Must Know Information for Newly Diagnosed Lung Cancer Patients
When I was first diagnosed, understanding the terminology was like learning a foreign language. Bronchoscopy. Fine Needle Aspiration. Pulmonologist. PET scan. CAT scan. VATS. Mutation. ALK Positive. EGFR. RET. MET. PD1. PDL1. Initially, that new language was overwhelming.
Making informed treatment decisions
Those early days are extremely important. Things such as understanding the specifics of our disease, including the type and stage, knowing where to get the best care and being aware of all our treatment options. Yet, many of us are uninformed and ill-equipped to make informed decisions.
We may not even understand the difference between chemotherapy and targeted therapy or a traditional thoracotomy versus robotic surgery.
Before we have even had a chance to fully grasp the impact of those words, “You have lung cancer,” we must make major decisions about our treatment.
Understanding lung cancer terms
It’s been 14 years since I first heard those words. Since then, I have mastered the language, of course, although occasionally new terms crop up. Sometimes different terms describe the same thing.
One easy and harmless example of that is the term CT scan versus CAT scan. Both mean the same type of diagnostic imaging, computed tomography or computed axial tomography.
However, another example of using different terminology to describe the same thing, may not be harmless. Research breakthroughs have led to lung cancer treatment options that can potentially make the difference between life and death. Patients engaged with the lung cancer advocacy community know this only too well. Some of them learned it the hard way, though. They received harsh chemotherapy that did not effectively kill their tumor. Eventually, it was discovered that they had a certain biomarker that responded to targeted therapy.
Comprehensive biomarker testing
There are many biomarkers and, frankly, many patients will not have what we call an actionable biomarker. But those who do may receive personalized anti-cancer treatment. The only way to know is to test. Unfortunately, not all patients who may benefit from targeted therapy are even being tested.
One of the problems contributing to the lack of testing is a matter of semantics.
A team of lung cancer advocates from several organizations are working together to raise awareness about the importance of comprehensive biomarker testing. The sooner newly diagnosed lung cancer patients learn about comprehensive biomarker testing, the better.
Lung cancer advocacy leaders recognize that there is confusion surrounding the different terminology regarding comprehensive biomarker testing. Some of the commonly used terms used are genetic testing, mutation testing, genomic testing, molecular profiling and so on.
Using consistent language can help everyone
There is a simple solution to this problem: Use consistent language.
Long-term advocates, who have been in the lung cancer arena since before these terms were first used, understand the various terminology and may use them interchangeably. More importantly, they know the importance of comprehensive biomarker testing.
However, we also recognize the importance of applying consistent language to comprehensive biomarker testing in the hopes of more patients being tested. Frankly, even some medical providers could benefit from the use of consistent language.
Some of the terms used to describe comprehensive biomarker testing are even incorrect. For example, genetic testing is not biomarker testing. Biomarker testing encompasses testing not only for targetable mutations but also testing for potential responsiveness to immunotherapy.
The goal of educating advocates, patients, caregivers and health care providers about biomarker testing is to reduce confusion surrounding testing and encourage testing for patients diagnosed with NSCLC.
After all, learning the new language of lung cancer should be no more difficult than necessary.
Are you raising children during your lung cancer journey?