective. If there were some sort of x-ray, CT scan, and/or blood test developed that could be standard practice for internists, there is no doubt in my mind that countless lives could be spared.
Secondly, there is a terrible stigma attached to lung cancer, that being the assumption that those with this disease are smokers. The truth is that today, over half of new cases of lung cancers diagnosed in this country are in female patients who are non smokers. Second-hand smoke is often considered to be a reason for the disease, as well as other environmental factors. But in truth, it is far less important to ask “why” someone has lung cancer than it is to ask “what can be done about it.” Were there to be a good diagnostic tool developed, my concern is that that tool would only be available to those with high risk factors for lung cancer, and people like me would end up just like me: diagnosed with a disease in its last and most deadly stage.
Finally, it is a fact that the least amount of cancer research dollars goes to lung cancer research. How is it possible, I wonder, for the top cancer killer in this country to be so under-funded? Certainly, the lack of funding must be linked to the stigma of this disease, and the presumption that those afflicted are guilty of addiction and poor habits which resulted in lung cancer. Clearly, something must be done to erase the stigma, educate the public, inform legislators, and implement changes.
My hope is that by sharing my story, a little of that enlightenment can happen, and that working together, we can make that change.
Author and stage IV survivor Teri Simon tells the story of her first year of living with lung cancer via a series of blog posts that are frank, warm, humor-infused and, most of all, full of hope. A portion of proceeds benefit LUNGevity. You can get Teri’s incredible book, Perspectives of a Flying Elephant: My First Year in the Land of Lung Junk, on Amazon today!