What People Don’t Understand About NSCLC

Medically Reviewed by Neha Pathak, MD on December 10, 2021
4 min read

By Danielle Hicks, GO2 Foundation for Lung Cancer, as told to Kara Mayer Robinson

Believe it or not, with all the incredible advances that have been made in treating lung cancer, especially non-small-cell lung cancer (NSCLC), there are many misconceptions that still linger about this disease.

I believe it’s because there’s a lack of widespread education and understanding. This is not only in the lung cancer patient community, which includes people at risk and also those diagnosed, but also in the health care community.

As a lung cancer advocate and chief patient officer at the GO2 Foundation for Lung Cancer, I’ve spent 12 years working with patients, caregivers, physicians, nurses, and industry professionals.

I also have hands-on experience. My mother, Bonnie Addario, had lung cancer, so I have a personal understanding of the disease, different treatments, the emotional and physical experience, and what it’s like to be a caregiver for someone with this disease.

In my experience, these are several common misconceptions people have about NSCLC:

All lung cancers are the same.

About 84% of lung cancers are NSCLC. There are two main sub-types: squamous cell and adenocarcinoma. About 60% of cases of adenocarcinoma have been linked to specific mutations and have specific drugs to target them.

Not all lung cancers are the same, so it’s important to know your cancer to be sure you’re given the right treatment at the right time.

At the beginning, it’s imperative to receive comprehensive biomarker testing, or molecular testing. This testing looks for biological changes in genes or proteins that may be associated with your cancer.

We recommend that all patients diagnosed with NSCLC be tested so you and your team have all the information you need to identify the best treatment option for your individual cancer.

NSCLC only affects people who smoke or used to smoke.

Although most lung cancers can be linked to some smoking history, roughly 20% develop in “never-smokers.” Never-smoking lung cancer, or lung cancer where patients never smoked, is still the fifth-largest cancer killer in the world. Radon, environmental factors, and family history also play a role in developing NSCLC.

The biggest potential problem with this misinformation is that patients and doctors may not be thinking about lung cancer in never-smokers, even if they have symptoms. Lung cancer doesn’t discriminate and can strike anyone, at any age, regardless of smoking history.

NSCLC is a death sentence.

Advances in treating NSCLC include targeted therapies, which target specific driver mutations, and immunotherapies, which generate an immune system response.

Treatments in targeted therapy have exploded in the last decade. Stage IV NSCLC patients are receiving life-extending therapies well beyond what was previously the case. It’s a result of advances in biomarker testing and corresponding targeted drugs.

New chemotherapy combinations and the use of palliative or supportive care are also extending lives, as well as improving symptoms and quality of life.

If you look at current rates of survival, they may be misleading. The current survival rate data for NSCLC is severely behind. It’s not a good representation of actual survivorship, given all the new and rapidly emerging therapies for NSCLC in particular.

There are no screening or early-detection tools to diagnose non-small-cell lung cancer early, when it’s most curable.

The situation has changed in the last few years. In 2015, the Centers for Medicare & Medicaid Services (CMS), approved low-dose tomography scans for lung cancer screening. These are also known as low-dose CT or LDCT scans.

Earlier this year, the U.S. Preventive Services Task Force expanded its recommended qualifying criteria for lung cancer screening. That’s nearly doubled the number of at-risk people who qualify for screenings -- roughly 16 million people living in the US.

The new screening recommendations and guidelines are for high-risk adults between the ages of 50 and 80 years old, who have a history of smoking 20 packs a year or have quit smoking within the last 15 years.

But even with these new criteria, right now only about 4% of the at-risk population is being screened. We’re trying to generate awareness in the at-risk population, as well as within our primary care physician community.

The more awareness there is, the more screenings there will be. The more screenings we have, the more likely it will be that people are diagnosed at earlier stages, when NSCLC is most curable