It can come as a shock to learn you have lung cancer if you rarely or never smoked. You’re not alone. Each year in the U.S., 20,000 to 40,000 people without a history of smoking are diagnosed with lung cancer. Causes of lung cancer in this group differ from causes of other lung cancers, and patients are often younger.

The OHSU Knight Cancer Institute offers care designed for lung cancer in younger adults and people without a history of smoking (have smoked fewer than 100 cigarettes in their life). You’ll find:

• A team of experts who provide treatments and services tailored to your medical and other needs
• A nurse navigator who guides you through appointments and helps solve problems
• Advanced tests to find the best treatment for you
• A specialty pharmacy with expertise in lung cancer drugs
• Help for fertility, financial and caregiving needs
• Mental and emotional support

Your care team will make it a point to understand your concerns before anything becomes a crisis. We use the latest science to match your treatment to your specific cancer.

Why do patients who didn’t smoke get lung cancer?

People who rarely or never smoked, and younger adults, may ask, “Why me?” Lung cancer in this group is often caused by gene changes and factors besides smoking. Lung cancer can affect anyone, and the cause is rarely something you could have controlled.

Lung cancer types

There are two main types of lung cancer.

Small cell lung cancer: This type makes up about 10% to 15% of lung cancers. It is most often found in current or former smokers. It tends to grow and spread more quickly than non-small cell lung cancer.

Non-small cell lung cancer: This type makes up about 85% to 90% of lung cancers. It occurs in people with or without a history of smoking and has several subtypes. Adenocarcinoma is the most common, especially among people who rarely or never smoked.

Risk factors

Risk factors for lung cancer in people without a history of smoking include:

• Age: Patients who didn’t smoke are often younger than those whose cancer is linked to smoking. Many of those diagnosed without a smoking history are younger than 55.
• Sex: Being female increases risk.
• Race: People with Asian ancestry are at higher risk.
• Environment: Exposure to high levels of air pollution or radon gas, which can build up indoors, increases risk. So does high exposure to asbestos, arsenic in drinking water, or indoor cooking fumes.
• Secondhand smoke: High exposure to other people’s smoking increases risk.

It is important to remember that risk factors are not predictors. We often do not know the exact cause of a cancer.

Survival rates

Survival rates among patients who didn’t smoke have risen over the past decade.

When lung cancer is found early, before it has spread, the average 5-year survival rate is around 61%.

The best way to find lung cancer early is through screening. While lung cancer screening focuses on people with a history of smoking, you can ask your doctor about screening if you have symptoms that don’t go away:

• A constant cough
• Shortness of breath
• Chest pain
• Unplanned weight loss

Even when lung cancer is found later, many patients can live well for years with advanced treatments.

What to expect at your first visit

Your first visit is called an intake appointment. A nurse navigator will talk with you about your medical and other needs. You may get referrals to:

• Genetic counseling, if you have a family history of cancer or early disease
• Integrative medicine, to help manage side effects from treatment
• Psycho-oncology, to support your mental and emotional health
• Reproductive endocrinology, if you want to save your fertility
• Social work, if you have financial or caregiving concerns

Diagnosis and testing

We use the latest techniques to diagnose lung cancer. You may have a scan, biopsy, bronchoscopy or other tests.

For younger adults and people without a history of smoking, we also do biomarker testing. This test looks for a biomarker: a sign in your body, like a gene change. You may also hear biomarker testing called molecular testing or next-generation sequencing.

About 80-90% of lung cancers in people without a history of smoking carry gene changes called driver mutations. Biomarker testing can identify which mutation is driving your cancer.

Biomarker testing can be done as a biopsy or a blood test:

• Biopsy: We take a tiny bit of lung tissue to look at under a microscope.
• Blood test: We draw a little of your blood. This can often identify gene changes without needing more tissue. We may repeat this during treatment to check how well it’s working.

You’ll have your tests reviewed by a group of specialists called a tumor board. They pool their expertise to figure out the best treatment for you.

At the Knight, treatment for lung cancer in people who rarely or never smoked starts with drugs called targeted therapies. These drugs act on driver mutations to slow or stop cancer growth.

We can match targeted therapies to these common mutations:

• ALK
• BRAF
• EGFR
• HER2
• KRAS
• MET
• NRG1
• NTRK
• RET
• ROS1

You may get targeted therapy as a shot or by IV. Most targeted therapies are given as pills called tyrosine kinase inhibitors, or TKIs. TKIs have helped many patients live longer, with better quality of life. Sometimes, though, a TKI stops working. This is called resistance. If this happens, your care team will work with you to find another targeted therapy to try. Many patients move through several effective targeted therapies over years.

Your care team may also connect you with clinical trials that are testing new ways to treat lung cancer. These include trials of new targeted therapies for hard-to-treat lung cancer.

Resources

• Lung Cancer Among People Who Never Smoked, Centers for Disease Control and Prevention
• ALK Positive, patient organization
• EGFResisters, patient organization
• LUNGevity Foundation
• ROS1ders, patient organization