Why Lung Cancer Stigma Hurts

It's Lung Cancer Awareness Month, and I wish more people knew why the lung cancer stigma bothers so many of us. First, let me explain what the stigma means to me.

Defining "lung cancer stigma"

The lung cancer stigma is the assumption that if you have lung cancer, you are or were a smoker. The implication is that you got what you deserved. After all, doesn't everyone know that smoking causes cancer? So when I was diagnosed with lung cancer I heard the question over and over and over. Almost every single person asked me, "Did you smoke?" No, I didn't. The stigma is that lung cancer is like no other cancer diagnosis. People view lung cancer differently because of the assumed connection to smoking.

Why the stigma bothers me

What bothered me then and still bothers me is that in no other cancer diagnosis are people made to feel guilty about their disease. If you tell someone you have breast cancer, prostate cancer, colorectal cancer or any other cancer the reaction is usually one of empathy or sympathy. People will say, "Oh I'm so sorry to hear that."

In my case even today, many years later if I tell someone I had lung cancer, they say "Oh wow, did you smoke?" It's estimated that up to 20% of people who die from lung cancer never smoked.¹ That means that as many as 30,000 who never smoked died from lung cancer last year. Nonsmokers killed by lung cancer as its own category would make it one of the top cancer killers. And yet the stigma still persists.

Anyone can get lung cancer

Anyone can get lung cancer -- smokers or nonsmokers. And even if you did smoke, I don't think you "got what you deserved" if you have lung cancer. I just wish people knew that it hurts when you are meant to feel that it's your own fault that you have cancer. While I acknowledge that smoking causes many health problems, including lung and other cancers, it is not what should define a person with a lung cancer diagnosis.

With genomic (or biomarker) testing we now have the ability to identify unique characteristics of tumors, such as the mutation that caused the cancer. Mutations such as EGFR, ROS1, and ALK can be found in lung cancer patients whether they smoked or not.² If anyone can get lung cancer, why is it any different than other cancers?

How you can help end the stigma

When I tell people I had lung cancer and they ask if I smoked, I usually don't show my displeasure at the person for asking the question. But I do politely point out that it's not just a smoker's disease and it's wrong to assume this is the case. If you are newly diagnosed with lung cancer and you hear this question, you can make this point to people however you are comfortable. And the general public can help too by being sensitive to the fact that lung cancer can affect anyone, so don't ask that question about whether someone smoked or not. Just as you shouldn't ask someone with colon cancer "Oh, did you eat a lot of red meat?"

Advocacy organizations need to be better

And organizations like the American Cancer Society and the American Lung Association can do better as well. I don't mind the campaigns to encourage people to quit smoking or never start smoking. But I'd like to see a bigger component of education and advocacy be about getting checked if you have symptoms of lung cancer like a persistent cough.

I lost a friend to lung cancer who never smoked but had a cough for a few months and didn't think to get checked. He passed away 3 weeks after he finally did go get checked. He was 45 years old.