Confronting the lung cancer stigma

I lost my dad to lung cancer. Thirteen years later, I was diagnosed with the same illness that took his life.

The difference was that he smoked two packs of cigarettes day, and I did not.

While I did smoke occasionally in my early 20s, I have been active and healthy for most of my life. But whether a person smokes or not shouldn't matter in how we approach lung cancer patients. Through my lung cancer treatment journey, I've learned we need to end the stigma surrounding lung cancer.

My lung cancer diagnosis
Almost four months ago, I was riding on top of the world, literally. In the midst of a five-hour mountain bike ride at a ski resort in Colorado, I crashed. I was a little banged up and went in to get checked out. After a few stitches and a chest x-ray, I was cleared to go home with a bag of ice and some ibuprofen.

Two hours later, while grilling at a summer BBQ, I missed a call from the clinic. The doctor left a voicemail saying that, after a second review, the radiologist had noticed a spot on the upper apex of my left lung. He said it was probably nothing, perhaps even just some scar tissue, and that I should schedule a CT scan. I turned to my wife and said, "There is no way that is good news."

I called my primary physician the next day. I pleaded to get a CT scan ordered and scheduled. The next day, the physician's assistant informed me there was in fact an indeterminate mass, but that it was nothing to worry about. She said that given that I was young and healthy, did not smoke and maintained a regular fitness routine, it was most likely a false positive.

Two days later, a biopsy, pneumothorax and test results revealed a positive diagnosis for stage 1 lung cancer.

I was stunned. Lung cancer, of all things? I use my lungs regularly at high altitude and high intensity. They work fine.

Lung cancer stigma for nonsmokers
By the second day, I had already become familiar with the ubiquitous question: "Did you smoke?"

It is a logical question. We all know smoking causes lung cancer.

But when people ask this, it brings up a range of emotions from resignation to annoyance. Sometimes I find myself getting defensive of the three years I did smoke. It was part of the culture. Besides, that was more than 25 years ago. And, though my doctors don't know exactly what caused my lung cancer -- Secondhand smoke exposure? Some other toxins? Something else? -- they say those few years I smoked probably were not a factor.

Other times I feel compelled to educate my listener about the increasing numbers of nonsmokers who contract lung cancer.

Sometimes I gently remind my listener no one deserves an awful disease with low survival rates and tremendous suffering, even if he or she made poor choices in the past.

When my dad received his lung cancer diagnosis, I was emotionally devastated. However, if I am honest, my response mimicked the party line, "Well, I am not surprised. After all, you smoked two-plus packs a day for 57 years."

His lung cancer battle lasted 14 months. It was a hard road from surgery through chemotherapy. I helped him through the entire process, and amidst the hardships, our relationship deepened and evolved.

The reality is that lung cancer is a mass murderer on a global scale. According to the American Cancer Society, 13% of lung cancers are unrelated to smoking.

Even with my family history, I knew relatively little about this pernicious disease until recently. Like millions of others, I believed that lung cancer only affected smokers.

Changing the stigma surrounding lung cancer
Does it really matter if you smoked, were exposed to secondhand smoke, worked with toxins, lived in a radon house or randomly inhaled the wrong particles? Is anyone really in a position to claim that someone really deserves lung cancer? No, of course not.

We need to change the way the world looks at lung cancer. We need to build programs around awareness and educate the public, invest more money in research detection and therapies as well as support the promotion of healthy lifestyles and prevention. It is time for lung cancer to become as relevant in our culture as breast cancer. It is time to end the stigma. It is time for change.

Lung cancer is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our Lung Cancer Moon Shot.