Rare Mutations & Fusions in Non-Small Cell Lung Cancer | May 19, 2026 | Lung Cancer Living Room®

What does it mean to have a "rare" mutation in non-small cell lung cancer (NSCLC), and why does finding it change everything about your treatment? In this Lung Cancer Living Room® episode, host Danielle Hicks (Interim Co-CEO & Director of Patient Services, GO2 for Lung Cancer) leads a powerful conversation with researchers and patient advocates about the rare biomarker space, comprehensive biomarker testing, and the targeted therapies that are helping patients live longer than ever before. The panel breaks down what "rare mutations and fusions" actually means, walks through biomarkers like ROS1, RET, NRG1, EGFR, ALK, KRAS, BRAF, HER2, and c-MET, and explains why precision medicine depends on the right test at the right time. You'll learn the difference between DNA, RNA, and IHC testing, when liquid biopsy is enough (and when you still need tissue), why biomarker testing matters at diagnosis AND at progression, and what to do when treatment can't wait for results. Patient advocates Janet Freeman-Daily and Ilana Stromberg also share personal stories about diagnosis, fear, community, and refusing to be defined by a statistic. Whether you're newly diagnosed, living with lung cancer, or supporting someone who is, this conversation is built to inform you and give you hope. 🎙️ FEATURING: Danielle Hicks — Interim Co-CEO & Director of Patient Services, GO2 for Lung Cancer Andrew Ciupek, PhD — Associate Director, Clinical Research, GO2 for Lung Cancer Upal Basu Roy, PhD, MPH — Executive Director of Research, LUNGevity Ilana Stromberg — Patient Advocate; Co-Founder & Board Member, The Happy Lungs Project Janet Freeman-Daily, MS, Engr — Patient Research Advocate; Co-Founder & President, The ROS1ders 💙 NEED SUPPORT? The GO2 HelpLine is staffed by real people who can help you understand biomarker testing, find specialists, and navigate clinical trials — free of charge. 📞 1-800-298-2436 ✉️ [email protected] 🔗 HELPFUL RESOURCES: LungMATCH (free clinical trial & treatment navigation): https://go2.org/lungmatch Navigating Non-Small Cell Lung Cancer Handbook: https://store.go2.org/product/navigat... The ROS1ders: https://ros1cancer.com The Happy Lungs Project: https://www.happylungs.org 🔔 SUBSCRIBE for new Lung Cancer Living Room® episodes every month, featuring leading experts and patient voices. ⏱️ CHAPTERS: 00:00:00 Welcome & Tonight's Topic: Rare Mutations and Fusions 00:01:48 Meet the Panel 00:03:06 Andrew Ciupek, PhD (GO2 for Lung Cancer) 00:04:28 Upal Basu Roy, PhD, MPH (LUNGevity) 00:05:13 Janet Freeman-Daily (The ROS1ders) 00:06:29 Ilana Stromberg (The Happy Lungs Project) 00:08:20 What Is a "Rare" Mutation? (And Why Less Than 1% Still Matters) 00:10:31 Why Identifying Rare Mutations Changes Your Treatment 00:11:59 A Patient's View: Lung Cancer Before Targeted Therapies 00:14:35 Biomarker Testing 101: Why It's More Complex Than Ever 00:16:04 Where We Are Today: A Compressed Timeline of Progress 00:17:50 The Challenge of Finding Rare Biomarkers 00:18:09 When the First Test Is Wrong: A ROS1ders Story 00:19:45 Making Sense of the Tests: DNA, RNA, IHC & Liquid Biopsy 00:22:12 Why More Testing Means Tougher Decisions (Tissue & Timing) 00:24:14 When the Patient Educates the Doctor 00:26:24 How Much Should a Patient Really Know? 00:28:08 What to Ask Your Provider & Why the Educated Patient Lives Longer 00:30:12 Are We Testing Small Cell Lung Cancer Too? 00:30:42 When Treatment Can't Wait for Your Results 00:33:36 Why Your First Treatment Matters: Immunotherapy & Oncogenic Drivers 00:35:00 Brain Metastases at Diagnosis: Targeted Therapy vs. Radiation 00:36:13 Liquid Biopsy: When It's Enough, When It's Not 00:38:48 The Stress of Waiting — and the Support That Helps 00:40:09 Biomarker Testing at Progression: Why You Must Retest 00:44:09 "Cancer Is Desperate": Understanding Resistance 00:45:29 Audience Q&A: BRAF, Immunotherapy & NRG1 Fusions 00:47:14 Finding Your Community in the Rare Mutation Space 00:48:57 The Origin of The ROS1ders & the Power of Connection 00:53:18 Are Earlier-Stage Patients Joining These Groups? 00:54:42 The Future: Rare Biomarker Testing in Early-Stage Lung Cancer 00:56:34 Selpercatinib, ASCO Data & the Push Toward NGS 00:57:48 The Power of Clinical Trials & Why Participation Matters 00:59:02 What Do You Wish You'd Known? Advice from the Panel 01:02:04 "You're Not the Statistics" — Ilana's Story 01:03:18 Final Takeaways: Second Opinions, Community & Care Teams 01:06:10 Closing Thoughts & Gratitude 01:08:06 Upcoming Events: Gathering Hope & Next Living Room 01:09:48 Thank You & Sponsors #LungCancer #NonSmallCellLungCancer #NSCLC #RareMutations #BiomarkerTesting #TargetedTherapy #LungCancerLivingRoom #GO2forLungCancer #ROS1 #RETfusion #EGFR #ALK #KRAS #LungCancerResearch #PrecisionMedicine #ClinicalTrials #LungCancerAwareness #LungCancerSupport #PatientAdvocacy #CancerCommunity #LiquidBiopsy #TheROS1ders #HappyLungsProject #LUNGevity #LungCancerHope