EP 10: Lung Cancer Terms No One Explains (But You Need to Understand to Survive)

When you’re diagnosed with lung cancer, the language moves fast — and no one stops to translate.

Stage. Stable. Progression. Biomarkers. Standard of care.
These words show up immediately, and misunderstanding even one of them can change how you feel, how you decide, and how much fear you carry.

In this episode of Lung Cancer Strong, I break down the lung cancer terms I wish someone had explained to me slowly and clearly when I was first diagnosed. Not from a textbook — but from lived experience.

This episode is for:

• Anyone newly diagnosed with lung cancer
• Caregivers trying to keep up with medical conversations
• Patients who want to advocate for themselves without panic
• Anyone overwhelmed by scan reports, research articles, or oncology appointments

Understanding your cancer isn’t optional.
It’s how you reduce fear, ask better questions, and make informed decisions.

Transcript

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This podcast is strictly for informational purposes and does not constitute medical advice, diagnosis, or treatment. Always consult with your oncologist, doctors, and medical team for questions specific to your own health diagnosis and treatment. If you're listening to this, you or someone you love has just heard the words. You have lung cancer right now. You might feel scared, overwhelmed, shocked, or even numb. I know because I've been there. Hi, I'm Tina Powell, stage four, lung cancer survivor, thriver and patient advocate. And when I was diagnosed on January 16th, 2023, I had a thousand questions and nowhere to turn for real answers from those who have lived it. That's why I created lung cancer strong. Here you'll find things I wish I had from day one. Real stories, honest answers, and the tools and hope to face every moment ahead. Here we get real about treatment, fears, setbacks, small victories, and finding purpose even on the hardest and the most crushing of days. Here we get strong through information, inspiration, and community, and most of all, we get through it together because this is a place of true connection, compassion, and unfiltered strength. So whether you're newly diagnosed, fighting with everything you've got or standing by someone you love, this is your invitation to live intentionally, powerfully, and with hope. One breath, one story one day at a time. Welcome to lung cancer Strong. When you're diagnosed with lung cancer, the language moves fast and no one stops to translate. I remember having conversations with my oncologist thinking I understood everything and realizing later that I didn't. In this video, I'm breaking down the lung cancer terms. I wish that someone explained to me early on because if I've learned anything as a three-year cancer survivor, thriver in patient, it's this understanding your cancer isn't optional is how you advocate for yourself and make smart decisions without living in constant fear. Doctors don't use complicated language to confuse us. They use it because it's normal to them. But when you're the patient, every word and every term matters because misunderstanding, even just one of them can change how you feel, how you decide, and how much fear and anxiety you carry. So today, I'm not going to overwhelm you, but I am going to translate. These are the lung cancer terms that I wish that somebody explained to me slowly, clearly, and without assuming that I already knew Term number one stage. Let's start with the word stage because this is usually the first word that people hear, and often the one that creates the most fear. In fact, one of the most frequently asked questions people are going to ask you is, oh, what stage are you? When I learned my stage move from two B to four, I was freaked. I thought that it was a countdown, like a clock that had started, but that's not what stage actually means. Stage describes where the cancer is located in your body. It does not describe how you will feel tomorrow, and it does not predict how your individual body will respond and how long you have to live. Two people can have the same stage and have very different lives and even have the same type of cancer. I didn't understand that at first. I heard a number and assumed that it was my future. Stage isn't a timeline, it is a map, and once I understood this, everything else made more sense, including the next word. Term number two, stable response progression. These three words show up in scans and reports and appointments, and they sound neutral, but they are emotionally loaded. Here's what they actually means. Response means the cancer is shrinking. Progression means it's growing or spreading, and stable means that it's not changing. When I was new to all this, I thought that stable meant that nothing was happening like we were stuck. But later I learned that actually the word stable can mean that everything is working. That's the word that changed how I feel about my scans. Once I understood all of these terms, stable response progression, it made looking at my reports a lot easier and I stopped panicking every time. I didn't hear the word shrinking term. Number three, progression free survival, PF, s and overall survival os. After reading through articles and research on PubMed, I started hearing another phrase, progression-free survival. PFS. This does not mean how long one actually has to live. It means how long a treatment keeps from the cancer from growing or spreading. That distinction really matters because some treatments work for a period of time without being permanent, and that's okay, and that's really important for you to understand as a patient. Overall. Survival OS is another term that you need to know. Overall survival is a little bit different. It's how long people live, but it's measured across groups, not individuals, and it reflects many variables, not just treatment. So once I understood the difference between progression-free survival and overall survival, I stopped trying to predict my own future from statistics, from reading, research reports, et cetera. Remember these statistics describe general populations. They don't necessarily discuss outcomes and specifically outcomes for you and for your type of cancer. Term. Number four, no evidence of disease. Ned, this one sounds like the best words that you could possibly hear. Ned means no evidence of disease. What it does not mean, as I came to figure out the hard way, Ned does not mean cured. I came to understand this firsthand when my earlier scans showed no evidence of disease and I thought that it was okay. What Ned actually meant was that right now nothing is visible on the scans that we're seeing. It's a snapshot. It's a moment in time. It's not a promise that you'll be like that forever. And I wish that I had understood that early not to take away the hope, but protect myself emotionally. Ned is one of the most important words in your cancer vocabulary, and I wish that for you and I wish that for me. Term number five, biomarkers and mutations. This was the most confusing part for me in the beginning. When oncologists and the medical team and your doctors start talking about biomarkers or mutations, it can sound very abstract and confusing like you contracted something. But when it comes to cancer treatment, this information biomarkers and mutations are essential because certain medicines have been developed to treat different subgroups of lung cancer. So instead of treating lung cancer like one main single disease biomarker testing looks for genetic mutations, protein changes, and other signals inside the cancer cells. So these biomarkers help to doctors to determine which treatments are likely to work, which treatments probably won't work for your type of cancer, whether or not that you would be eligible for targeted therapy or immunotherapy and personalizing your treatment plan. So in a nutshell or simpler terms, biomarkers are clues about how your cancer behaves, and a mutation is how the cancer cells are wired. That's why two people with the same type of lung cancer can receive completely different treatments and why comparing journeys are so misleading. So all this to say, please make sure that you have a conversation with about biomarkers, biomarker, testings and mutations, especially if you're new to lung cancer or if you've just received your diagnosis. Term number six, lines of treatment. You'll often hear your doctors talk about first line, second line, or third line treatment. At first, this terrified me. I thought it meant running out of options. What this actually means is a sequence, doctors plan treatments the way chess players plan moves because they're thinking ahead, which is exactly what they need to do for you. So hearing next line no longer makes me panic. Now I hear strategy and reassurance that no matter what, there are still different options available to me. Term number seven, standard of care. If there's one phrase that comes up a lot, it's standard of care and it's important that you know what it means. When I first heard standard of care, I thought that it meant best options, which is partially true. What I didn't know was the more medical definition of what standard of care actually means. It's the treatment approach that's most commonly used right now, but it's based on current evidence. Keyword here is evidence gained through meticulous scientific research. So standard of care is built from large clinical trials, peer-reviewed research, national and international treatment guidelines, and what has been shown to work for patients like you and me. With the same cancer type stage and biomarkers. It doesn't mean necessarily it's the newest, it doesn't mean that it's the only path and it doesn't mean that it's right for every single person. Standard of care is not the same for everyone. It changes are based on your specific type of cancer in stage, biomarkers and mutations, prior treatments, and your overall health. So standard of care is the best known treatment for you right now, but you still have to work with your oncologist to figure out what that means for you. Term number eight, active surveillance. This phrase scared me almost more than any other watch and wait. Active surveillance, it sounded like we were absolutely doing nothing, but what it actually means is monitoring closely instead of acting immediately. That could mean waiting before scans before you take action. It could also mean keeping a regimen of scans and active monitoring, for example, every three months, every six months, or every year. So sometimes with lung cancer, the best decision isn't to rush into a certain procedure or surgery, but more importantly, it's to make sure that you have all of the facts before making important decisions like surgery. For example, Term number nine, chemotherapy, immunotherapy and targeted therapy. Depending on your specific type of lung cancer, you are going to hear these three words a lot. They're all related and three distinct waves to treat cancer. So chemotherapy or chemo works by attacking fast-growing cells, but also attacking some healthy ones. Chemo can be delivered through an iv, a port, a PICC line, orally with pills or by an injection. So Cisplatin and Rex are examples of types of chemo. Immunotherapy helps your immune system recognize and attack the cancer. The most common way that immunotherapy is administered is by iv. So Keytruda is a common immunotherapy you probably hear that has been used to treat lung cancer and other cancers too. So targeted therapy treats cancer based on a specific mutation or target found in your tumor through biomarker testing. So instead of attacking all fast-growing cells like chemo, it targets the driver of the cancer. So the most common way targeted therapy is delivered is through oral, through a pill through your mouth. Tagrisso or Osim TIB is a targeted oral medication for adults with EG ffr, non-small cell lung cancer like Exon 21, L 8 5, 8 R, and others that you may have heard of. So it's important to note that one isn't automatically better than the other. Right? Treatment really depends on the biology of your specific cancer, and that's how your oncologist will determine the best treatment plan for you. So there you have it terms that you definitely need to know to help you make smart decisions about you and your cancer treatment. So if this video helped you even just a little, it tells me how necessary that these conversations are. So please know how much I appreciate you listening, you subscribing and you writing to me at tina@lungcancerstrong.com, sharing your own personal lung cancer journeys. They are so inspiring and meaningful to me. So in the next video we're going to talk about how to choose an oncologist and questions you might want to ask. So I hope that you'll join me. One breath, one story one day at a time. This is Lung Cancer Strong. Thank you for joining me today on Lung Cancer Strong. Remember, this podcast is strictly for informational purposes and does not constitute medical advice. Always talk to your oncologist, doctors, and healthcare team about your individual situation. If you'd like to reach out to me or share your thoughts, please email me at tina@lungcancerstrong.com allow 48 hours for or apply. And don't forget, you can find us on YouTube and on all the major podcast outlets. Hit subscribe so you never miss an episode and get notified when something new drops one breath, one story one day at a time. This is lung cancer Strong.