The world of cancer is filled with jargon and complicated words and concepts. Lung cancer is no different. Physicians, researchers, advocates and patients each have their own way of saying things, which can lead to the lung cancer community talking about the same topic using several different terms. It can be confusing. This has been the case for biomarker testing, which has also been called molecular, genomic, genetic, and tumor testing—just to name a few of the terms. This difference in wording isn’t doing lung cancer patients any favors.
The lung cancer field has experienced tremendous growth around precision medicine. After decades of chemotherapy and radiation being the lung cancer standard of care, researchers have made great progress identifying certain markers in lung cancer tumors and developing drugs to target those markers. Oncologists have more tools in their toolbox than ever before to treat metastatic lung cancer, and particularly non-small cell lung cancer (NSCLC), including targeted therapies and immunotherapy. But to determine the best treatment for the patient, the oncologist needs to know more information about the makeup of the tumor through biomarker testing. Unfortunately, there are still many eligible patients who are started on treatment without having the makeup of their tumor looked at through biomarker testing, which means they are not taking advantage of the advancements in precision medicine to personalize their treatment to their specific type of lung cancer.
This has caused concern for lung cancer advocacy organizations that are engaged in helping empower patients to talk to their doctors to make sure their tumor makeup is considered before beginning treatment. A key element of the education and awareness efforts is ensuring that all patient advocacy groups, professional societies and industry experts use consistent terminology in discussing the importance of testing with patients. One person helping to lead the charge of unifying our terminology is Nikki Martin, Director of LUNGevity’s Precision Medicine Initiatives. I spoke with Nikki about the efforts to help codify the language around biomarker testing (read on to learn why this is the preferred terminology).
What is some of the language you have seen used to describe lung cancer biomarker testing?
There are so many terms in use, which is why it has been very important to get everyone to be more consistent using a plain language and patient-centric term. The most commonly used terms are tumor testing, molecular testing or molecular profiling, genomic testing, mutation testing, DNA sequencing, genotyping, and biomarker testing. You’ll hear “testing” and “profiling” used interchangeably as well.
The preferred term that the patient advocacy community uses to educate patients and caregivers is “biomarker testing.” The term “biomarker testing” tells someone what it is that’s being tested for. Biomarker testing will reveal details about the biomarkers in the patient’s cancer. This is important information that will help the patient work with their doctor to make a personalized treatment decision based on the biomarkers they have, and sometimes don’t have, in their cancer.
What information does someone learn from biomarker testing?
When we say “biomarker testing” we mean testing for driver mutations and immunotherapy biomarkers such as PD-L1 or tumor mutational burden (TMB). You can think of a driver mutation as an abnormality in the gene of a cell that can make it grow out of control. The idea is if you can take a drug that “targets” what is responsible for uncontrolled cell growth, you may be able to help control the cancer. The biomarker PD-L1 is a protein that provides key information about how a patient may respond to immunotherapy, a type of treatment option.
Asking for “comprehensive biomarker testing” is especially important for someone with lung cancer as it signals to your provider that you want to be tested for multiple biomarkers at one time. The reason why it’s important to have comprehensive biomarker testing instead of testing for only one, two or three biomarkers at a time is because of the clinical advancements that have been happening in lung cancer. Many people don’t know that lung cancer is at the forefront of precision medicine. There are now at least 15 FDA-approved targeted therapy drugs for NSCLC patients, and several more are in clinical trial for NSCLC and small cell lung cancer. Because of this, having comprehensive biomarker testing at diagnosis, and later at progression and recurrence is critical.
What has the lung cancer advocacy community done to streamline the language around biomarker testing?
The lung cancer community started researching this in 2015. LUNGevity Foundation conducted an audit of patient education materials about testing after seeing how confused patients were by the multiple terms. We learned there were 17 different terms being used to educate lung cancer patients about biomarker testing, but none of the terms dominated. So a group from the lung cancer community got together to discuss the audit results and see what term people preferred. Biomarker testing was a strong favorite. That summit in 2015 was the start within the lung cancer community to start to use the term “biomarker testing” more consistently. Fast forward a few years and more organizations and oncologists have written papers and published on the need to use consistent terminology and adopt the term “biomarker testing” for lung cancer patient education.
Most recently LungCAN (the consortium of lung cancer patient advocacy groups) formed the Biomarker Testing Awareness Project (BTAP), which developed a pledge for lung cancer stakeholders to sign agreeing to use “biomarker testing” or “comprehensive biomarker testing” when educating patients. To date, 28 organizations have signed on to the pledge, including the American Lung Association.
What does the future look like for this project?
One exciting development is the term “biomarker testing” is being adopted by other patient advocacy groups in cancer communities like breast, colorectal and prostate cancer and many more. There is a consortium of nearly 50 patient groups, medical societies, and industry partners committed to using common terms like “biomarker testing” so we can help eliminate patient confusion about testing by using a consistent, common language. The next big hurdle is encouraging more professional societies and guidelines committees to use “biomarker testing” with their constituents. Ultimately, we would like all healthcare professionals speaking with one voice about testing to lung cancer and other cancer patients. Having a unified voice and message will help the medical community and patients achieve common understanding about the impact that testing has on personalizing the patient’s care and treatment plans.
Visit www.lung.org/biomarker-testing to sign up to be alerted when new biomarker resources are available. The first 200 people to sign up get a free American Lung Association face mask.
Many thanks to Nikki Martin for sharing her expertise.
Blog last updated: August 28, 2020