Community Views: Learning About Biomarker Testing

When people receive a lung cancer diagnosis, they enter a new world. That new world includes screenings, treatments, lifestyle changes, and unfamiliar terminology that can be confusing and overwhelming. As precision medicine continues to grow, so does awareness of lung cancer biomarker testing.

As part of our 4th Annual Lung Cancer In America survey, we explored how and when people with lung cancer learned about biomarker testing. More than 800 people with the condition completed the survey and provided a unique look at tumor profiling. Following the survey, we also turned to community members on our Facebook page and asked them to share their experiences with biomarker testing.*

Most are familiar with some lung cancer terminology

The language of lung cancer can be foreign to the newly diagnosed. In the survey, most respondents were familiar with at least some common lung cancer terms. Nearly 60 percent of respondents have heard of biomarker testing.

The most recognizable words involved treatment:

• 87 percent have heard of immunotherapy
• 74 percent are familiar with targeted therapy
• 58 percent have heard of biomarker testing

Respondents are unsure about the tests they have had

A majority of respondents had some knowledge of biomarker screenings, but less than 10 percent can say they have had a biomarker test. Nearly half of the survey takers do not know if they tested positive for a genetic mutation. About 20 percent of respondents have not had any genetic mutation screening.

• 49 percent do not know if they tested positive for a genetic mutation
• 18 percent have not had biomarker testing

Among those who have had biomarker screenings, the most common genetic mutation was the EGFR mutation.

• 14 percent have EGFR mutations
• 9 percent have ALK rearrangements
• 3 percent have T790M mutations
• 2 percent have KRAS mutations

Knowledge of precision medicine and PD-L1 screening have room to grow

Even though precision medicine has seen big growth in recent years, only about 20 percent of survey respondents were familiar with the term. Less than 25 percent of respondents used personalized therapy as their first treatment option.

• 21 percent were aware of precision medicine
• 13 percent used immunotherapy as their first treatment
• 9 percent used targeted therapy as their first treatment

A specific type of biomarker profiling, PD-L1/PD1 protein testing, can indicate whether or not a tumor will respond to immunotherapy. Awareness numbers dropped when people with lung cancer were asked about PD-L1/PD1 testing. Around 30 percent of respondents have not been tested for PD-L1, and about 50 percent do not know if they were tested for a PD-L1 expression.

• 38 percent were familiar with PD-L1 or PD-1 testing
• 49 percent do not know if they had PD-L1 testing
• 29 percent have not been tested for PD-L1

Disparities in awareness of biomarker testing

Some survey respondents shared that they first became aware of genetic mutation testing on their first visit to an oncologist, while others learned about biomarker testing from online forums, support groups, and health websites including LungCancer.net. Some people with lung cancer underwent procedures and surgery before learning about biomarker testing.

Responses from community members on our Facebook page reflect the different experiences people have with testing. We asked members to answer: How/when did you learn about biomarker testing?

“From my oncologist during the first visit. He wanted the testing done before any definitive treatment plan was determined.”

“From my oncologist on the first visit as well.”

“As soon as I read about it, I asked the doctor to have it done. I am concerned that our oncologist never mentioned it.”

“From this website, then my oncologist.”

“I learned on an internet group like Inspire. My chemo had failed, I asked my oncologist for Foundation One testing. MET genetic marker was identified and started Xalkori. That was 6 years ago.”

“After my lung surgery.”

“My pulmonologist, when he did my bronchoscopy.”

*Member comments are based on personal preference and experience and have been edited for clarity.

The 4th Annual Lung Cancer In America survey conducted online from January through June 2020. 804 people completed the survey.