Lung Cancer Awareness: From the Top Down and the Bottom Up

Speaker A: He told me I had lung cancer. And I just to this day felt like he was wrong. And I kept saying, no, I have sweaty hair, I just ran six miles. I have no symptoms. I've never puffed a cigarette. This is crazy. You know, the EMR messed up. The scan is for the wrong person. This is malpractice. I just couldn't believe that it had happened to me because to me, I had always thought lung cancer was for people that smoked or were short of breath, not that lung cancer is for anyone with lungs. And I had thought that I was healthy and I took care of myself and that was a rare disease.

Speaker B: That's Shira Bowler, author of the New York Times best selling book One Scan Saved My Life, a memoir chronicling her unexpected cancer diagnosis, treatment journey and transformation into an advocate for greater awareness and earlier detection. I'm Ellen Kelsey and this is the business group on health podcast conversations with experts on the most relevant health well being and workforce issues facing employers today. Lung cancer is a leading cause of cancer related deaths worldwide. Yet many people are surprised to learn that up to 20% of lung cancers in the United States occur in people who have never smoked. In this episode, Shira shares her personal story from the scan that changed her life to to her mission to expand awareness and improve access to screening. Together, we explore what her experience can teach us about the importance of early detection. Shira, uh, welcome to the podcast. We are so happy to have you join us.

Speaker A: Thank you. I'm excited to be here.

Speaker B: Well, you and I recently became fast friends and you were sharing your story with me and a book that you recently wrote, published just a couple months ago, titled One Scan Saved My Life. So I'd like to start our conversation today by having you share your story. What led you to write that book?

Speaker A: You're right, Ellen. I did write the book and it hit New York Times bestseller at the end of April, which was really exciting for me. I've never thought being an author was on my checklist of items to accomplish in life, but I also never thought I would say that I am a lung cancer survivor and thriver and. And navigating that journey. What happened when I found out I had lung cancer and I was recovering in the hospital after removing half my right lung, I realized that I wasn't unique at all in my diagnosis that lung cancer is killing more young, healthy women than breast cancer and ovarian cancer and colon cancer combined. And when I had that realization, I thought to myself, things need to change. We need to check for lung Cancer like we do breast cancer and colon cancer, and that maybe the best opportunity would be to start with a book and to have that anchor.

Speaker B: And your path to diagnosis was a bit of luck and chance. You did not have any symptoms. So share with us how you came to be diagnosed. What was that path like?

Speaker A: You're right. I had no symptoms, and I actually still have no symptoms. My husband and I are in the healthcare industry. We have a healthcare investment firm. So whenever any new healthcare technology comes out, we always sign up to do it. When the full body MRI became an option to pay out of pocket, my husband signed us up very quickly. I actually battled him a lot on it. We were in New York, and I wanted to see some friends and run around. And I also am, um, very claustrophobic. So getting into a machine for an hour sounded miserable. And I canceled the appointment and he rebooked it, and I canceled it, and he rebooked it. And ultimately he won. And I went and I got into the claustrophobic machine for an hour and walked out. And when the report came, to be honest, it pointed out some things I already knew. And it also pointed out as a minor finding that I had a, uh, 3.8 centimeter master in my right lung. And we kind of ignored it because it was a minor finding. It stated to correlate to symptoms. It asked if I was a smoker, which I've never puffed a cigarette. So we ignored it. And I shared the findings, actually with my dad, who's a lung doctor, and he told me that MRIs are not the way we look at lungs. We usually use a CT machine. And so he told me to follow up with a CT if I wanted to. We brushed it under the rug and kept going. Enjoyed the rest of the trip in New York, and about two months later, I was at my doctor in Nashville and shared the findings on the MRI again with him. Again, I was showing him because I thought it was interesting to show him the app and how cool it was to see this full body diagnostic test. And when I showed him the minor finding, he said what my father had said, which is, MRIs are not how we look at the lungs, and would I like a ct. So I said yes and followed up with the CT with him. And the radiologist in Nashville at that point also said, now it was a 4.2 centimeter mass in my right lung, but to correlate with symptoms. And since I had run six miles that morning, I had no symptoms and to consider following up in a few months. That Report when I shared with my father and I shared with my friend who is a lung radiologist in Nashville, is what triggered them to be more alarmed and ultimately ordered another ct. And I woke up on a Monday morning, did my six mile loop with my girlfriend in Nashville, up and down the hills, felt great, Walked in, had another CT scan and walked into the pulmonologist and he told me I had lung cancer. And. And I just, to this day felt like he was wrong. And I kept saying, no, I have sweaty hair, I just ran six miles. I have no symptoms. I've never puffed a cigarette. This is crazy. You know, the EMR messed up. The scan is for the wrong person. This is malpractice. I just couldn't believe that it had happened to me because to me, I had always thought lung cancer was for people that smoked or were short of breath, not that lung cancer is for anyone with lungs. And I had thought that I was healthy and I took care of myself and that that was a rare disease. And it wasn't until I said before I was recovering in the hospital that I realized how lucky I was that I caught it so early, that it was not that rare.

Speaker B: I use the word fate when I think about you and, you know, the good fortune that you are in this industry and that you and your husb and kind of avail yourselves of new and emerging technology and you went forward with the mri, and then also that your father is a professional in this field, that is his specialty of medicine. And that one of your very best friends in Nashville is also in this field. So many stars aligned for you to get this early diagnosis. And you've mentioned already just a couple times in this conversation that you had no symptoms and that you've never puffed a cigarette in your life. And I think that's probably one of the most common misconceptions about lung cancer. And as you now have been on this journey, what would you like to share about that? About the stigma of lung cancer, but then also just how common it is among non smokers.

Speaker A: It is crazy how common it is. So Northwestern did a study in 2025 and they found that 70% of people they diagnosed in 2025, um, did not meet guidelines to have their lung CT but had lung cancer. So which means that they were not over the age of 50 and had been smoking a pack a day for 20 years. They also found that 25% of their patients were like me, they'd never puffed a cigarette. I think that the misconception is astronomical as A lung cancer survivor. When I tell people I have lung cancer, the first question is, oh, I didn't realize you smoked. How long have you smoked? When did you stop smoking? That is the number one thing they say. I think that the smoking cessation campaigns that went on decades ago were so successful that people started thinking, if you smoke, you have lung cancer. Instead of thinking if you smoke, your chances of getting lung cancer increase. It's not a one to one ratio. And in recent years, for whatever reason, and they don't know why, they've seen a huge uptick in lung cancer in young, healthy women that don't smoke. In Asia, they did a study and found that women that didn't smoke were actually getting lung cancer at a faster rate than men who did smoke. And they don't know why. They're trying to figure it out. They've hypothesized that it was cooking oils. To be honest, Ellen, uh, I don't cook, so that is not mine. They redid the study in New York City and they found similar that the Asian non smoking women were getting lung cancer faster than the Asian smoking man. And as we know, in New York City, similar to me, they also don't cook. So they realized it wasn't cooking oils. Another interesting fact that I learned in this whole journey is that breast cancer survivors have a twofold increase of lung cancer as a primary cancer within five years of diagnosis. That, to me, really resonated. I am sure that so many people today have so many friends that are breast cancer survivors. I think we are so lucky that we've done such an amazing job diagnosing breast cancer earlier and able to beat it. And breast cancer seems to be becoming, for some, this chronic disease that one day they'll die with, not from, which is amazing. But the fact that we're not checking these women for lung cancer even after their breast cancer diagnosis seems unfair. Can you imagine? Like, it would almost feel like lightning striking twice. And so when I was recovering in the hospital after my lung was half removed on the right side, and I started reading about this because it was a shock, Ellen, um, when you're sitting there and they tell you you have lung cancer, but you've never puffed a cigarette, and your father's a lung doctor, and within a week they remove half your right lung and you're in the hospital for a few days, the only thing I knew to do was to read as much as I could to understand how did this happen to me? What is going on? And so when I started Realizing that this, as I said, wasn't that unique of a diagnosis, I started trying to figure out what's happening. And I think what I realized in that whole process is that only testing people that are over the age of 50 that smoke a pack a day for 20 years isn't right. The kids these days are vaping. There's just different ways that they're taking in nicotine. Uh, I just think it's a very antiquated way to look at things and we need to change that. We need to catch it earlier. I found that stage one lung cancer survivors like myself have over 90% chance of survival and stage four are less than 10% for the next five years.

Speaker B: So what's a person to think when they hear this conversation? And maybe they don't meet the screening guidelines, but they're hearing you speak and they're very concerned that maybe this too is something that they're going to have to contend with. So what would you paint for them as kind of the current screening landscape and maybe how you're advocating for some, uh, adjustments there?

Speaker A: I tell everyone to go ask their doctor for a low dose chest ct. That is my number one request. For people to do a low dose chest CT needs to be ordered by a physician. It is less than three minutes of a procedure. You lay on your back, they roll you in and out of a machine that is not a claustrophobic inducing machine and you're done. You don't take your shirt off, you don't take your bra off, you don't take your underpants off, you don't put on a gown. You are in and out in three minutes. You can go with your girlfriend, you can go on your coffee break from work. The other thing I tell people is to tell the facility that conducts the low dose CT that you do not have insurance. If you pay for this out of your own pocket, you can find places that are less than $200. If they try to bill your insurance, your insurance will deny it unless you're over the age of 50 and smoke a pack a day for 20 years. Therefore, you will pay much more than the $200. So one of the things I'm doing is all of the profits from my book that you mentioned called One Scan, Save My Life, go to the foundation I started, and the fund I started is called Cancer Doesn't Care. And that fund is set up so that I can pay for people's screens, that $200 or less screen for people that can't afford it. I don't Think that cancer cares. It's attacking the rich and the poor and the Asian and the not and the man and the woman. That it shouldn't prohibit people from getting that scan. Cancerdoesntcare.com is my website. There's actually a section on there that you can print a page out to take to your doctor to help explain to your doctor why you want the scan. I have come across a lot of physicians that don't want to order the scan for people. They think that you don't meet the guidelines and therefore do not need the scan. Even my own father as a lung physician, when I first went through this process, he kind of rolled his eyes and thought it was silly that I was doing these scans because he knew that I didn't smoke. Because the antiquated way of thinking about things of over 50 and smoking a pack a day is the way that my father, in his 70s, learned to practice medicine and found that that was the most common reason for lung cancer. Well, it's changed. It can be. Like we discussed radon, there might be some sort of a family history. Asian women seem to be getting it. I would say veterans who've been around these burn pits have a higher likelihood. And so we have to change the narrative. We have to re educate the doctors, re educate ourselves, re educate the insurance companies and medicare and Medicaid to change the guidelines. But I always tell my friends, please go get a low dose chest ct, print the page from cancer doesn't care, and then blame me. Tell them I'm your friend. Tell them you read my book. Read the book, walk in and hand the book to the doctor to explain to them that this is very important, that this means a lot to you. The other thing I would say, Ellen, is when you do get these low dose chest CTs, your lungs have little nodules just like your skin has freckles. So what's important is to get that baseline. So we all go get skin checks from our dermatologists, right? We stand there naked with the gown kind of on us, and they look and they say, is this freckle normal? Is this mole normal? Has it changed in the past year? It's very important to have that baseline so that the next year you can say, yeah, that freckle was there last year or that mole and nothing's changed. That's the same with your lungs. You'll have little nodules. You want to see it change. Just like mine grew from 3.8 to 4.2. Big red flag. You can have a nodule because you had pneumonia and it's a scar tissue and it doesn't change over time. That's okay. But you need that baseline.

Speaker B: You've said so much there that I want to ask you about. And you mentioned, you know, the organization that you founded, Cancer Doesn't Care, and, you know, info sheets that individuals can take to their physician. You're doing fundraising and using the proceeds from your book to fund for the low dose CT scans for people who maybe can't afford them themselves. But I also know you are doing a lot of work advocating for important reforms, both kind of federally from a policy perspective. But then you're talking to a ton of industry stakeholders about things that they can do differently, whether it be insurance companies, employers, and how they might want to cover certain screenings, maybe more robustly than required by some of the guidelines. Anything else you'd want to share there about some of the general advocacy work you're doing, whether it be talking to stakeholders or from a policy perspective?

Speaker A: Yeah, I think it's interesting when I think about, um, my recovery and all the research I did, I realized that there's like a top down and a bottom up. So a lot of what we've talked about so far is a lot of the work I've done from the bottom up. So the book I wrote, you know, yelling at friends and on podcast to go get a low dose ct, working to help doctors understand that if you have lungs, you can get lung cancer. It's not just reserved for smoking individuals. The top down has been exactly what you just said. I've been speaking to different stakeholders, so I've spent time with the Secretary of Health, I've spent time with his chief of staff. I've spent time with the administrator of CMS, Dr. Oz, Abe Sutton, at, uh, the Innovation center there, to help them understand that this guideline of over 50 and smoking a pack a day for 20 years needs to change. We need to, at the very least include what I sometimes consider the low hanging fruit. Whether it's a, uh, breast cancer survivor or a veteran or somebody with a family history. I, in an ideal world would make it for women over the age of 40, just like we're doing mammograms or men over the age of 40. But I think we have to start somewhere. The other thing I've been doing is speaking with insurance companies. So, like the Aetna CEO or the UnitedHealth CEO, and they've done a lot of work looking at their claims data and backdating it over the last couple decades and running Analysis saying if we gave everyone over the age of 40 or these lower hanging fruit, higher risk patients a low dose CT starting at 40 for $200 every three to five years, what would that look like to the bottom line? And what they've actually found is not only is it saving lives because we're catching lung cancer in stage one, but it's also saving money. So when I look at my own case, I was diagnosed based on that scan on a Monday. The following day I had a bronchoscopy. On Wednesday, I found out from the bronchoscopies lab information that it was an adenocarcinoma, a fast growing, highly invasive cell type of a cancer. Thursday I met a surgeon. I ran through a bunch of pulmonary function testing like in a breathing machine. On um, Friday they conducted a PET scan. So they did another scan with contrast and nuclear medicine. Dr. Read that. And on Monday I had half my right lung removed. I'm on no medication. I follow up with a CT scan every few months. I get blood work done, but I am kind of done with the high dollar costly procedures. It was from a Monday to a Monday and now I'm um, no evidence of disease, cancer free. And I go through, I call it an aggressive surveillance program. I get scanned and I get blood work. Scans and blood work are not expensive for insurance companies or employers or the patient. If my cancer was caught once I had a symptom like a uh, sore hip because the cancer had spread to my bones or some blurred vision because the cancer had spread to my brain, I would be on chemo and radiation. I would be having a lot of therapy appointments, my children would be doing that. I would have to get nannies to help and find a new job that was more conducive to a flexible schedule. It is astronomical on a pricing perspective for the insurance companies and employers. And so when you look at both of the life saving and financial saving, it just makes sense. But we need data and a lot of times to change the guidelines, they want to see the data and we just don't have the data. And it's hundreds of millions of dollars to conduct these double blind studies. So one of the things I've been working with and thinking about is how can we get people to start getting scanned? So I can yell and scream from the bottom up to tell people to go get one, but that's one at a time. The other way that you and I have discussed is these, you know, self insured employers, do they go to their insurance companies and say we want to include a low dose ct, just like we do a mammogram or a colonoscopy. And that helps people stay in their employer because they want that benefit. It helps people know where their baseline is for their low dose chest CT and make sure that the lung nodules are followed and tracked.

Speaker B: Yeah, and we did talk about that because there is, um, precedent there of employers when it comes to breast cancer and covering more advanced screenings for breast imaging, whether it be ultrasound or mri. So there is some, some precedent there for other types of cancer screening. So I'm glad that you brought that forward as well. I love the top down, bottom up. It's all so important and, um, impressive that you are investing so much time and energy and passion in doing all of that. It is so important. I did want to ask you about the prevalence of lung cancer relative to other cancer deaths. I think many people don't understand that lung cancer is the leading cause of cancer deaths worldwide. Can you expand more on that?

Speaker A: It is astronomically higher. And I have found as a lung cancer survivor that it is very lonely. The fact that we don't screen for it and therefore don't catch it in stage one as often, the fact that we don't feel our lungs and your lungs compensate for each other. So half of my right lung was removed in October of this year. By mid November, I was back to running. In December, I was skiing at 10,000ft. It is not that my lungs regenerated and grew. The healthy part of my lung that was left in my body just compensated and took in more air. I never had a symptom. I am still running and hiking at high altitude and doing okay. And because we don't feel it, we only catch lung cancer by chance. If it's a random scan like I did, or somebody falls and breaks a rib and they do a scan and see it, or if they're over 50 and smoke a pack a day for 20 years or it's spread. So lung cancer primarily spreads to your bones and your brain first. And that's why I mentioned people will get a sore hip on a run and they'll be trying to figure out why their hip hurts. And eventually they realize there's cancer in their hip and it spread from their lungs. We don't have the right medicine yet. The chemotherapy, the targeted therapies are not as developed. Being a lung cancer survivor is a lonely place to be. And what I would say is the n of who is getting lung cancer might be lower because we're not testing for it. And we're not doing these low dose chest CTs, but the prevalence in the death is so high. So like I said at the beginning that I realized was that lung cancer was killing more young, healthy women than breast cancer and ovarian cancer and colon cancer combined. That's when I realized that I was the luckiest girl in the world, that I had done that scan and caught my lung cancer so early and that I wasn't unique in my diagnosis. And those two pieces together were the reason I started on this mission and I wrote the book. I feel at the highest level that my hopes and dreams are that lung cancer and all cancers become a chronic illness that we die with, not from. And we have been successful at doing that for so many people. Let's say with HIV, I'm a child of the 80s and in the 90s and it was such a scary disease and we have come up with a medication and that allows people to live a normal life with it. And with breast cancer we're able to catch it early enough that a lot of patients, including my own mother, my mother's ah, a breast cancer survivor of 25 years. She caught it, she went on the medicine. No evidence of disease for 25 years. She's beat it. She will one day pass and they'll say she was a breast cancer survivor, not that she passed from breast cancer. And that's a hope I have for all cancers. But lung cancer is the number one cancer killer. I often talk about lung cancer killing more than breast and ovarian and colon for young women combined. But if you look at all of these different metrics of cancer deaths, you can take any two or three of them and put them in the bucket and lung cancer is still killing more than the others.

Speaker B: Shira, I'm sorry. So glad that you are healthy and thriving and on the other side of this and just so grateful for you sharing your story, the important work you are doing to shine a light on this often misunderstood form of cancer and all the wonderful work you're doing to advocate and educate on, um, behalf of yourself and future individuals who might be contending with this condition to hopefully catch it as early as possible and have the prognosis that you do. So thank, thank you again. Just so grateful for your passion and energy on this topic.

Speaker A: Thank you, Ellen. I really enjoyed speaking with you and I guess my final send off is to please go get your low dose chest ct.

Speaker B: I've been speaking with Shira Bowler, author of Onescan, Saved My Life and founder of Cancer Doesn't Care, an organization dedicated to expanding access to lung cancer screening and advocating for broader, more inclusive lung cancer screening guidelines. I'm Ellen Kelsey and this podcast is produced by Business Group on Health in partnership with Connected Social Media. If you enjoyed this episode, please subscribe and leave a review.