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Lung Cancer Patient Stories The White Ribbon Project

Lung Cancer Awareness

Anyone with Lungs Can Get Lung Cancer

Awareness Series

Edited by: Katrina Villareal

Lung cancer doesn’t discriminate. While a majority of cases are linked to a history of smoking and diagnosed over age 65, it can affect anyone, regardless of lifestyle, background, or age. In this new series, Anyone with Lungs Can Get Lung Cancer, we bring you real stories from patients who never thought they’d hear the words “you have lung cancer.” Through these impactful videos, we aim to shed light on the journey of lung cancer patients and the realities of this disease.

Whether you’re a patient, a caregiver, or simply looking to understand more about lung cancer, these stories can offer hope, perspective, and perhaps a new outlook on what it means to be affected by this illness. Join us as we uncover the strength and resilience of the voices of those facing lung cancer head-on while we help raise awareness and break stigmas.


The White Ribbon Project logo

We would like to thank The White Ribbon Project for its partnership.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Johnson & Johnson - J&J

Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content



How I Learned I Had Lung Cancer

Amanda and Ashley were both young and active, yet each faced the life-altering diagnosis of stage 4 lung cancer. They share the difficult journeys that led them to answers, highlighting how early signs were easily mistaken for minor health issues.

From Amanda’s experience of being diagnosed just 10 days after delivering twins to Ashley’s persistent symptoms that were initially dismissed, their stories underscore the reality that lung cancer can affect anyone, regardless of age or lifestyle.

Introduction

Amanda: Before the diagnosis, I lived in my bachelorette apartment with my dog. I was a runner. I worked out. I lived my best life all the time from 30 to 36. It was incredible.

Then the big transition of the diagnosis and a life change happened because, in February 2022, I got pregnant with twins! Then 10 days after I delivered them, I was diagnosed with lung cancer.

Amanda Bialack-Stewart
Ashley

Ashley: I was the mom of a boy and a girl who were five and two at the time. I was working full-time. I love going on nature trails and hiking. I was also working out with a personal trainer and weightlifting up until the day the pain started.

Your only prerequisite for getting lung cancer is having lungs. You don’t need to smoke. It doesn’t matter how active you are or how healthy you are. If you have lungs, you can get lung cancer.

Amanda

Initial Symptoms

Ashley: My husband and I were working out with a trainer and one morning, we did a hard HIIT workout and backyard swimming. I noticed that I couldn’t be underwater for a very long time. I went on about my day and started having sharp pain in my right abdominal area in the rib cage area. I thought it was strange but I ignored it.

That evening, we were hosting a small group of roughly 20 people or so. As we were eating, I felt a sharp pain in my right abdominal area and my right shoulder area. I was wondering if it was something I ate or if I had gallstones. The pain was unbearable.

The next day, we went to a local ER. They did a workup and noticed that my lung was full of fluid. Because I was 34 and a nonsmoker, they said, “You have pneumonia and you have a lung full of fluid.” They sent me home with 12 prescriptions.

Ashley
Amanda

Amanda: My first symptom was in November 2021, which was a breathing episode that I had overnight. To this day, we still aren’t very sure what it was related to because it felt like I couldn’t breathe all of a sudden and it lasted for about 20 seconds. It was very scary. 

I went to my primary care doctor. They did a chest X-ray and a breathing test, and everything came back fine. She said, “You’re 35. We can do more diagnostic testing, but the truth is it was probably some crazy fluke that happened.” I let it go.

A couple of months later, I got pregnant and now I had a new health issue that I needed to deal with.

We kept holding on to hope that this could be wrong. I don’t have cancer. We were in disbelief.

Ashley

Hearing the Words “You Have Cancer”

Ashley: My lips started to turn blue. My husband didn’t tell me then because I was an anxious person in general, but he said we needed to go back to the ER.

They said, “You have a large pulmonary embolism,” and they immediately put me on a blood thinner. I will never forget the doctors’ faces because they were surprised that I survived this. It was only by the grace of God that I went to this hospital because the first hospital completely missed my pulmonary embolism.

All signs were pointing toward cancer. The moment the doctor came in and confirmed it, I completely lost it. I was bawling my eyes out and uncontrollably shaking. It was so unbelievable. I was so taken aback.

I had stage 4 lung cancer. It’s inoperable and it’s terminal.

Ashley
Amanda

Amanda: I had no energy left. My heart rate was high all the time. Sometime during my pregnancy, I developed a cough that didn’t go away. All the doctors told me, “Don’t worry, the cough will go away. When you deliver the babies, your heart rate’s going to go down.” Everything was because I was pregnant.

I ended up in the emergency room because of the cough. They did a chest X-ray and found fluid in my lung. The pulmonologist came in and said, “You’re not hallucinating the heaviness that you’re feeling in your chest. There’s fluid in your lung.” Once again, I was told I was so young, so this was probably a fluke. They didn’t know what it was, but they’ll send it to pathology.

I said to myself, “There’s no way this is cancer. There’s no way.” It seemed impossible. I’m a runner. I worked out until I was eight months pregnant with twins. I was 36 at the time of my diagnosis. There was no way this was cancer.

The next day, he called and said it was lung cancer. The lymph node in my right clavicle was swollen to the point that I could feel it. I told him, “I’m going to be diagnosed with stage 4, aren’t I?” He said, “Yes. The fluid is already considered a metastasis.”

Where we’re going to be in 10 years is not where we were 10 years ago, so there’s a lot of real hope.

Amanda

Living with Stage 4 Lung Cancer

Ashley: This has impacted me most with my kids. I quit my full-time job so that I can soak up all the time with them.

It’s also a shift because I’m such a data-driven, logical, realistic person. Cancer has taught me to live with optimism and hope.

Ashley
Amanda

Amanda: Everyone around me forgets that I have lung cancer. No one treats me any differently until I tell them what’s up. I’m training for a 10K. I work out every day. I chase after my children at the park. I don’t look any different than anyone else.

That’s where the science is today. If I can get all of the medicines to push me out long enough, if I can get 10 years, where we’re going to be in 10 years is not where we were 10 years ago, so there’s a lot of real hope.

There is HOPE with This Disease

Ashley: Have hope. My faith is everything. Think positively. Think that you are healed. Keep walking like a healed person. Keep working out like a healed person. Keep doing life like you are healed.

Advocate for yourself. Prepare. Don’t trust one doctor. Get as many eyes on the glass as possible. Your life is worth it.

Ashley
Amanda

Amanda: Hopeful is the only way I know how to be. I’m a glass-half-full optimist all the time. I try to find a good balance between the hope of science and medicine and the reality of my situation. The amount of research going on in lung cancer is amazing, hopeful, and incredible.

Amanda

The Power of Knowledge: Biomarkers

Jill and Luna share their intertwined journeys with lung cancer. For Jill, a history of lung cancer in her family led her to advocate for early detection, and she was diagnosed at 39. Meanwhile, Luna offers her own experiences and perspective on navigating life with lung cancer.

Together, they discuss the emotional impact, the advancements in genetic testing, and how targeted therapies have reshaped their lives.

Introduction

Jill: My story is quite different than most people because it started long before I was diagnosed. When I was 13, I lost two grandparents to the disease within weeks of each other. After six months, my dad was diagnosed with lung cancer and he died three months later at the age of 41. When I was in my 20s, both my mom and my aunt died of lung cancer.

Jill F.
Luna O.

Luna: I never had lung symptoms. The week before I was diagnosed, my family and I were on an incredible trip to Machu Picchu. Two days after we returned, I had incredible abdominal pain. I was certain I had some infection from drinking bad water in South America. My husband’s a pediatrician and he decided that I needed to be seen in an ER. From there, we did imaging and I was found to have advanced cancer.

My doctor said, ‘I don’t think it’s a coincidence. You should get a scan for a baseline and we will go from there.’

Jill

Jill: I remember trying to understand how this happened and that it could not be a coincidence. That’s when I started advocating without even knowing it by pushing doctors. Finally, my doctor said, “I don’t think it’s a coincidence. You should get a scan for a baseline and we will go from there.”

I got a baseline scan and the scan was clear. I was 30. Everything looked good. Then I had four kids, so I skipped and waited five years. I got another scan at that point and they found a nodule. Now, at that time, we learned about ground-glass nodules, so we watched it.

I got follow-up scans six months later, another one six months later, and then a year later. Sure enough, a year later, that ground-glass nodule took a nasty turn and that was when I was diagnosed.

Jill F.
Luna O.

Getting the Official Diagnosis

Luna: He said, “We found a lesion in your lung, liver, and bones. We want to admit you so we can figure out the origin of these tumors.” Finally, I said, “Time out. Are you telling me that I have cancer?” And he said, “Yes.”

I was stunned. I had always been such a healthy person. They told me that they thought I had lung cancer. I couldn’t believe it because I had no risk factors for lung cancer. Back then, I was ignorant enough not to realize that people who never smoked could even get lung cancer. 

My doctor suggested that I get tested for this newly described gene mutation… I was positive for ROS1.

Luna

Jill: All I could think about was that I was diagnosed with the same disease that killed my mom and my dad. I still get emotional when I think about it because those were the two most difficult times of my life.

The only thing worse than being diagnosed with cancer is watching the people you love suffer and the fear in their eyes because of your diagnosis. I could almost feel it because I could identify with it.

But then I thought, “Okay, I’m going to be the story of hope. I’m going to be the poster child for early detection.”

Jill F.
Luna O.

Biomarker Testing

Luna: The next step was to do a biopsy. In 2012 and early 2013, they started testing for tumor markers. At the time, there were only two, but I came back negative for those. 

I started traditional chemotherapy and when we did follow-up imaging, I had disease progression, so it was not helping me at all.  That’s when my doctor suggested that I get tested for this newly described gene mutation, ROS1. It was new and it accounted for about 1% of people with adenocarcinoma of the lung. I thought that meant a 99% chance that I wasn’t going to have this mutation. My husband and my oncologist talked me into it because they said, “If you have it, there is an oral chemotherapy for it.”

I was positive for ROS1. We wrangled with our insurance company, but as soon as we got that, I started crizotinib. I have been on it for almost 12 years now and it’s controlling my cancer. I responded well to the medication and I’m among a handful of people who are getting long duration on this oral chemotherapy.

The true value of all this research for patients and families is hope. Hope represents a chance and every patient deserves a chance.

Jill

Jill: I got the testing done and I was EGFR positive. It guided my treatment from there because adjuvant therapy for lung cancer at the time had very minimal benefit, but I needed to be able to look my kids in the eyes and know I did everything in my power. I had already planned that I would look at adjuvant therapy after surgery as insurance. I needed to do it. I discussed it with my doctor and I ended up going on targeted therapy.

Jill F.
Jill F.

Living with Lung Cancer with Hope

Jill: My dad died three months after he was diagnosed, which was a few weeks before I graduated 8th grade. My mom died six months after she was diagnosed, which was six months before the birth of my daughter.

There’s so much stigma surrounding smokers. Even if I did smoke, I do not deserve lung cancer.

Luna

But because of advancements in research and treatments, I have lived for 15 years. I have celebrated moments and milestones with my family. Those are the treasured milestones that were stolen from me and my parents because they did not have the treatment options that are out there now. The true value of all this research for patients and families is hope. Hope represents a chance and every patient deserves a chance.

Jill F.
Luna O.

Luna: Neither one of my parents had a cancer diagnosis. There are a lot of people who have asked me, “Do you ever wonder why you?” I take that and flip that. I always wonder, “Why not me?” I never took it personally. It’s better for me, too, because there’s so much stigma surrounding smokers. Even if I did smoke, I do not deserve lung cancer.


The Many Faces of Lung Cancer

Introduction

Donnita: I was diagnosed with stage 1A2 non-small cell lung cancer adenocarcinoma at the age of 68. I always thought that it was a possibility because I had a significant smoking history. I was hoping that because I had quit smoking 14 years prior, I had mitigated my risk.

Donnita B.
Sydney B.

Sydney: I’m a physician and patient living with stage 4 lung cancer. I was diagnosed at the age of 33 in 2017 when I was going through my medical internship for residency. Getting the diagnosis was a big slap in the face. It was so ironic that I was so anti-smoking, trying to prevent lung cancer, and then I got diagnosed with it anyway.

Calvin: I was diagnosed with stage 1 lung cancer at the age of 33 in 2020. I’ve never had major surgery. I’ve never only lived with one lung. I don’t know what the reality of that is.

Calvin M.
Donnita B.

Initial Symptoms

Donnita: I had no symptoms before my lung cancer diagnosis. In 2018, I read in the benefits brochure of my insurance that it was one of the wellness checks and that I was eligible for it. They said, “You need to get to a pulmonologist immediately. It’s urgent.” From the time I had my screening to the time I was on the table for surgery was six weeks. It happened quickly. My head was spinning.

Sydney: I’m originally from Jamaica and I was working in the medical system there. I recognized that something was off when I was running and felt like I was huffing and puffing like an old man. For me, that was unusual. I woke up one night feeling like I was having difficulty breathing.

Sydney B.
Calvin M.

Calvin: My daughter is allergic to peanuts. We were at an allergy and asthma center getting her tested and I asked her doctor, “Can I get a meeting with you? Because I supposedly have had adult asthma for the last few years.” She gave me some asthma tests and she said, “You need to get X-rays right now.” Then they said I needed to go to a pulmonologist.

I went to the pulmonologist and did a bunch of tests. She said, “You have one of three things. Either you have this fatal lung disease and you’ve got maybe 6 to 12 months, you have cauliflower lung, which is what a lot of people get from vaping, or you have lung cancer.”

Navigating a Lung Cancer Diagnosis

Donnita: They found a suspicious nodule. I didn’t even hesitate to think it was lung cancer. It was an immediate thought in my mind, but I’ll never forget how very calm I was. I didn’t connect the dots at that point. I didn’t realize that I had been a victim too.

I was born in the mid-50s and I had been a victim of the glamorization of the tobacco industry. I didn’t realize that’s the way society was and I was pulled into it. I didn’t understand how addictive it was. I didn’t connect the radon exposure. I didn’t connect the asbestos exposure. All of that was part of my growth.

My heart still breaks for those who are diagnosed at a later stage, but I’ve managed to get past my survivor guilt as I realized that I was a victim too and that I didn’t deserve to get lung cancer.

Donnita B.
Sydney B.

Sydney: When I was diagnosed, my father was pretty upset because we missed it in Jamaica, but I look at it differently. I don’t want to say everything happens for a reason. What reason would there be for me to get lung cancer?

Being diagnosed when I was in the US gave me access to all of the tests. It gave me access to learning that I had a biomarker and that I didn’t have to do surgery or chemotherapy. I started on targeted therapy straight away.

Even though my diagnosis is stage 4 and that sounds so scary, I have fortunately been pretty functional, even with my metastasis to the brain. It could’ve been found earlier, but my quality of life probably wouldn’t have been as good as it is now.

Calvin: When we went in, our surgeon said there’s a small chance they can save half the lung. He walked through the process and said, “I need you to give me permission that no matter what, I can do what I think is best.” I said yes.

Shortly after, he says, “It’s worse than I thought. It’s in another area. I could try and save half the lung, but if I do, you’ll probably be back here in two years to take it out. Not worth it.”

I had to relearn how to walk, how to urinate, everything. I wasn’t able to see anyone else, particularly my daughter and my mom. If I had known four years prior when I was first getting sick, would they have immediately diagnosed and figured it out? I don’t know that I would have cared as much because I didn’t have my daughter then. Now, I knew I need to get back to as best as I can be because I’m her dad. I’m the one who she plays with. I need to be able to still do these things.

Calvin M.
Donnita B.

Breaking the Stigma Surrounding Lung Cancer

Donnita: When I was about 11 months old, my mother had a professional portrait taken of me. She had me all dressed up in a pretty pink dress, but I was cranky and fussy.

My mother was a smoker. Back then, women always had their cigarettes in a cigarette case. She took her pack of cigarettes and put the pack in my hand. There for eternity is my beautiful baby photo with me sitting with a pack of cigarettes in my hand. That shows you how the norm was and how acceptable that was to do that. She thought nothing of putting a pack of cigarettes in my hand for a professional photo.

Sydney: Lung cancer is evolving and we need to get rid of this stigma. Too many times, when I tell someone of my diagnosis, the first question is: did you smoke? The answer is always no, but should that matter?

I find that there’s a general lack of empathy for lung cancer patients and that’s what translates into the resources that lung cancer patients have. The research is underfunded even though it’s the number one cancer killer for both men and women. Having younger and younger faces come up and showing that anyone with lungs can get lung cancer will help to break this stigma so that we can get the awareness that we deserve.

Calvin: None of us are standard anymore. You don’t need to be a smoker to have lung cancer. There are people still running triathlons who have lung cancer. If you think there’s something wrong, get checked and get tested.

Donnita: When I first found out I had lung cancer and when I first found out others who had lung cancer that didn’t have a smoking history, I felt incredible shame. Nobody should feel shame because nobody deserves lung cancer. Smoking is a very addictive habit. There are other risk factors too. I had the risk factors of exposure to radon and asbestos. I had a smoking history, but that does not mean that’s what caused my lung cancer.


The White Ribbon Project logo

Special thanks to The White Ribbon Project for its partnership.


Johnson & Johnson - J&J

Special thanks again to Johnson & Johnson for supporting our independent patient education content. The Patient Story retains full editorial control.


Lung Cancer Patient Stories

Yovana

Yovana P., Invasive Mucinous Adenocarcinoma (IMA) Non-Small Cell Lung Cancer, Stage 1B



Symptom: No apparent symptoms

Treatment: Lobectomy of the left lung

Dave B., Neuroendocrine Non-Small Cell Lung Cancer, Stage 1B



Symptoms: Two bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A



Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Heidi N., Non-Small Cell Lung Cancer, Stage 3A



Symptoms: None; unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Numbness in face, left arm and leg

Treatments: Targeted radiation, targeted therapy (alectinib)

Montessa L., Small Cell Lung Cancer



Symptoms: Chest pain, lingering cough
Treatments: Chemotherapy (cisplatin switched to carboplatin, etoposide), chest radiation, brain radiation (prophylactic)
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