EP 8: Stage 4 Lung Cancer Survivor: What I Learned in 3 Years

Three years ago, I was diagnosed with lung cancer.
I didn’t know what the next three months would hold — let alone three years.

In this episode of Lung Cancer Strong, I’m sharing the most important things I’ve learned in three years of living with stage 4 lung cancer — not as medical advice, but as lived experience from the patient perspective.

These are the things I wish someone had told me at the beginning:

·       What really matters (and what doesn’t)

·       How to protect your mindset

·       How to advocate for yourself

·       Where to find real, credible information

·       Why long-term survival is possible

If you’re newly diagnosed, supporting someone you love, or have been living with lung cancer for years — this episode is for you.

Helpful Resources Mentioned in This Episode

• PubMed (NIH Biomedical Research Database)
  https://pubmed.ncbi.nlm.nih.gov
• ClinicalTrials.gov
  https://clinicaltrials.gov
• https://go2.org
• https://www.lungevity.org
• https://www.whiteribbonproject.org
• https://www.lung.org 
• https://egfrcancer.org
• https://alkpositive.org
• https://exon20group.org
• https://younglungcancer.org
• https://www.iaslc.org
• https://upstage.cancer.gov
• https://thepatientstory.com
• https://nutritionfacts.org/audio
• https://www.joelosteen.com/podcast
• Radical Remission – Kelly A. Turner, PhD
• Radical Hope – Kelly A. Turner, PhD
• Becoming Supernatural – Dr. Joe Dispenza 
• Will to Live – Paul Seyfirth
• Living with Terminal Cancer – William E. Schuette
• Cured – Jeffrey Rediger, MD, MDiv

Transcript

0:00

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. Three years ago I was diagnosed with lung cancer. At the time, I didn't know what the next three months would hold, let alone three years. Yet here we are three years later on my third year cancer anniversary. I know something I didn't know. Then there's more possibility, there's more progress, and there's more long-term hope than most patients are ever told at the start. Today I want to share the five most important things that I know now, not as medical advice, but as lived experience through the patient's perspective. The things I wish someone would've told me when I was first diagnosed. It's been a hard road, but I'm still here and if you're watching this, I want this for you too. Whether you're newly diagnosed or you've been fighting this for years, stay with me until the end because what I'm sharing today isn't talked enough, especially for new patients, but it matters if you're going to keep on going and give this everything you've got. This is lung cancer strong. Everyone's journey is different. What works for someone else may or may not work for you. I found this to be true early on when I went on and consulted with an alternative doctor who put me on Ivermectin and Menendez all, not only did those two medications not work for me, but they caused toxicity in my liver that was extremely damaging to my case. I also tried certain diets that I found other cancer support groups we're talking about keto for cancer, vegetarian, SOS diet. I felt myself running early on from thing to thing to thing to thing, including the diets, even certain medications that I thought that were going to work for me. I was on Tagrisso. However, I was only on Tagrisso for less than a year while I found certain other patients were on it for years and talked about it working for them. So again, this may or may not work in your favor. What works for somebody else, even if you have the same type of cancer, we are all uniquely different and that is one of the most important things that I could tell you early on in your cancer journey. Don't be like me and get caught in a rabbit hole thinking that because you have this type of cancer, the same as somebody else, that exactly what they're doing is going to work for you. We are our own unique person and people and what's going to work for us is going to be our own situation, so please keep that in mind. Another thing I want to talk about is limiting your exposure as it comes to other people, especially in Facebook groups. One of the things that happened to me early on is I found myself going down a very dark hole. I joined certain Facebook groups and found that I got sucked in to a lot of the negativity and people posting negative situations, negative situations that involved my type of cancer, which again, I am here three years later celebrating my third year cancer anniversary. If I had let those situations rent space in my brain, I don't know that I can honestly say that I would have the same mindset and the same outlook and the same positivity that I have right now. Be mindful looking at people who have the same type of cancer as you do. It doesn't mean that their experience is going to be your experience, so please keep that in mind. Not only is our unique journeys different, but you'll find and it's so important to find what works for you, and part of that is what restores you, what brings you joy? What are some of your non-negotiables as it relates for maintaining your health and wellbeing? For me, I can speak of three years later, acupuncture has been a tremendous blessing. As a matter of fact, I try to do acupuncture once a week. Addressing my mental health and working with a therapist has also been a life-changing thing. We've done EMDR to address scan anxiety. We've talked about different issues. She's recommended certain books and things that I wouldn't have normally read or have gone to or information that I would've sought out. So that mental health component is really important and the last thing I want to say about that, about learning what works for you is even your work for me, you guys, I love my work. Unfortunately, I had to adjust my work schedule slightly, but I really had to think about the things that I love doing as part of my work. That means going to the office, that means being with people, traveling, speaking, and doing the things that I love and bring me life in vitality. Whatever that is for you, your journey is uniquely different, so please figure out what those things mean for you and what you need for your wellbeing. That's number one. Learning the lung cancer lingo is an absolute necessity. Definitions, acronyms, lung cancer, shorthand. When I was first diagnosed, there were terms and things that I didn't know the difference for. Non-small cell lung cancer, EGFR, exon 21 and medical jargons such as standard of care, first line therapy, adjuvant therapy, I don't even know if I said that right, and the difference between chemotherapy, radiation, targeted therapy, immunotherapy, and there is so much medical jargon out there. It is your responsibility as a lung cancer patient to figure out what all of these things mean. Yes, we will absolutely have it at a future episode. All of the terms that you need to know, we'll call it lung cancer basics one oh one. I'll make sure that we record a future episode on that, but please learn the lingo. You don't have to learn it in all in one day, but start to consume and get yourself familiar with it. Chat GPT could be a great source. Google can continue to be a great resource. YouTube also too a great resource for information about making sure that you learn the medical lingo. It's not a nice to have. It is a need to have. Also, when it comes to arming yourself with information, I wish that somebody would have told me about PubMed early on in my diagnosis. Unfortunately, I had to learn that myself. No oncologist talked about it, no doctor talked about it. I learned it myself by taking myself to a event called the Hope Summit. Here's what I can tell you about PubMed. I'll put a link because the link is very, it's very long, but if you research PubMed, they are comprised of more than 39 million citations for biomedical literature from Medline, life Science Journals and other online books. What you can literally do is you can literally type in your specific type of cancer. In my case, it's Exon 21 L 8 5 8 R in the query box and a bunch of research will actually come up. That research is so helpful for you to understand and for you to learn what's happening with your specific type of cancer. Even if you don't have a genetic mutation, I highly recommend you spend an afternoon an hour checking out PubMed and looking at the latest research according to journals. The next sources of information that nobody told me about, literally nobody that I had to figure this out on my own were lung cancer nonprofits. Sure, I knew about the American Lung Association, but nobody told me about go-to for lung cancer Longevity Lung CAN and the White Ribbon Project. These are things that took me years to learn. You guys, I will make sure to include a link in the description and you can see all of these right here. These are important nonprofits that you should all be aware of. There are also lung cancer advocacy groups that nobody told me about, and specific to your type of cancer, if indeed you have a genetic mutation like I do. Some examples of these advocacy groups are EGFR, resistors, ALK positive. There's a group for Exon 20, and there's also too, if you are young, under the age of 40, there is Young Lung Cancer Initiative. These amazing advocacy groups have put information out there that'll be so helpful for you to learn about the experience of other people and how it relates to you. I promise that you will find hope and you will find information and they are worth checking out. Also, something as it relates to information that I highly recommend is subscribing to different newsletters. In my case, I subscribe to the EGFR resistors, so I get information on that. I get information from longevity and also the go-to for lung cancer. There are many, many more. Find what works for you, but just be aware that part of this disease means that you have to keep current on the latest information. Another benefit to subscribing to these different advocacy groups are the fact that there will be in-person and virtual events that you can attend. For example, happening this year through Longevity is the Hope Summit. That is May 1st to May 3rd in Dallas, Texas. I went to that, that's, that was my first in-person lung cancer summit and provided a lot of useful information. There were patients there, there were doctors there, there were research there, there were sharing the latest and greatest information. Also, if you happen to be international, the 2026 World Conference on lung cancer is happening in 2026 in Seoul, Korea, September 12th to 15th. I'll make sure that also too, we put a link for that in the description and there are also other events where they haven't released the dates of such as the EGFR Resistors Patient and Caregiver Summit. By joining a lot of these advocacy groups and subscribing to their newsletters, you'll get notification of when these events are happening. Another great source of information including Lung Cancer Strong or other podcasts there is the I-A-S-L-C, the International Association for the Study of Lung Cancer. They discuss the latest advances. They put out a great podcast that you're going to want to make sure that you subscribe to. Backstage at Upstage is another podcast which features interviews with leading medical oncologists patients and they're also helping to bring awareness and funding for lung cancer research. The patient story, which I've watched a bunch of those videos, they offer patient stories by cancer subtype, so whether or not it's lung cancer, breast cancer, lots of different cancers are on the patient story, which you might find some hope and resilience and information learning from other people, which I highly recommend. There are also podcasts about nutrition in general. One that I love is the Nutritional Facts Podcast with Dr. Gregor, which talks about nutrition if you're following a plant forward diet, and then also if you want to deepen your spirituality and inspire your connection with God. Joel Osteen has I think, a great podcast which has hearing a lot of his stories and especially his mother had liver cancer. She was stage four liver cancer and she survived for many, many, many years I think in the decades, so there's a lot of hope and a lot of resilience there. I also want to talk about some books, whether those are audio books or books that you have by your bedside. Five books that were absolutely instrumental for somebody would've told me about early on in my diagnosis. Number one, radical Remission by Kelly Turner. These are stories of people who have had advanced stages of cancer, various types of cancer, not just lung cancer, and they have survived through lots of different things. There are actually, I think 10 or 11 factors in there. Radical hope by the same author, by Kelly Turner also too provides a lot of hope and stories of resilience and things that you could learn from whether or not that you take one, two, or three or a bunch of snippets of information. They will help to inspire you and give you hope. There's also another book that I love, it's called Supernatural by Joe Dispenza that talks about how you can use your mind and reverse engineer different outcomes. He talks a lot about meditation, specific stories and things that he's done with his groups that could be inspiring and then last I want to say these two books especially Will to Live by Paul. Safer is an absolute must, especially if you're a stage four lung cancer patient right now. You can find this on Amazon and another story of hope and resilience that I absolutely loved is Living With Terminal Cancer by William Sheen. These books are all on Amazon and another book that I highly want to recommend are Cured, and this is by Jeffrey Redigr all on Amazon and you can get, in a lot of cases, you can get the audio versions to these. I hope that you find that information helpful. Self-advocacy is essential. I have to tell you that this is one of the most important things. It took me years to really understand and really help to advocate for myself, but here's what I want you to know relating to your number one and the idea of self-advocacy, it is okay for you to change your cancer center, for you to change your oncologist and for you to change your medical team especially, especially if it's warranted. I'll give you a example. I changed my medical team three times. Right now I'm being treated for stage four lung cancer at Memorial Sloan Kettering in New York City, and I told you already that I'm on a clinical trial. One of the reasons that I changed my medical team is number one, access to clinical trials. We're going to talk about that in a future episode. Another reason why I changed my medical team and I changed my oncologist is because of a lack of urgency and a lack of care, so one of the things that happened is in a previous cancer center, they found a lesion on my liver and they told me that the next appointment that they could give me to check that out because we needed an MRI would be two months later, I asked for that cancer center to please help me find an earlier appointment. I would be willing to go anywhere, travel anywhere at any time of night, and they told me no. When that happened, I was out of there. A lack of urgency, a lack of care. If you don't feel that your medical team is dealing with you the way you want them to deal with you and the way you need, the way that you really need people to actually care about you need to advocate for yourself and you may need to go somewhere else. Another thing as it relates to self-advocacy and your medical group is do not be afraid to ask questions without being fearful and afraid of judgment. If your medical team is giving you judgment and giving you attitude for asking medical questions, especially as it relates to your condition, you know what I want to say, lose their number, find another medical team. There are many that will be happily and will deal with you with open arms. You should not have to worry about asking medical questions and having to defend that. The next thing I want to say about self-advocacy is get a second opinion. A great oncologist will not only support you getting a second opinion, they might actually be the gateway for you in order to do that, so don't ever be afraid of getting a second opinion. It is in your best interest, and I've heard of so many cancer patients, and again, I was one of them. I was afraid to get a second opinion because I felt like I was cheating on my oncologist. Nothing could be further from the truth. Actually getting that second opinion saved my life and it could save yours too. The next thing I want to talk about self-advocacy that I wish that someone had told me early on relates to research and clinical trials. I just talked about the PubMed. There is also too an important URL, which you need to know about, and that is clinical trials. I'll make sure that there's a link in the show notes today. Clinical trials are not the last resort for you guys, and this is what I wish that someone have told me early on. Actually, I went to the Hope Summit by longevity and there were a group of stage four cancer survivors on stage and you guys will never forget that, and they said, okay, what is your best piece of advice? What do you wish that somebody would've told you early on? And they said, look at clinical trials sooner than later. Why? Why? I'll tell you why, and this I learned from actually being on a clinical trial myself. You'll have a lot more ease of actually qualifying for a clinical trial early on in your diagnosis than you will later on. You should utilize absolutely the most innovative and the best research and the cutting edge therapies early on in your case, not later when it's a last ditch ditch effort. Okay, so research those clinical trials. Bring it up to your oncologist. Actually, I had to with one of my oncologists. My oncologist didn't even mention clinical trials, never spoke a word about clinical trials. I had to go to that longevity center, go to that Hope Summit and find out about clinical trials on my own. This is the part about advocating for yourself. Do not be afraid to talk to your oncologist about clinical trials and your cancer center, and if you can't find the information there, go search for a second opinion. Learn what clinical trials you qualify for. Even if you have no intentions about doing them, you need to have that information in your back pocket. It could potentially save your life. The last thing I want to say and the last thing I want to share, which is the most important factor of all of the factors and it's this long-term survival is possible. I wish that someone would've told me that early on that long-term survival is possible for stage four lung cancer. There are new treatments, there are new protocols, there are new discoveries, there is new research. There is progress being made every single day for lung cancer. Please make sure that you are subscribed to all of the information that I talked about, really get familiar and get in deep with the lung cancer community. They're sharing these innovations and therapies all the time. Another thing I want to say as it relates to long-term survival, and that is to find examples of people who are living long with lung cancer and there are examples of that if you just search it, I promise you there are examples in this book will to live. The other example, this book also here, living Terminal with Lung Cancer, William Schuette has been living with lung cancer for almost two decades, so there are actual examples of people who are living a long life with lung cancer. I want you to be aware of those people. I want you to be aware for yourself, you, yes, you could be one of those people. So remember, long survival is not only probable it's possible for you, so I hope that you will take all of this information today. It is one of the most important videos you guys that I've ever recorded and that I've ever shared three years I've learned so much. Please email me with questions at tina@lungcancerstrong.com. I want to thank you for listening. I want to thank you for subscribing. I want to thank you for the power of your example. I want to thank you for providing hope to another person and being part of the lung cancer community because one thing is sure we need each other more and we can do this together. 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 reply. 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.