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Lung Cancer Patient Stories The White Ribbon Project

Faces of Lung Cancer

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.


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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.


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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

Donnita, Sydney, and Calvin share their journeys with lung cancer, debunking the myth that only smokers are at risk. Despite quitting smoking 14 years prior, Donnita faced a stage 1 lung cancer diagnosis, while Calvin and Sydney—both never-smokers—also received shocking diagnoses.

These survivors emphasize that lung cancer isn’t just a disease of someone with a smoking history. Their stories encourage awareness, empathy, and early testing to prevent lung cancer from continuing to be the number one cancer killer.

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.

I was hoping that because I had quit smoking 14 years prior, I had mitigated my risk.

Donnita
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.”

I woke up one night feeling like I was having difficulty breathing.

Sydney

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.

If I had known four years prior when I was first getting sick, would they have immediately diagnosed and figured it out?

Calvin
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.

Sydney B.

You don’t need to be a smoker to have lung cancer.

Calvin
Calvin M.

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.

Donnita B.

Doctors on the Frontlines

Dr. Jeff Velotta, a thoracic surgeon, and Dr. Nasser Hanna, a medical oncologist, share their insights into the evolving landscape of lung cancer treatment and awareness. Together, they shed light on risk factors like secondhand smoke, radon, and air pollution, while offering practical advice on prevention and early detection.

They discuss the challenges of early diagnosis, the impact of stigmas around lung cancer, and the critical need for expanded screening criteria.

Introduction

Dr. Jeff Velotta: I’m a thoracic surgeon in Northern California. My wife’s a primary care doctor and we have two young boys.

In my first five years, I was operating almost every day and was always in the hospital. Even though I was mostly operating and seeing patients, I was interested in coordinating the research part of it with who I saw. I started that early but on the side. I was seeing a lot of women and a lot of nonsmokers with lung cancer. I thought, What’s going on here?

Dr. Jeff Velotta
Dr. Nasser Hanna

Dr. Nasser Hanna: I’m a medical oncologist at Indiana University. My wife Amy and I have four children.

After you’ve done this for a while and you’ve borne witness to the things that you’ve seen, like the patient’s difficulties and suffering, you wake up thinking about how you can make a difference.

I take care of patients two days a week. I lead a number of research efforts to try to find better treatments for lung cancer. I chair End Lung Cancer Now and we do a tremendous amount of advocacy work.

Early-stage lung cancer usually does not have any symptoms. They are only two ways that you can discover early-stage lung cancer: lung cancer screening and luck.

Dr. Nasser Hanna

Signs and Symptoms of Lung Cancer

Dr. Hanna: There are hundreds of thousands of people in the US right now who have lung cancer and don’t know it, and that’s because early-stage lung cancer usually does not have any symptoms. There are only two ways that you can discover early-stage lung cancer: lung cancer screening and luck. Unfortunately, we don’t get lucky very often.

Stage 1 lung cancer usually has no symptoms. It’s usually a radiographic finding on a scan. As the cancer advances, you can begin to have symptoms. I categorize them in two ways: local symptoms or systemic symptoms.

Local symptoms are things like the tumor irritating the airway and you cough, maybe the tumor bleeds and you cough up blood, or maybe the tumor obstructs an airway and you get short of breath.

Systemic symptoms are a general feeling of being unwell. You are feeling tired, losing strength, losing your appetite, or experiencing unexplained weight loss. 

chest X-ray
National Cancer Institute
CT scan of lung cancer with cavitation

Lung Cancer Screenings

Dr. Velotta: Women who are younger are unfortunately diagnosed at a later stage because there’s no screening test for them. We know that lung cancer screening is covered by the government, but you have to be 50 to 80 and either a current smoker or have at least a 20-pack year smoking history, which is a pretty significant amount of smoking history. To make it on top, you have to quit within the past 15 years. How many people can calculate that and figure that out? A lot of people don’t do that.

Women don’t smoke as much as men, but they’re more prone to getting cancer per se. However, they’re not getting screened because they don’t qualify since all the studies were done on men.

Lung cancer screening is the single most effective screening modality that we have.

Dr. Nasser Hanna

Dr. Hanna: Lung cancer screening saves lives. If we look at all of our cancer screenings—mammography, colonoscopy, PAP smears—lung cancer screening is by far the easiest to do. There’s no IV. You don’t have to get undressed. You don’t have to drink any prep. You can eat breakfast. You can take your medicines that day. You don’t even have to take your shoes off. There’s no poking, no squeezing, no prodding, no embarrassment. You literally lie down to go through a scanner and it takes 15 seconds.

Lung cancer screening is the single most effective screening modality that we have. The number of people needed to screen to save a life with a lung scan is far fewer than that of all other cancer screenings.

Being Diagnosed at a Later Stage 

Dr. Velotta: We have so many patients now who live for years and years with stage 4 lung cancer. Before, almost everybody was dead. Everybody was assumed dead in six months. This is totally not the case anymore.

People are living way longer than they used to. It’s not a death sentence like it was before. Yes, it’s still the number one cancer killer, but we’ve made huge strides particularly in late-stage lung cancer with better drugs, targeted drugs, and biomarkers, so people are living way longer.

I have patients who are at 10 years with stage 4 lung cancer. Five to ten years ago, you would never say that. With earlier stage, we’re doing better because we have better ways to catch it. We have more lung cancer screening tests and we’re coming up with blood tests to see if you have lung cancer. If we can catch it early, you can live a normal life.

stage 4 lung cancer
Cancer Research UK / Wikimedia Commons

We’ve made huge strides particularly in late-stage lung cancer with better drugs, targeted drugs, and biomarkers, so people are living way longer.

Dr. Jeff Velotta

Dr. Hanna: My youngest patient was 19. She was starting college. I won’t give out too much information because the family is still suffering pain more than 15 years later. Her grandmother died of lung cancer when she was 12 years old. She sang at her grandmother’s funeral. Seven years later, she was diagnosed with lung cancer and at the age of 21, she passed. I’ve had many, but you don’t forget your patients. She’s my youngest. I’ve had some in their 20s and too numerous to count in their 30s.

Dr. Jeff Velotta

Staying Positive

Dr. Velotta: Have hope and positivity. Surgeons tend to be a little bit more positive. We say we can cut the tumor out, but there’s always the possibility that it’s going to come back. I never say that. Let the patient ask.

The psychosocial part is so important. Patients care if they can communicate with you. They care that you listen to them. Honestly, a lot of them care if you’re positive or not.

With earlier stage, we’re doing better because we have better ways to catch it… If we can catch it early, you can live a normal life.

Dr. Jeff Velotta

Breaking Down Barriers 

Dr. Hanna: Lung cancer is unique in that it is heavily stigmatized. Patients feel guilt and shame. No one deserves lung cancer. No one brought it upon themselves. It’s cruel and inhumane for society to have the attitude of thinking someone got lung cancer because they were a smoker, and have more sympathy for someone who got lung cancer and never smoked.

We should feel equal sympathy for people who are victimized by this horrific disease and suffer incredibly. People with lung cancer unfortunately bear this cruel mark. It’s important to advocate for them. Most people with lung cancer aren’t even currently smoking. Most people have quit.

There are many causes of lung cancer. If you look at Asian women, 80% of Asian women with lung cancer have never smoked.  In this country, over 20% of women with lung cancer have never smoked. Why do they get lung cancer? Why do men who’ve never smoked get lung cancer? It’s because other things cause lung cancer. 

Other Risk Factors to Lung Cancer

Dr. Hanna: Secondhand smoke can cause lung cancer. If you’re in a workplace where you’re inhaling dozens of carcinogens or you have a family member who smokes who you’ve been around for decades, those can cause cancer. Radon is the most common cause of lung cancer in nonsmokers. And we cannot forget air pollution. Air pollution can cause lung cancer.

The other major risk for lung cancer is having a first-degree relative with lung cancer. If any first-degree relative was diagnosed with lung cancer—your mother, father, brother, sister, or child—then that greatly increases your risk. We should expand eligibility criteria for lung cancer screening because, believe it or not, 50% of people diagnosed with lung cancer don’t meet the screening eligibility criteria.


The Power of Us: The Story Behind The White Ribbon Project

Heidi, a lifelong health educator and fitness trainer, was shocked to be diagnosed with Stage 3A lung cancer despite having no symptoms or risk factors. Learn about the importance of early detection, the stigma surrounding lung cancer, and how advocacy is making a difference in the lives of survivors.

Introduction

Heidi: I was diagnosed with stage 3A lung cancer in October 2018.

I’m a lifelong health enthusiast, health educator, and fitness trainer. I’ve been married to Pierre for 38 years. He’s my high school sweetheart. He’s a retired primary care physician. We have three adult children who are all independent throughout the United States. We are now happy grandparents to two little girls, one from my son and daughter-in-law and one from my daughter and son-in-law.

Heidi and Pierre Onda
Heidi and Pierre Onda

How I Found Out I Had Lung Cancer

Heidi: My lung cancer diagnosis was a complete shock. I didn’t even have any symptoms that one would characterize as things you would look for with lung cancer. I had an ovarian cyst that seemed a little suspicious, which was unusual for my age, but what was shocking was a mass found in the upper lobe of my left lung and some plump lymph nodes in the middle of my chest.

I was told I had 4 to 6 months most likely and to get my affairs in order. I was in shock.

Heidi Onda

The Shock I Felt

Heidi: I was inoperable based on having multi-station disease, meaning the lymph nodes were in two different stations. The only treatment option I had was chemoradiation.

I couldn’t believe what I was hearing. How could I have lung cancer? I did not have risk factors or symptoms, so how could I be at a late stage? I was told I had 4 to 6 months most likely and to get my affairs in order. I was in shock.

Heidi Onda
Heidi Onda

Looking Back at My Childhood

Heidi: I was a goody-goody. I sat right next to the bus driver. I felt stigmatized back then. All the cool kids smoked and participated in this very common behavior even though they were not old enough. It was the cool thing to do. I was the kid who wasn’t invited to birthday parties and was never invited to hang out.

The irony is, all these years later, I am the one with late-stage lung cancer. It shattered a perception that I had of somebody who had lung cancer. I was also very embarrassed. Here I am, a health educator trained in prevention and my husband is a primary care physician trained in prevention. If we didn’t know that people without a smoking history could get lung cancer, why would we expect the general population to know that?

As time went by and I learned more, I began to realize that these were teachable moments. It was important to educate people. If we were not educated as people trained in prevention, the rest of the world would not either.

If we didn’t know that people without a smoking history could get lung cancer, why would we expect the general population to know that?

Heidi Onda

How I Started to Advocate for Lung Cancer Patients

Heidi: I was very focused on getting better and being compliant with all the treatments and everything that I should do to maximize the potential for the treatments to be successful. After over a year, I thought to myself, “I have not met another person with lung cancer. Why do I feel alone?”

I met a couple of people in Colorado who were much younger than me. While these young people were putting themselves out there and trying to get media attention, I was sitting on this quiet story that had been very self-serving. I wanted to get through treatment and see my children.

Heidi and Pierre Onda
Heidi and Pierre Onda

I started to think about our story: a health educator and a primary care doctor with no knowledge of this. My first thought was it was very irresponsible to stay quiet.

How did a very shy, introverted person end up sharing their story so loudly? That came later. We had efforts across the country. We were meeting up with advocates, survivors, and caregivers. When we asked healthcare teams what they were going to do for lung cancer awareness month, the responses were very dismissive. They said they would get back to us, but they never did. They were ignoring our outreach.

This came almost full circle in September 2020. I got an email saying that they have white lights in their parking lot that get turned on every night and their doctors wear white coats, so they recognize lung cancer more than any of the other cancers. I thought to myself, “Why was it okay to communicate with me disrespectfully and in such a humiliating manner because my cancer originated in my lung?”

Anyone with lungs can get lung cancer. No one deserves it. Today, there is great hope, even with a late-stage diagnosis.

Heidi Onda

Creating The White Ribbon Project

Heidi: I spend many of my waking hours advocating and that’s when the white ribbon was born. I screamed at Pierre to make me a big white ribbon out of wood to throw on the front door so I could get my neighborhood to understand. “Hey, remember me? This is Heidi, your local fitness trainer. Someone in this house has lung cancer and guess what? It’s me!”

Pierre: She started posting on social media and within a day, other survivors started seeing that, asking where she got the ribbon, and if they could have one as well. She asked me if I could make more. Then more requests started coming in and she started making them as well.

When she came into contact with other lung cancer survivors, caregivers, and lung cancer advocates, they got together and said, “Let’s work together on this.”

Heidi and Pierre Onda
Heidi and Pierre Onda

What We Stand For

Heidi: There are 3 main points that The White Ribbon Project wants to make sure everyone hears. Anyone with lungs can get lung cancer. No one deserves it. Today, there is great hope, even with a late-stage diagnosis. I’m sitting here, proof of concept that research matters.

If you’re eligible for screening, you want to get screened because it could get caught earlier and you’d be doing a lot better than I’m doing six years out. You have a high chance of hitting that 5-year survival or being cured with surgery if it gets caught early. Focus on the hope in research. We’re doing better and living longer. Screening is available and people need to know that this is all within reach.

Heidi Onda

Heidi: Aside from raising our family, this has become our life’s work. It’s important work and has been in the shadows for way too long. There is no excuse for it when it’s the number one cancer killer, which was one of the most outrageous things that I didn’t know and no one else seemed to care about that.

Pierre: I’m so incredibly proud of her. I feel bad because I don’t know if she realizes that I’m in awe of what she’s accomplished and how she’s channeled her anxieties and fears. If the roles had been reversed, I probably would have retreated inward and not gotten involved. I would have had a much more challenging time dealing with my condition and would not have spent my time as productively and not as grateful.

Heidi and Pierre Onda
Heidi Onda

Bringing Community Together

Heidi: Look at The White Ribbon Project as a flag. There were all these efforts in different silos going on, but what was missing was this symbol of hope for people to literally wrap their arms around.

Sometimes, I look at this white ribbon as trying to tie that whole community of lung cancer together—people with mutations, people with smoking histories, people without a mutation, people undergoing immunotherapy, people who have had surgery, and then all the key players that take care of us, like the advocacy organizations, the physicians, the nurses, and the healthcare teams. If we can all unify and work together, what could we accomplish?

We are accomplishing things. Getting people in organizations to work together seemed impossible. Now, we are watching this happen in real time and seeing progress. We are seeing positive change. We still have a long way to go, but the future looks bright.

Heidi Onda

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)
...

Categories
Chemotherapy Immunotherapy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Treatments

Ashley’s Stage 4 Lung Cancer Story

Ashley’s Stage 4 Lung Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Ashley, a 36-year-old mother of two, living in Northern California, shares her experience of being diagnosed with stage 4 non-small cell lung cancer.

Ashley had initially experienced trouble swallowing, chest pain, shortness of breath, fatigue, and swelling in her body. Prior to her diagnosis, she dealt with repeated misdiagnoses and medical gaslighting. Specialists brushed off her symptoms as due to work stress or anxiety, or misdiagnosed her with conditions like asthma, pneumonia, and long COVID. It wasn’t until a trip to the emergency room, where doctors discovered blood clots and conducted a CT scan, that her lung cancer was revealed. It took Ashley by surprise; she had no history of smoking and was otherwise healthy and very active and athletic.

Ashley reflects on the biases in healthcare, particularly against people who don’t fit traditional risk profiles for lung cancer. She explains how her healthy appearance and lack of smoking history contributed to doctors dismissing her symptoms for over a year. She believes that this is a systemic issue in healthcare, not just individual doctors’ fault. This is why she advocates for the importance of self-advocacy and trusting one’s body.

After her diagnosis, Ashley underwent chemotherapy, radiation, surgery to remove one lung, and immunotherapy treatments. She notes the importance of biomarkers in determining treatment for lung cancer. She does not have any biomarkers, which limited her options to immunotherapy, radiation, and chemotherapy. Her experience included serious side effects, including liver failure from immunotherapy. She had to stop immunotherapy and explored other treatment options, including clinical trials and further radiation therapy.

Ashley emphasizes the need for patients to advocate for themselves and seek second opinions. She shares her experience with various doctors, particularly the importance of one doctor making eye contact and truly listening to her concerns, which helped her feel validated.

Ashley’s journey has taught her the value of mental health support, palliative care, and integrative services, such as physical therapy and nutrition. She highlights the importance of having a support system, both in terms of healthcare providers and loved ones, to navigate the complexities of cancer treatment. Despite the challenges, Ashley remains proactive in managing her care and encourages others to stay informed and engaged in their treatment.


  • Name:
    • Ashley V.
  • Diagnosis:
    • Non-small cell lung cancer
  • Staging:
    • Stage 4
  • Initial Symptoms:
    • Trouble swallowing
    • Shortness of breath
    • Fatigue
    • Loss of appetite
    • Chest pain
    • Swelling in her body
  • Treatment:
    • Surgery (removal of lung)
    • Chemotherapy
    • Immunotherapy
    • Radiation

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


Thank you for sharing your story, Ashley!

Inspired by Ashley's story?

Share your story, too!


Related Cancer Stories

More Lung Cancer 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)
Categories
Alecensa (alectinib) ALK+ Chemotherapy Lorlatinib Lung Cancer Non-Small Cell Lung Cancer Patient Stories Targeted Therapies Treatments

Lindsay’s Stage 4 Lung Cancer (ALK+) Story

Lindsay’s Stage 4 Lung Cancer (ALK+) Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Lindsay W., a 42-year-old mother of two, shares her harrowing and inspirational journey with metastatic or stage 4 lung cancer. In March 2022, she began experiencing severe pain in her side. Initially, she thought it was a muscle strain, but after three agonizing days with constant pain, she decided to visit the emergency room, suspecting gallbladder issues. Although her blood work and initial tests seemed normal, further scans revealed fluid in her lungs and potential pneumonia.

However, Lindsay’s doctors made a more alarming discovery. They conducted a CT scan which led to a shocking diagnosis: cancer. Initially, the doctors suspected ovarian cancer due to an elevated CA125 marker, but further investigation revealed that Lindsay had non-small cell lung cancer with an ALK-positive mutation. The cancer had metastasized to her liver, bones, kidneys, brain, and lungs. Her stage 4 diagnosis was unexpected, particularly because Lindsay had led a healthy, active lifestyle and had never smoked, challenging her perception and the stigma around lung cancer.

Doctors initially gave Lindsay only a few weeks to live. At that point, she was frail, weighing just 112 pounds and struggling with extreme fatigue and inability to eat or sleep. But amidst the bleak prognosis, she started to undergo targeted therapy treatments, which provided a glimmer of hope. Her doctors prescribed the targeted therapy drug alectinib, which within two weeks, showed remarkable results, reducing or stabilizing much of the cancer. They also set her up to receive different types of radiation treatments.

However, by September 2022, the alectinib had stopped working, and Lindsay’s condition worsened dramatically, leading to a ten-day stay in the ICU where it was found that her cancer had spread even further. The spread included hundreds of tiny lesions in her brain, known as leptomeningeal disease, a particularly challenging condition to treat.

At this critical juncture, Lindsay transferred to Emory University Hospital, thanks to the intervention of her boss. There, her life was saved through intensive care and treatment, including the introduction of a second targeted therapy, lorlatinib. This treatment, too, worked swiftly, nearly eradicating the cancer within two weeks.

Despite the life-saving benefits of lorlatinib, Lindsay faced severe side effects, including extreme fatigue, edema, vision issues, and significant cholesterol increases. These side effects required her to take additional medications, including stimulants and statins. Yet, Lindsay remains grateful for the treatment, as it allowed her to continue living, albeit with ongoing challenges.

Lindsay’s journey is marked by her resilience and determination to live for her children, fiancé, and stepchildren. She emphasizes the importance of maintaining a positive outlook and manifesting health, crediting journaling and daily affirmations for helping her through the darkest times. Her story has inspired others, leading her to share her experiences on social media platforms like TikTok and Instagram, where she provides support and encouragement to others facing similar battles.

A key message Lindsay shares is the importance of advocating for oneself in the healthcare system. She stresses the need for patients to be proactive, informed, and unafraid to seek second opinions or change doctors if necessary. Her persistence in finding the right oncologist and treatment has been crucial to her survival.

Lindsay’s story is a powerful testament to the strength of the human spirit in the face of life-threatening illness. Her advocacy and outreach continue to offer hope to others battling cancer, showing that there is always a reason to fight and hope for a better tomorrow.


  • Name:
    • Lindsay W.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Stage 4b Lung Cancer Adenocarcinoma, ALK+
  • Initial Symptoms:
    • Severe pain in her side
  • Treatment:
    • Chemotherapy (targeted therapy): alectinib, lorlatinib
    • Radiation: SBRT cervical and thoracic spine and hip SRS radiation to brain tumor

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


Thank you for sharing your story, Lindsay!

Inspired by Lindsay's story?

Share your story, too!


Related Cancer Stories

More Lung Cancer Stories

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemotherapy (4 cycles), maintenance chemo (4 cycles)
...

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)
...
Categories
Alecensa (alectinib) ALK ALK Cancers Lung Cancer Non-Small Cell Lung Cancer Radiation Therapy

Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan W. profile

At 34, Dan was diagnosed with stage 4 ALK+ non-small cell lung cancer.

He shares the importance of patient advocacy, sharing your story and experiences, having doctors in your corner and willing to fight for you, and being honest and open with your children.

  • Name: Dan W.
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
    • ALK+
  • Staging: 4
  • Symptoms:
    • Cold symptoms
    • Shortness of breath
    • A little bit of tightness in the chest
    • Loss of voice
  • Course of Treatment:
    • Stent placement
    • Radiation
    • Targeted therapy

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things

Dan W. timeline

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


Dan W. and family in Halloween costumes

Pre-diagnosis

Introduce yourself a little bit

I like to have a great time. I try to see [the] positivity in things, even before [my] cancer diagnosis. I try and get along with a lot of people. I really want to have positive interactions with people that I come across, whether it’s just meeting them for the first time or just saying hi to someone. [I’m] very loving and outgoing.

[I have a wife and] two daughters. Francesca is seven and Georgia is five. The oldest one is named after [my wife’s] grandmother and my grandfather and goes by the name of Frankie.

My oldest is very outgoing [and] has to have social interaction [on] any given day or any given time. She’s very much like me. Always has something to say. She’s been talking as long as she could get a word out. She’ll talk until she falls asleep every night.

Georgia is very shy. She just turned five. She likes to hide behind us and [have] us as a sense of security. But when she’s out with friends, family and people that she’s comfortable with, she’s just as outgoing as Frankie is, so it’s great to see that side of her personality come out when she gets comfortable with people.

It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Initial symptoms

I started with cold symptoms about mid-November of 2018. Then the cold just wouldn’t go away. It progressed into shortness of breath, a little bit of tightness in the chest, [and loss of] my voice.

[I was] going to my primary care physician and just being pumped with steroids or inhalers — nothing seemed to work at any point and no additional tests were ordered. It was all the way until the very end of January [2019] that I was chasing my youngest across the dance studio and I was out of breath within steps. I had already exhibited symptoms of being out of breath easily doing other things, but I was always resilient to push through.

I had a telemedicine appointment and the doctor said, “You could have had a minor heart attack at some point. We need you to go to the E.R.” I went to the E.R. and a number of tests were done. It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Diagnosis

The doctor had come in to tell me, “You have a large mass in your chest. We’re pretty sure it’s cancer. And we think it’s lymphoma.”

My uncle had passed away from non-Hodgkin’s lymphoma just after six months of being diagnosed back in the mid-2000s and the first thought that ran through my head [was] what his kids went through. Not necessarily him but what his family went through because of the diagnosis.

It struck home for me right away and I knew it was serious at that point.

Things really get real and put into perspective when someone throws around a cancer diagnosis.

Receiving the news

I didn’t go to the hospital until about 10:00 or 10:30 at night. It wasn’t until two, three o’clock in the morning that the doctor had actually come back into the room in the E.R. I was by myself not thinking that anything was going on [and] wasn’t really scared going to the hospital in any way.

My wife stayed home with our girls because, obviously, they couldn’t stay at home alone. At that point, I called my wife and we had a family member come over and watch the kids. Then my wife rushed over as soon as she could.

Dan W. daughters at the beach
Thinking about your children

Children’s innocence was so prevalent in my mind at that point. The thought that they don’t know what cancer is, what it means… if they had to put their mind around something, it’s just probably going to be death associated with cancer.

The thought that my kids would grow up without a dad or without that influence in their life, it was really hurtful to me. Not that I ever took life for granted, but things really get real and put into perspective when someone throws around a cancer diagnosis.

How do I tell my children about my cancer diagnosis? »

They were four and two, so pretty extreme for them to hear that daddy has cancer.

Getting the official diagnosis

From the day that I went into the hospital, I would say 10 or 11 days later, we realized that it was non-small cell lung cancer. At that point, it was at least stage three and they were going to do some staging.

In the coming week or two, there were a number of different staging tests that I had gone through and biopsies to determine [if it was] stage three or stage four.

It was a snowy Tuesday. My wife, a school teacher, was home from school. I was working from home. We had received a phone call from the lymphoma oncologist as well as the interventional pulmonologist who had done the bronchoscopy to get the sample. They had given us three ideas of what it could have been — sarcoidosis, lymphoma, and lung cancer. We’re not expecting lung cancer, but here it is. We’re going to tell you it could be lung cancer, but we really don’t think it’s that.

When that Tuesday afternoon came and they called, they asked us to write some things down. Thankfully, my wife was home. They gave us the news that it was lung cancer; at that point, at least stage three. But I had a biomarker, a driver behind my cancer that was ALK-positive. We had no idea what that meant.

In a career that’s not medically related in any way and my wife being a teacher, we’re street smart at that point. She’s much more book smart than I am, but [we] immediately went to survival mode. Let’s start looking up what this means. Let’s see who to see in situations like this. Second opinions. Who do we go to? Who do we talk to? What are our resources and how do we navigate this new norm for us? Because, at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Dan W. and wife with fireworks
Reaction to the diagnosis

It’s kind of a blur, to be honest. There [are] so many vivid memories from a lot of the events that had taken place.

Your life is a whirlwind when you’re first diagnosed or when you’re going through some of those traumatic experiences [in] that you don’t remember everything. Some things stick out more than others, but I remember placing the call. I remember the doctor coming in, sitting on the bed, and saying that to me, but I don’t recall when she had come in.

I thought about my kids. Cancer sometimes runs in your family. Is this something that I can pass on to my kids? Is this genetic mutation something that would also be related to my brothers? I’m one of four. Do I need to have a conversation with them that they have to get screened?

What are my kids going to go through? I brought kids into this world not knowing much about cancer itself. Had I known before, would I still have brought kids into this world? Those were some of the thoughts that went through my mind.

[We] immediately went into survival mode… at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Later on, as I’m starting to additionally digest some of the information, it’s — How did I get lung cancer? Where did that come from? What have I done to expose myself to second-hand smoke? Not being a smoker or [having] a history of smoking myself, what environmental factors have I been exposed to where I’m susceptible at this point to lung cancer? [I] just couldn’t really hang my hat on anything specific.

The doctors assured us that from what they can tell, it’s not environmentally driven, but there’s a switch in your body, something went off. We don’t know what caused it, but we would say that would not be environmental.

It was a little troublesome to put myself in the position of looking at how that affected my kids and my family.

The more and more that we learn is crazy. The stories that we hear, the people that we follow, the people that we become connected with and friends with, being diagnosed at such a young age and then living a healthy lifestyle is completely difficult to fathom. At the end of the day, it just doesn’t make sense to us.

Patients share how they reacted to a cancer diagnosis »

Treatment

Radiation and targeted therapy

The plan was to radiate the largest mass in my chest, at the base of my mediastinum where it splits off to either lung. That would provide relief. Largest cancer site, let’s radiate it. [I] went through five sessions — Wednesday through Tuesday, [then] Saturday and Sunday off.

It wasn’t too bad. I’m pretty resilient so if I’m tired, I’m not necessarily realizing that I’m tired. I’m just pushing through things. Probably a good quality but, at the same time, probably a bad quality where you have to listen to your body and understand what it’s telling you at times.

Once radiation was done, we were starting [the] first-line treatment with targeted therapy. The idea with the targeted therapy was, hopefully, [my] quality of life would go back to where it was before and I’d be able to do the same things that I was doing with my kids, my wife, and in my personal time prior to cancer.

Find answers to popular radiation therapy questions and experiences of radiation therapy »

Undergoing radiation and targeted therapy again

Thankfully, living in the Northeast, [there are] two great hospital systems in Philadelphia. There [are] more than just two but I focused my care at two, [partnered] with some doctors in Boston, [and] continuously reviewed the plan [and] best course of treatment. How do we continue to move forward and be as successful as possible [in] navigating my diagnosis?

The idea was to do consolidated therapy. They were going to go to the right side of my lung — top and lower lobes — and radiate. They were going to radiate those sites with the idea that if progression does occur, it’s going to most likely go back to those original cancer sites. Since it wasn’t treated previously from radiation, they wanted to go back and just clean up those spots [and] make sure that there [weren’t] any residual cells there as well.

Find answers to popular targeted therapy questions and experiences of targeted therapy »

Dan W. and wife inside inflatable lungs
Importance of biomarker testing

Neither of us [has] a background in health care or in medicine so just what you see sensationalized on TV or if you have a family member or friend that’s going through something, that’s your exposure to it if it’s not part of your expertise.

Thankfully, we have access to great healthcare systems and that was the norm for them. We just said, “Hey, something’s not right.” And they said, “We’ll help you out. We’ll take the reigns from here and do what we’re supposed to do.”

Little did we know that meant biomarker testing and so on, but we’re thankful that that was done and identified very early on. Hearing other people’s stories, that’s not always the case.

Advocating for yourself

You hear nightmare stories where people just go straight to chemo and certain cocktails of treatment options that are used in lung cancer can be fatal for someone who is ALK-positive. Right then and there, knowing that you’re giving something to someone from a therapy standpoint that could actually kill them before it could even help them is troublesome.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way.

You just have to advocate for yourself. We did early on not knowing what we were going into and what we were navigating at that point. But it was very important for us to pull together doctors that would be in our corner and would fight for us. It wasn’t about them. It was about us as patients.

We actually had not a great experience with the hospital that I went into when I was first experiencing symptoms. We left with the intention of never coming back.

We had an oncologist come into the room the day after I was admitted and just said very vague information, didn’t have much to give from an outlook standpoint or what was going on, or what he thought was going on.

When you go to the doctor and you break a bone, you’re used to looking at an X-ray, right? You’re expecting. We did a CT scan [so we were expecting], “We’re going to show you the CT scan, what we’re looking at, and what’s going on.” He said, “I don’t read pictures.” And we were like, “What do you mean? You’re an oncologist. How do you not?” “Oh, well, we have people that do that. I don’t.”

We lost a lot of hope right then and there for any proper guidance from him as an oncologist, even just from a general standpoint. We had asked them to leave. It was a very difficult situation for us. But, thankfully, [the] interventional pulmonologist followed up and came into the room a short period later and was able to explain some things to us as to what he was seeing and navigate those scans with us.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way. You get very turned off. We left a few hours later from that hospital with the intention of never coming back there.

Hear from cancer patients on what self-advocacy is and how they advocated for themselves »

Targeted therapy

I’m on targeted therapy called Alectinib. I’m very fortunate to have that accessible to me and have insurance that does cover a large portion of the cost because it is very expensive, but I’ve responded very well to it.

I have [had] stable scans since the spring of 2020, so very relieved to get that news and, hopefully, continue to get that news every quarter. It’s allowed me to be a dad. It’s allowed me to have manageable side effects, fortunately for me. I know it reacts differently for everybody.

How does Medicare cover cancer? »

Dan W. with wife and daughters

There were times early on that were very difficult. It’s a fine balance — what the medicine was doing to my body and how to react — to find that comfort zone of taking it and what am I eating that’s affecting my body. It was tough, but we’re in a much better spot now.

Eating healthy during cancer treatment »

Side effects from Alectinib

The biggest one that I’m challenged with now is being out in the sun. [I’m] very susceptible to burn and being outside as frequently as I am — I don’t like to be indoors at all. I could never live in a big city because I would never see grass. I’ve always got to be outside, so that’s very difficult.

High UV rays, going to the beach — I’m always wearing long sleeves, I’m always wearing a hat, and trying to cover up. Even in early spring, 10 minutes out in the sun on a high UV ray day, I’m getting what feels like chemical burns on my hands, on my face, on my head, and it’s difficult.

Bilirubin levels, liver functionality. There [are] a number of different known side effects that come with the therapy that I’m on so it’s all things that I’ve navigated earlier on than now but continuously monitoring that through blood tests every month.

Find out directly from cancer patients what side effects they experienced after undergoing treatments »

Everybody needs advocacy. Everybody needs a platform.

The White Ribbon Project

We’re very active on social media. My wife had seen something and had reached out to Heidi to get a ribbon to display. I didn’t really know much about it, but I’ve had numerous conversations with Heidi.

Heidi’s visions are amazing. It’s not to say that it can’t mean something different to someone else that’s involved. When someone goes and displays a ribbon, if it’s on their front door, [it] could be in support [of] someone else in their family or a friend. It may not be them. How they’re advocating or showing that they’re supporting someone or the community can be different.

When we received our ribbons, we received three and I delivered two to both healthcare systems that I was receiving care at in Philadelphia and then we kept one for [ourselves].

Find out more about The White Ribbon Project »

What does it mean to you and your family to have that?

To me, my thoughts are all-inclusive. Everybody needs advocacy. Everybody needs a platform to push whatever cancer they would like to push from an awareness standpoint. It just so happens that I have lung cancer so when I talk about cancer, it’s probably going to be about lung [cancer] and my experiences and experiences of the individuals that we’ve come across since our journey began.

It’s so important to tell your story and what that means for us is not just for us; it’s for everybody.

It’s so important to cherish that time and experiences that you do have together.

Dan W. and family at Links for Lungs Foundation event
Sharing your cancer story from a father’s perspective

It’s been powerful. It definitely puts things into perspective when it comes to life. What to be upset about, what not to be upset about. It’s okay to get upset still about little things but at the end of the day, it’s so important to cherish that time and experiences that you do have together.

I found sharing my experiences or my story has paid off for other individuals to put things into perspective for them, whether they’re going through something or not. You can always take something from an interaction with someone else and apply that to your own life.

I feel as though we’ve gotten feedback as to how we have navigated this and how we continue to tell our story and help other people [and] how powerful that is to other individuals.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

Living with cancer as a parent with young children

Very early on, we received some guidance, to be honest with them. At that point, they were four and two so pretty extreme for them to hear that daddy has cancer. They don’t know what that means so to them, that’s their new norm – Dad going to appointments and whatnot.

We’ve been honest, open, and talk to them. We’ve also shared experiences where there’s the dark side of cancer, but there [are] so many good things that come from sharing your story and putting yourself out there where other people rally around you within what we call our village. Feeling the love from that is pretty special.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

I thought [my] quality of life was going to be very poor and I thought the outlook was very poor. But the further we get through this journey, the outlook continues to get pushed out. The further we get, the further that outlook is going to exist.

Is this where I thought I would be? No. I thought [the] treatment was going to be different. But continuing to advocate for us, myself, [and] my family has always been my number one goal. Keeping things as normal as possible for my kids [and] being able to grow from these experiences was very important to us early on.

Learn from other patients about how to talk to kids about cancer »

Being involved in the children’s lives

A lot of bad things come through the pandemic but one of the good things is I get to spend more time with my kids.

Being able to drop Georgia off at school every morning, taking Frankie with me, coming home, putting Frankie on the bus, and then going and picking Georgia up at the end of the day — I can’t describe how important that is for me just to have that interaction and talk to her. When I pick up Georgia, I just talk to her about her day and see what made her happy and what made her upset that day, whatever it was. Just [having] that positive interaction with her is pretty special.

I coach both their soccer teams. And I think, selfishly, with my knowledge and experience with soccer, being able to coach and share that interaction with them is pretty special for me as well.

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things.


Dan W. and wife
Thank you for sharing your story, Dan!

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Non-Small Cell Lung Cancer 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)

The White Ribbon Project

Lauren C. feature profile

Lauren C.



Symptoms: Chronic wheezing, difficulty breathing, recurrent pneumonia and bronchitis
Treatment: Video-assisted thoracoscopic surgery (VATS)

Dr. Michael Gieske



Background: Doctor fighting for early lung cancer screening story Focus: Encouraging more screening for lung cancer

Heidi Nafman Onda



Background: Diagnosed with stage 3 lung cancer, started The White Ribbon Project to push awareness of anyone with lungs can get lung cancer
Focus: Encouraging lung cancer story sharing, inclusion of everyone in the community

Dave Bjork
Background: Underwent stage 1 lung cancer surgery, in remission for decades, hosts own cancer researcher podcast
Focus: Encouraging lung cancer story sharing, passionate advocate for early screening and biomarker testing

Categories
Cancers Keytruda (pembrolizumab) Lung Cancer Non-Small Cell Lung Cancer Stereotactic body radiotherapy (SBRT) Xalkori (crizotinib)

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy was diagnosed with stage 4 non-small cell squamous lung cancer. She shares the importance of finding the right doctor, her experience with hyperprogression, and switching regimens mid-treatment.

Amy G. timeline
  • Name: Amy G.
  • Diagnosis:
    • Non-small cell squamous lung cancer
    • MET amplification
  • Staging: Stage 4
  • Initial Symptoms: Lump in the neck, felt run down
  • Treatment:
    • Keytruda
    • Stereotactic Body Radiation Therapy (SBRT)
    • Cryoablation
    • Crizotinib
Amy G.

After [telling] my story and [hearing] everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed.


Table Of Contents
  1. Video
  2. Pre-Diagnosis
  3. Testing
  4. Diagnosis
  5. Finding the right doctor
  6. Treatment
  7. When did you learn about the MET amplification?
  8. What are bone mets (metastasis)?
  9. Process of radiation therapy
  10. Changing the course of treatment
  11. Biomarker testing
  12. Targeted therapy
  13. Responding to the treatment
  14. Follow-up plan
  15. Living life after a cancer diagnosis

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


Video

Amy G. dogsitting

Pre-Diagnosis

Tell us a little about yourself

I grew up in the Philadelphia-Delaware-New Jersey area. For most of my life, I actually worked in oil refineries. I was pretty much everything — secretary right up to machinist.

I really enjoy riding my bike. My current job now is walking dogs and housesitting for people… Believe it or not, that’s a really lucrative business.

What were your first symptoms?

Back in November of 2018, I had a flu shot and [it was] no big deal. I’ve never had a problem with a flu shot before.

In two weeks, a lump had come up on my neck in a strange spot. I knew it was a lymph node. I just assumed that it was from the flu shot. Didn’t think it was anything more than that.

I felt a little run down, but nothing big. For about a month, it had stayed there, so I had decided I’d better go call my primary care doctor.

For some reason, I just knew. I knew it was lung cancer. I just felt it. All I could hope is that it was an earlier stage.

What did the primary care doctor say?

She originally took a blood test just to see if there was anything that would show up… The blood test only showed a small increase in my calcium; didn’t think much of it.

She decided that I needed to get a CAT scan done on my lymph node. During that time, [the scan] had caught the top of my lung, my right lung, and had shown that there was a spot there.

Testing

What’s going through your mind during the tests?

I was incredibly nervous. For some reason, I just knew. I knew it was lung cancer. I just felt it.

I had no other issues. I had always known that lung cancer doesn’t really show any symptoms until it’s almost too late.

All I could hope is that it was an earlier stage.

What were the next steps?

The next step after that was I had to have a biopsy. I had a CT-guided biopsy of my lymph node, which at that point showed that it was lung cancer, squamous lung cancer. We didn’t have it staged at this point.

After that, they sent me for a PET scan, which showed that I had it in other areas.

All I wanted to do was figure out a plan to get it going.

Dealing with the wait for results (“scanxiety”)

I’ve been kind of lucky. My doctors have had a really fast turnaround. The CT-guided biopsy took maybe 20 minutes at the most. It was awkward. I was worried.

I had results within about 5 hours. But during that time, I still knew that it was cancer.

All I wanted to do was figure out a plan to get it going.

Diagnosis

Getting the diagnosis

It actually was on my birthday in December of 2018. I was driving somewhere and my doctor had called me and said, “We have your results.” And she said, “Are you with someone or are you at home?” Right there, I [knew].

My life has been so good up to this point. All of a sudden, just one little thing turned out to be pretty major.

Amy G. and husband

I said, “Since you’ve kind of let it off that way,” I said, “Just tell me now, I’m at a stoplight.” At that point, she had told me I had stage 4 non-small cell squamous lung cancer.

I had turned around and called my husband because he was at work. I’m in tears because at this point, “Oh, now it’s real. It’s really real.”

In my mind, I’m thinking, “My life has been so good up to this point. I have everything. I have my husband. I have a house. I have a dog. Everything is going great.”

All of a sudden, just one little thing turned out to be pretty major.

How did you break the news to your family?

I just told [my husband] outright on the phone. I said, “I have lung cancer.” The next thing I know, he hung up and came home. He couldn’t handle it as much as I couldn’t handle it.

I knew I had to tell my parents. My parents were the second group of people I had to tell. I didn’t want to tell my mom first.

My dad has gone through so many medical issues that I figured he’d be easier to talk to about it. I called him up on the phone. We talked for a good half hour about it. I didn’t have plans on what I’m going to be doing but he just kept saying, “It’s going to be okay.”

At this point, ‘Oh, now it’s real. It’s really real.’

Getting a second opinion

It basically was, “We have an oncologist that you can go to to discuss this.” I went to this oncologist and, funny enough, I didn’t like his bedside manner, so I decided to get a second opinion.

The second opinion basically was to get a new oncologist. I ended up going all the way to a new medical group. It’s kind of a community, but more midland. I ended up going to a pretty old university teaching hospital afterward.

I found a better oncologist who again told me the same thing he did. There was no change.

Finding the right doctor

You definitely have to have someone who not just treats you as a patient, but more can be a friend, I want to say? Somebody you can tell everything to because you’re going to have to throughout your cancer journey. You have to definitely have a doctor that you jive with.

You want to be able to ask questions. With the first oncologist, I didn’t feel like I could ask questions. It was more like, “This is what you’re going to do and you’re going to like it.” And I didn’t really want that.

[I went to the] University of Penn [and saw] a hematologist with a specialty [in] lung cancer. He’s not specifically for lung cancer, but his specialty is lung cancer.

Open lines of communication

They make it so easy to get ahold of them. It can be at 3:00 in the morning and they’ll still answer you.

[My doctor, Dr. John Kosteva,] texts me and I can text him, [but] not very often. We also do emails and we have our patient portal where it goes directly to them immediately.

Importance of access to information and knowledge

You definitely have to self-advocate. I know there [are] smaller cancer centers out there in the world where you’re not close to a university hospital conglomerate. What I would say is do take the time to go to one, even if you have to travel, but also bring the information back to your smaller cancer center so that they know that that can be done.

Treatment

Treatment options

The first oncologist had basically told me, “We’re going to do Keytruda immunotherapy. That’s what we’re going to do and we’re going to start next week.” That was basically it, which I liked. I thought, “Oh, that’s nice.”

His personality didn’t work for me. It’s almost like he had seen so many people with cancer [that] it was more of a dollar thing than it was a feeling thing.

At this time, we did not know that it was MET amplification. At this point, we only knew that it was stage 4 non-small cell squamous. He said, “The gold standard is Keytruda. Just Keytruda, nothing else. However, there is a clinical trial,” so I had to make the choice of whether I wanted to do Keytruda or the clinical trial.

How did you feel about possibly joining a clinical trial?

My fear was being new to the cancer world. I had worried [about the] clinical trial being new and not really much known about it. Whereas Keytruda had some data behind it, so I knew the side effects.

She had explained to me the better choice would be to go with what’s already known, to try that out first, and that there’s always a clinical trial further down the line.

You’ll never know whether a drug works or not unless you try it. I figured at that point, that right there was my biggest thing, was you’re not going to know how it works until you try it.

My doctor had handed me the paperwork: one for Keytruda [and] one for the clinical trial. The clinical trial was actually a lot thicker than the Keytruda one.

The side effects that were for Keytruda were your normal digestive issues, rashes… [there were] some funny ones in there.

As it turned out, I ended up having hyperprogression, which is also a side effect [that] had happened to me.

Efficacy of the Keytruda treatment

I had heard about [Keytruda] because six months before, they had the ads on TV. It kind of pushed my thought that, “Wow, these people are doing really good. That’s going to be me. It just has to be me.”

The way they explain it is that a lot of people do very well on Keytruda. I don’t remember the same exact numbers, but it was high. It was high enough for me to say definitely. Try it for that.

Video
Amy G. 1st Keytruda infusion
Describe the Keytruda regimen

Keytruda was done by infusion. Every month, I would go into the cancer center and they would just infuse me with Keytruda. It took half an hour. It wasn’t long at all.

Right after the Keytruda, I would get a shot of Xgeva, which is a bone strengthener because, at this point, we had found out that I was starting to get bone mets so he didn’t want me to break any bones. The Xgeva was important as well.

What did you have to do before the Keytruda infusions?

Usually what they would do is they would do the labs to make sure that your liver and your kidney and everything is working like [they’re] supposed to [work]. Then I would see my doctor and after that, I would go to have my infusion done.

When did you start to feel side effects?

The first time I had the first infusion, I had a panic attack when I got home. I’m kind of funny when it comes to drugs [where] you don’t know what to expect, so I tend to worry about it and it caused my own side effects.

I had a panic attack the first time and then about three days afterward is when the GI problems would start. The rashes started about a month afterward.

What helped you manage the GI problems?

When I first started having the GI problems, I had texted [my doctor] and they have a nurse navigator there who pretty much will answer all the questions. They prescribed me several different types of nausea meds [as well as] several different diarrhea medications along with anything I could get off the counter. Basically, they would throw everything at it and use what worked.

The nausea medication worked fairly well, but I noticed that I also had a funny taste in my mouth. I ended up going and getting something called Tummydrops, which are peppermint hard candies, and [they] worked very well to get rid of the nausea.

It was funny because my mom had come up from Florida, so she was trying to take care of me. She would always want to feed me and I wanted nothing to do with eating anything. I’ll take a popsicle and that’s it.

I had this sugar rush for a while because all I could eat was ice cream popsicles. That’s the only thing my stomach could handle.

[That lasted] the whole time I was on Keytruda.

Describe the rashes

I had a rash on my chest and a little bit on my legs. They itched real bad. I ended up using Aquaphor, which worked well. I also had steroids, in case I needed to take that. I never really did because it never got that bad.

They would break open. Almost blistery type. [It was] more of a nuisance.

It never went away. It always stayed there until I stopped Keytruda. Once I stopped that, it went away.

Severe fatigue

[There was also] severe fatigue. But I couldn’t figure out if that was from the drug or from me not eating correctly. I wasn’t sure what it was.

My doctors were on top of everything. All the medication they thought I might have to have was already ready for me.

Other side effects

Another side effect I had — that I honestly don’t know if it was because of my age — it seemed that Keytruda stopped my period. I now had a weakened urinary tract, so I would pee. I would always have to wear diapers just so I didn’t do that.

The only other side effect I had, which was helped by something called Silvadene, was I did get burned. I did have [burnt areas] in my groin area. But the doctor previously had prescribed me Silvadene because they knew that might happen.

The good thing about my doctors is they were on top of everything. All the medication they thought I might have to have was already ready for me.

When did you learn about the MET amplification?

That happened on my last infusion of Keytruda. The doctor had decided to take some blood to do the biomarker testing to see if I had any.

The strange thing, he had told me, is that there usually [aren’t] a lot of people with biomarkers that have squamous lung cancer. I didn’t think anything was going to come back. It took a couple of weeks to get it back.

Back then, I think it was a 6- to 8-week wait till you found out. And that’s when I found out that I had MET amplification and I couldn’t have been happier.

What are bone mets (metastasis)?

[Bone mets] basically means the cancer is in your bones. It’s eating it. It’s the best way to explain it. They can break very [easily].

[I had] extreme pain. No amount of opioids or anything could help that pain. We tried. Nothing worked. The opioids did help to let me sleep more so I could avoid the pain sleeping but you still had that pain constant.

It is [really tough], especially where I had them. I had them in my femur. I started off with a cane, then I went to a walker, and then I ended up in a wheelchair. It was bad [for a] period of about a month and a half.

Side effects of Xgeva

Not that I noticed. The only thing was a pain in your arm… and it was pretty bad. It wasn’t your normal [when you’re given] a shot [and] it hurts. No, it was bad in the arm. But other than that, no side effects that I could tell.

If you have pain and you’re a cancer patient, get the opioids.

Opioids for cancer pain

On top of that, I was taking the opioids for my own metastasis. I was taking something called Xtampza, which is a long-acting oxycodone. I was taking oxycodone for breakthrough and I was also taking Ativan to help. There was a lot.

I had asked my doctor, especially about the opioids. He said in most cases, a lot of cases, cancer patients, especially stage 4, do not get addicted to opioids.

If you have pain and you’re a cancer patient, get the opioids. Don’t be worried about getting addicted. I never did and I was taking them 24 hours a day. I had no issue.

As for taking any other drug, it kind of comes with cancer. You have to try it and just know that there are doctors and medications that can help you get over that hump.

Video

Process of radiation therapy

The radiation therapy was about a month.

It was during the time I was on Keytruda, about [midpoint]. At the time, I had started getting a met in my femur. We didn’t know how bad it was, but the radiation was done on my hips and my femur at that time.

It was an easy process if you want to say. They build a mold around your hips so that you won’t move. There was no pain associated with the actual radiation itself [but] because of the bone met in my femur, the pain was incredible but had nothing to do with radiation.

[The radiation session] was every three days. [Each session lasted] about half an hour. It took me more time to put on a gown because I could hardly move. I was in a wheelchair. I couldn’t take my clothes off. My mom had to help me.

My doctor decided that Keytruda wasn’t working. We have to try something else.

Changing the course of treatment

What drove the decision to take you off Keytruda?

I was on it for three months and the catalyst was my third-month PET scan, which showed I had it everywhere. Besides my lymph nodes, I had it in my shoulder, I had it in my adrenal glands, my ovaries, my ribs, my fingers, my hips, my femurs, and one foot.

At that point, he decided that Keytruda wasn’t working. We have to try something else.

Dealing with the news emotionally and mentally

It was hard. Just based on how I felt physically, I thought that April of 2019 was my last day or last month on Earth. I felt so bad.

When the doctor told me that, I thought, “Well, that’s it. I might as well get everything in order. Do what I want to.”

Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

I had slipped into a severe depression. I had asked my primary care doctor to put me on antidepressants.

In the meantime, I was still on Ativan because that helped with my anxiety. They switched that over to something called BuSpar, which helps my anxiety as well.

It was not only physically did I think April was my last month. Mentally, I wanted it to be my last month. I was not only just in that amount of pain, it was the whole, “How long do I have?” Tell me that. Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

Amy G. tunnel

The antidepressants definitely helped to pick me back up and make me more hopeful.

I couldn’t sleep, even though I was forced to sleep. You didn’t really sleep well. There was no relaxing. I would go to the grocery store and say, “What’s the point of doing this? Why, why, why? There’s no point.” Even everyday things just seemed pointless.

The antidepressants definitely helped to pick me back up and make me more hopeful.

Was there anything else that helped with the depression?

The biggest thing that helped was Facebook. I found a bunch of lung cancer groups and there were people that had been through it. Same thing as I’ve been going through.

Over time, after I told my story and heard everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed. To put it out there, to help other people get through that, and know that they have a chance really, really made my life more worthwhile.

I did nothing but sleep all day. Everything hurt.

Biomarker testing

How did you deal with the scanxiety?

I grew up with a mother who always told me that you can’t worry about things [where] you don’t know is going wrong. It’s only going to hurt you more than anything. I’ve always tried to live by that.

I don’t really have anxiety but waiting for the biomarkers was a little testing because, at this point, I had lost so much weight. I was down 40 pounds.

I did nothing but sleep all day. Everything hurt. I had a rash covering my chest, so I really needed to get off Keytruda.

Getting the biomarker results from the doctor

[My doctor] said, “It’s rare that squamous has a biomarker, but you have it. And the good news is that there is a drug that works for it.” I was so excited and I’m like, “Oh okay, how long do I have to sit in a chair?” He’s like, “No, it’s a pill. You take a pill, a pill twice a day,” and I’m like, “Oh, this is great!”

Then I said, “Okay, well, what’s the side effects?” He started explaining to me and I’m like, “All right, they’re not that bad. It seems like the Keytruda ones were worse.” I thought, “All right, I’ll try it.”

[The] fact that it’s a pill now just thrilled me to death because now I didn’t have to travel back and forth and worry about all that. I could take it at home. Best thing ever.

Targeted therapy

Difference in quality of life with the pill

When you tell people about it, they’re like, “That’s not possible.” Yeah, it is. Yeah, I take a pill. People that are new to lung cancer don’t know that there are pills that you can take to help keep it at bay.

Importance of biomarker testing

[Ask those questions], absolutely. I’m still trying to learn at what stage they will do biomarker testing because I think they don’t really want to do it on the stage one, stage two. Three and four, more than likely they will do it.

I’m hoping that they start doing that earlier because it makes more sense. But that’s out of my hands at this point.

Side effects of Crizotinib

The first week, I was put on 500 mg — one pill in the morning and one pill in the evening. I started having very bad GI issues again and I’m thinking, “Oh, here we go.”

My doctor got the smart idea. “Let’s cut you in half.” I said, “Okay,” so I only take one pill a day.

The only side effect I had, and I don’t know how to explain this, is if I went from dark to light, I would have like a trail. I could see the door going sideways for a little more than it should. I don’t know how to explain that. It was strange but I thought, “Oh, this is all I have to deal with. I can do this.” It only happens sometimes.

It does cause visual disturbances. They don’t really explain that so much. You could lose your eyesight, which I didn’t have that problem with, so I just had those trails.

It lasted for about a year.

[I told my doctor] and he said it was normal for Xalkori or Crizotinib. If it got worse or it became where I was starting to lose my eyesight, then we would have had to do something different.

I did [check in with an optometrist] because I had to get my eyes checked anyway. In the meantime, I told them about trails and that it was probably a side effect of my drug. They didn’t see anything in my eyes to say, “Okay, you’re going to lose your eyesight.” There was nothing there.

GI issues with Crizotinib

It was mostly vomiting and some diarrhea, but it ended up being diarrhea for like a day. Then it was constipation for days on end.

I tried everything — and I mean everything — to get rid of the constipation, which was harder than stopping the diarrhea.

[I tried] everything in the store. I tried prunes. I tried prune juice. I used to have milk intolerance or lactose intolerance, so I would drink massive amounts of milk, eat a lot of ice cream, thinking that’ll loosen it up. No, nothing, did nothing at all.

If you’ve ever seen raccoons when they have their babies, they tend to rub their stomachs, lick their stomachs. I was actually pushing on my stomach to get it moving, which worked but not easily.

The GI issues went away immediately along with all the other things.

SBRT and cryoablation

SBRT is stereotactic body radiation, which means you get stronger radiation to a smaller spot instead of the whole area. I had five SBRT sessions on my lung to shrink [the tumor], but we wanted to kill it. Who knows? It might be dead. It may not.

As for the cryoablation, that is interesting. You go into a bit of a twilight. It’s like three needles or so. They go in and they freeze the tumor on your adrenal gland.

It only hurt for a second, but when I banged on the table, the nurse knew so she upped my twilight a little more. I couldn’t talk. For some reason, the words wouldn’t come out, so I just thought I’ll bang on the table. So if you ever do encounter that, bang on the table.

I had no pain afterwards. There was no recovery time or anything to it.

The SBRT was done five sessions one time so it was over five days. Then the cryoablation was done once and that was a one-shot deal.

Responding to the treatment

In April of 2019, I thought I was gone. The first week of Crizotinib, it was a little rough. The second week, all of a sudden, I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

It’s such a great feeling to know that it worked that fast and even my doctor really couldn’t believe it. It doesn’t seem possible. But the fact that I could feel it. It wasn’t just my brain saying, “Oh, you feel better because you’re taking [medication]…” like a placebo effect. It wasn’t that at all. I knew I physically felt better. I mentally felt better. I knew. It was a good drug.

I could walk again. I was out of the wheelchair. [I could] eat and drink [with] no problem.

I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

Amy G. giant wooden chair
Feeling somewhat like yourself again

You have the hope. You’re thinking, “Wow, I physically feel like that or mentally feel like that. I can live like this. I can go about my everyday life and enjoy things again.”

I just kept calling it the miracle drug. Even my family, my family called it. They’re like, “Ame, you were stuck.”

I could not walk up the stairs to take a shower, so I hadn’t taken a shower for almost six months. I didn’t sleep in my bed. I slept on the recliner downstairs and only slept lying on my back because [of] my femur.

Everything was broken at the time. [I] had all the issues. But it’s [a] miracle drug.

I keep going and asking [my doctor] if I’m boring… He said I’m the fastest turnaround he’s ever seen.

Follow-up plan

Follow up with PET scans

[I have a PET scan] once every four months now. Back then, it was once every three months for a PET scan and then once every six months for a brain scan, for an MRI.

The PET scan, after being on Crizotinib for three months, came back and the doctor was like, “Look at this!” He showed me on the screen and he said, “This is what you look like before. Look what you look like now! This is gone. This is gone.”

I was just thrilled. I was like, “Oh, I knew it.” I said, “The way I felt physically, I knew it had to have been doing something.”

I’m mad that [my body] didn’t let me know before I had it, so I knew ahead of time to push my doctor more about the symptoms. When I think back now, the pain in my shoulder a year before I got diagnosed probably was a symptom of lung cancer [but I] didn’t know it.

Right now, I believe [they’ll be doing the brain MRI] indefinitely. The PET scans are now [every] four months. I did go up once and that’s indefinitely as well.

I’m stable. It hasn’t grown and that’s all I want to know.

Stable but not yet NED (no evidence of disease)

At this point, I still have a light up in my lung and a light up on my adrenal gland. But again, the doctor said that could be dead tissue or the radiation may still be working and we just don’t know. I’m stable. It hasn’t grown and that’s all I want to know.

I continue on Crizotinib until either it stops working or becomes toxic. Right now, I’m stable and I’m happy to say that’s what I am and I hope it continues to work. We’re on three years of stable, so that’s a great thing.

The Facebook page [of lung cancer groups], you tend to get attached to some people and you think, “Oh, they were diagnosed the same time I was.” Then you realize that they passed and you just don’t understand how they did when they had the same exact cancer as you. So to think that I’m alive is wonderful but sad in that effect.

I know [my doctor] talks to his tumor board regarding me. I don’t know how often. I’m assuming every time I have a PET scan, he’s like, “Well, she’s still boring.” We’re hoping — knocking on wood now.

Crizotinib’s been around for a long time. That was one of the first targeted therapies they had come around with, I believe it was maybe 2013 it came out. Could be wrong on that date, but it’s still been around for a very long time. But the squamous with a MET amplification is a shocker.

Never give up and always hold on to that hope.

Amy G. butterfly

Living life after a cancer diagnosis

You definitely have to enjoy every day; actually, every second. Even the bad stuff, you still need to enjoy it because it may not be there for long.
Also try not to be nervous about your scans. It’s not going to help anything at all and may actually make things worse. If you’re really, really upset and your anxiety is through the roof, definitely call your primary care doctor to have help with that.

Never give up and always hold on to that hope. If you don’t like an answer a doctor gives you, try another one. Get a second opinion. Get a third opinion. You have time. You just have to find the right doctor.

Just hang on to hope.


Amy G.
Thank you for sharing your story, Amy!

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Non-Small Cell Lung Cancer 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)
Categories
ALK Cancers Lung Cancer Non-Small Cell Lung Cancer

Shyreece’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Shyreece’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Shyreece

Shyreece Pompey dedicated her life to teaching kids. Outside of her family, it was her whole world. Then came the shock of her life: a stage 4 lung cancer diagnosis for this mother and grandmother with no history of smoking.

8 years later, Shyreece is thriving as a different kind of teacher. She is lifting others through her own experience and lessons learned since her diagnosis in 2014, like the importance of patients advocating for themselves, ensuring they get comprehensive biomarker testing that could shift their entire treatment path, the importance of clinical trials, and understanding her experience as a Black cancer patient.

Thank you for sharing your story, Shyreece!

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


Video (Part 1)

Introduction: Tell Us About Yourself

One of the things that I like to talk about is that I loved teaching before I was diagnosed with stage 4 cancer. I loved teaching so much that it became a part of me.

Now, even after diagnosis, I still teach. The art of teaching, the philosophy of teaching, and everything about teaching is what I love. I did that for probably about 17 years, professionally and even in other aspects in the community.

If there was a teacher needed for something or a class to be taught, I taught. I’m a bona fide teacher at heart, and I think that part of me is a part of me that can never go away. I don’t want to get too deep, but it will always be a part of me. 

That is my legacy, just everything that I’ve had to overcome. Teaching is it for me. The people that I come across today, I still teach, but in very, very different ways. In ways that allow them to be their best person.

I was scared, and I said, ‘Something’s not quite right.’ Then I heard a wheezing sound that came out of my body. I said, ‘That’s something that I’m not controlling, and it’s coming out of me. What is that?’ 

Diagnosis

What were the first symptoms?

Great question, and it’s going to continue to flow with the first question you asked me: what I love to do is teach. Well, I was teaching that day, preparing the students for one of the most important tests ever in the state. 

As I was teaching them, I took a brain break with them. We’re dancing; we’re doing the wobble. Then all of a sudden, I got so heavy. My arms got heavy, and I got tired and fatigued. I had to tell the kids, “Y’all got to sit down. I don’t know what’s going on, but y’all sit down. Get out your book and read.” 

I needed to sit down for a minute, and there was a throb. There was like a skip, a beat in my chest, and it had to throb and calm down. I said, “I don’t know what that was, but it really scared me.”

I was scared, and I said, “Something’s not quite right.” Then I heard a wheezing sound that came out of my body. I said, “That’s something that I’m not controlling, and it’s coming out of me. What is that?” 

When was the first time you sought medical care for these symptoms?

Long story short, probably about a week later after that, I ended up in the ER room. The ER doctor said, “You are not going anywhere. Matter of fact, we’ve got a room ready for you, and I don’t even trust your husband to take you to the hospital. What we’re going to do is put you in an ambulance, Shyreece, and take you to another location.”

That was the beginning of my journey to being diagnosed with stage 4 lung cancer.

When did you first realize this might be cancer?

The first inkling that I knew that I was dealing with cancer was when all the tests that were run pointed to absolutely nothing that was on the surface. It wasn’t pneumonia. 

I was like, “Come on, everyone. I have to get back to work. Give me some cough syrup. Give me your cough syrup so I can get back to work.” No cough syrup ever came. 

They hooked me up to the EKG to see what was going on with my heart. Perfectly fine. Nothing was coming up. I’m like, “Okay, I’m good. I’m good.” I’m getting excited. I’m good. But then they said, “We have to go inside. We’re going to do a VATS (video-assisted thoracic) surgery on you to drain the liquid that is crushing your lung.”

Now things are getting serious. I’m like, “This sounds deep.” “We’re going to scrape some tissue, and we’re going to send it off.” That’s when I’m like, “Whoa boy, this doesn’t sound good because you’re not finding something on these preliminary tests, and yet something is still gravely wrong.” 

“Now you need biopsy tissue.” That’s when it was like, “Oh boy.” That’s when I knew that something deeper may come out of this. 

I’m like, ‘Cancer? What is cancer? Give me whatever cancer needs to be dealt with.  I’m good. Let’s go.’

The test results

The test did come back that it was a malignant cancer, including the biomarker. The FISH (fluorescence in situ hybridization) test indicated that I had an ALK-positive mutation. That was the beginning of one of the most frightening journeys. 

Being the kind of person that I was, I don’t know why that didn’t faze me like that. I was so gung ho about doing something else. I wanted to press through it. I’m like, “Cancer? What is cancer? Give me whatever cancer needs to be dealt with.  I’m good. Let’s go.”

Boy, how I wish it was that simple.

Describe getting the lung cancer diagnosis

It took 2 weeks to get an actual diagnosis. All of those tests, and this is during hospitalization. I always go back to the fact that this is a hospitalization-type of moment because my lungs were crushing. That was an indicator that something gravely, seriously was wrong, and it was more than just a cough. It was more than just heaviness. 

Then 2 weeks after hospitalization, on the last day, the hospitalist came to my bedside and said, “I’m so sorry. It’s cancer, and it’s stage 4.” 

That’s when I had the first cry. I cried on the phone with my cousin, who’s a nurse, and she was living in another state. When I posted on social media that I had to do a VATS (video-assisted thoracic surgery), she called me immediately and knew that.

She said, “Wait a minute. What’s going on?” Then I shared with her right then that they found cancer and it’s malignant. We both cried.

Guidance to other people on processing the diagnosis

The type of person that you are before cancer is important to help you endure that moment. Part of me — yes, I cried and broke down — became very vulnerable, and every conversation that I have ever known that I had with… this is where I bring in the God component. It happens in almost every traumatic moment. It’s like, “Oh, God. I thought this about my life. What is happening?”

In that moment, you want to find reasoning that is spiritual or medical. Every kind of component of philosophy comes into your mind and heart right then. Now I’m reaching for character, right? I’m reaching for moral. I’m reaching for something that can ground me through this moment as to what is being shared with me and who’s there for me. 

Who can I call? The doctors are here delivering information, but they are not the ones I want to talk to right now. Who can I call? What could I reach for? In that moment, I stayed there for a moment, but then something on the inside, that part of me is like, “Okay, fine. Fine. If this is what it is, then what’s next? What’s the solution, somebody? I’m like the lady in ‘Wiz’ now. Don’t bring me any more bad news!”

Okay, so if it’s chemo treatment, that’s what they brought to me. Chemotherapy treatment was next. I said, “I’m not waiting. Bring it to me now. Hook it up in the machine. How hard can this be? Let’s do this.” 

Now, looking in hindsight, I was like Superwoman going quickly down by the head, and I didn’t know it. Intravenous chemotherapy was hard. They loaded me up, and I was like, “Boom, took it.”

Eventually, I started getting weaker and weaker, and then I really had to reevaluate some things, even the D-word. Not diagnosis. If I’m going to die, then let me start preparing my funeral.

What was your reaction to hearing that it was lung cancer?

Just that I don’t have a history of smoking. Where did this come from? I even thought that it could have possibly come from all the smokers that ever came around me when I was growing up. I blamed them.

I said, “This is smoking-related.” But research and as I continue to grow and learn, the lung cancer and the rarity of it and the complexity of it, it’s absolutely not at all smoking-related. 

Within that, it had given me an opportunity to heal on some very mental, spiritual issues that I’ve never dealt with in my adulthood that stemmed from my childhood. I needed that to happen because I needed to know the best treatment plan for me. If it was going to work, I needed to be centered and whole. I needed to be clear. 

I need you to know me. I need you to hear what I’m saying to you from me and then going to teach about these different biomarkers.

Breaking the lung cancer stigma 

First of all, I really had some of the most challenging statements to me, and that was one: “When’d you smoke? I didn’t know you smoked.” 

That stigma alone was something to deal with. Based on my character, I tried to find the most Christian way to respond without getting really, really upset and seeing my other side.

Then again, it became a teaching moment. I said, “Great, I get a chance to teach about my type of cancer and my type of mutation. It’s not smoking related.” I start there.

Then I also let them know that I’ve never smoked. Yes, I grew up around a smoking environment, but that is not the cause of this cancer. I had to go into a teachable moment and also let them know that, no, I do not look down on anyone who smokes, but I know that that’s not my story.

For you to understand that smokers are just not the only ones who can get lung cancer, I need you to know me. I need you to hear what I’m saying to you from me and then going to teach about these different biomarkers. 

That’s one of the major approaches, that I use it as a teaching moment now. That’s what I was trying to say before. My teaching skills and degree and everything about it and my talent for it never go away. I just use it in a different form. 

I don’t know why I got this lung cancer. I reserve the right and the stance to say that. I am shocked that a non-smoker can get this. It’s not saying that I don’t love you or I’m judging someone if they did smoke. No, all I’m saying is that I want to make sense of this. Make this make sense.

Treatment Decision-Making & Self-Advocacy

Video (Part 2)
Describe the first treatment conversation with your first oncologist

I’m so glad that we get an opportunity to go there, because the first oncologist was appointed to me as one of the 5 doctors who came to my bedside while I was hospitalized initially to figure out what was going on with my lungs. Why they were crashing, and where is this fluid coming from? 

1,700 mL units had to be drained from my right lung. They left half of the liquid in there, reserved for the VATS (video-assisted thoracic) surgery, and they got some more of it out that way.

There was the oncologist that was represented. I had the surgeon. I had the oncologist that was appointed nearby, a local one that came in. I had the hospitalist and a couple of others, maybe a cardio doctor that came in, so that now we can rule out some things. 

The lucky one that stayed was the oncologist and the hospitalist. The oncologist there was sharing with me because now we’re asking her about prognosis. This is critical. You’re at my bedside, and you’re sharing some things with me. 

First, it was like, you know, you’re talking that way. In another breath, you’re like, “Oh, you’ve got about 15 months to live.” 

I’m like, “Whoa, that changes the whole gamut of things. Well, what can we do about this?” She said, “I can start you on…” They call it the “salad mix.” I’m not going to even try to pronounce all the medical names that go with that (carboplatin, pemetrexed, bevacizumab).

Then I knew deep down. I said, ‘I think I need to go somewhere else.’

When you decided to get a second opinion?

Most folks in the community of survivorship or cancer patients, you know that there is a mixture of intravenous chemotherapy to try to stop and reverse the cancer in its place. I did that for about 3 cycles, 3 weeks with this local oncologist who knew absolutely nothing about the different biomarkers and how to treat these different mutations.

I know that for a fact because the different treatment plans she had me on were killing my cells. I was dying quicker, it seemed like. It was like, “Wow, this doesn’t look like it works, and I have to stand up for myself.” 

Plus, it was like a treatment that she was giving that — I’ll just say it because it’s my story — was the same treatment that she would give a smoker. There, I said it. Same treatment, stand in line.

Matter of fact, when I went there, there were people literally lighting up cigarettes waiting outside somewhere to get their treatment, and there were signs in the bathroom that said, “No smoking allowed.” I’m like, “Wow.”

Then here it’s like, “Okay, stand up. Your turn. Stand in line. Roll up your arm. Or do you have a port? Do you have a port? Okay, well, use your port. Put this in there.”

It was like, “Whoa, wait a minute. Wait a minute. Wait, stop, stop. Wait, can you tell me? Can you pinpoint to me where exactly is my cancer?”

I’m not going to say that doctor’s name because I don’t have her in the best light. I brought her a coloring sheet. I used one of her brochures in her clinic, and I took and drew the lung shape. I said, “Can you tell me which one of my cancers is in your brochure? What does mine look like?” She really, really didn’t have the best answer for me.

When I did that, here’s the big insult. She said to me, “Shyreece. You have monkeys in your head, and they’re speaking to you. You need to just stop listening to them and accept your diagnosis.”

Then I knew deep down. I said, “I think I need to go somewhere else.” I followed that hunch. I went to University of Michigan, where I learned that there are different mutations and that I have options.

I did not need to do right away the intense, hard, chemically-altering cell intravenous chemotherapy treatment that they had me on immediately. That came to a stop immediately.

Guidance to others on patient self-advocacy

Stephanie Chuang (The Patient Story): Even as an advocate, I feel like there are moments when you don’t want to be the “bad patient,” and you want to say, “Well, you know what? The doctor knows everything. They know what’s best. They’ve got all the medical training, so I should just listen.” And it’s hard. Can you help give people guidance here? What can motivate them to say, “No, I need to speak up for myself. I can and should speak up for myself”?

Here’s the teacher-type skill in me coming back out again. There’s a concept called Kagan strategies. It allows people to come together and interact in a way that you can move and get a goal done, accomplished, completed.

You help folks get together and have a camaraderie of spirit so that the end goal would be the best practice for that patient, project, individual, whatever we’re going for. 

When it comes to me, I know how to collaborate and get whoever is on my care team. That’s the homework that I have to do. It’s like, “Okay, this doctor specializes in this. This one is needed for side effects. This one is the neurosurgeon.”

I need to see how they all are [and] why they are on this team. First of all, that’s homework. Why are you on this team, Team Shyreece, Patient Shyreece?

When I know that and something that’s going on with me, I can say, “This may fall in these 2 categories, so let me get these 2 in a conversation.” I do it through my patient portal, or I’ll write down questions so that I can take it to my appointment and compare notes.

At the end of the day, the patient has to decide exactly which way you’re going to go to what’s been presented to you. If you are presented with options, I have to look at the data that I’ve been collecting and the anecdotes. Sorry if I’m using too many teacher-type behind-the-scene concepts, but that’s what I use now in order to make data-driven decisions.

Biomarker Testing & Working with Specialists

How did you get the second opinion?

Stephanie Chuang (The Patient Story): It’s an important message for people. Going back to this biomarker testing, I want to really dive into this because it had not been brought up at all in your first conversation, right? It was, “Skip to this harsh chemo, and that’s that.” You go to a second opinion. You get a second opinion. What did the doctor say there?

We’ll go back a little bit [to] while I was being hospitalized. Then, unbeknownst to my knowledge, the biomarker testing and all that had already been done. They took my specimen from the VATS (video-assisted thoracic) surgery and sent it because it’s a local hospital in a rural area.

They took my specimen, shipped it off, and sent it off to the nearest university, which was about 2.5 hours away. When they received it, they ran all the tests on it and sent the report back to the hospitalist.

The hospitalist knew to do that in the first place because he was from the University of Michigan. University of Michigan were the ones who’d done the biomarker testing. The hospitalist called in the local oncologist and said, “Okay, this is a cancer patient. Ball’s in your court.” 

That local hospital did not have access to the [report], or I don’t even know if they knew how to read all of the report. All they knew was [for] lung cancer, you stand in this line. Lung cancer goes to this line, when there’s 15 or 16 different aspects.

I’m speaking more intelligently now because I’m speaking in hindsight. But then, it’s like, “Oh, I don’t know.” I said, “Let me just go to University of Michigan and find out.” Yes, I had some options. 

Biomarker tests may lead to new treatment options

One of the options was through a targeted chemotherapy. The local oncologist knew nothing about it. The local doctors that I had knew nothing about it. It wasn’t even in their database.

That’s a whole horse of a different color. If I had enough time to spend the rest of my life advocating a thing, that would be why doesn’t the local, rural — that’s where most folks who are living just above poverty. I was a teacher with teacher salary; we have to go to those kind of doctors and clinics. It’s in our area. Why are they not knowledgeable of the different biomarkers? 

Working with a lung cancer specialist

Stephanie Chuang (The Patient Story): It’s incredible because it shifted your entire trajectory. It’s an important point for me, too, is understanding and why we do this at The Patient Story. We are trying to reach people who don’t have access to the big research academic centers, who already have people who work both in clinic and in research, know about all these things, and know all the latest developments. This information does need to get out to the millions of people in this country who go to rural, community cancer care centers.

I also do understand that there are a lot of general oncologists. They do their best, and they’re trying to keep up. What I will say is that’s why there are these partnerships, right? You can go to your local oncologist. But if you know to say, “Hey, I’d like for you to work with so-and-so who’s at University of Michigan or UCSF or Mayo Clinic,” wherever, you can have that partnership.  I think an important point here, too, is the right doctor is okay with that, right? There’s no ego there. There’s yes, I have my strengths, and I need you as a specialist.

Work together as a team. I don’t know why we’re territorial. I don’t know. Where does that come from? Because it doesn’t help a patient like me. It doesn’t help us.

We need you to collaborate and work together. I need the site, the palliative care doctors, the PCPs, whatever you want to call. You have a meeting every once in a while. 

In the education world, there are diagnoses that can help in a student’s life, but it doesn’t keep them there. We’re just saying that today you’re wrestling with ADHD. Today, you may need a 504 plan to help you with your behavioral needs.

Guess what? We have to have meetings. We bring in all the professionals, we bring in the teachers, we bring in their doctors, and we bring in their parents. Everybody sits around the table to develop that plan.

My goodness. To me, it’s just simple. How about my doc? I’ll just keep it personal because we’re talking about the patient’s story. Here’s Shyreece’s dream, and it might happen after I’m called home to glory. But I would sure love to see the day where the oncologist, the neurologist, the neurosurgeon, the radiologist, and everybody just have a meeting every once in a while. Maybe every year, once a year, or every 6 months.

I know you are busy. We thank you for all that you do, but please consider coming together just to have a patient review with everyone that’s involved. That’d be great. Thank you for your time.

How did treatment options change after the ALK-positive result?

Stephanie Chuang (The Patient Story): With the biomarker testing, it turns out that you were ALK positive. For people who are not familiar with biomarker testing, it’s also known as genomic testing or mutation testing. You’re trying to figure out if there is a driver mutation that’s targetable. That’s what you were saying about targeted therapy, right? ALK positive for you. That was the targetable mutation. 

[My oncologist] just said, “Here are some options. I said, “I’ll take door number 3.” When I picked it, which is the targeted chemotherapy, he said, “I have to run this by your insurance.” I’m like, “Oh, insurance, what?” Now, there’s another topic. 

They ran it by the insurance, went through that process, and waited for hours just to see if I can go and get the targeted therapy.

I’m so glad that University of Michigan had their pharmacy right there. We’re just talking about special deliveries because I’m thinking, “You can’t just send this prescription to Walgreens so I can go pick it up?” No, honey. We’re going to have to see if the insurance approves it, and if they don’t approve it, that would be a shot to me.

What if they didn’t approve it? I’m glad they did. But what if they didn’t approve it? It’s like, for me, now what? That door number 3 is not available to me. That’s a whole ‘nother conversation.

Let’s stick to [the fact] that it was approved. I had to wait and go get it and then for them to fill it. It’s through their pharmacy only. I would have never been able to get it anywhere else anyway. That’s why nobody else knew about it.

Targeted Therapy & Clinical Trial Experience

Video (Part 3)
The targeted therapy experience

I started taking [targeted therapy] in April. One month after diagnosis, I start a whole new world, and I can cry. The day was sunny. I’m sitting in the car with my husband. We leave University of Michigan to take this new elixir of knowledge in this bottle in the form of pills. I can’t even remember how many a day I had to take with crizotinib, the first one, and so I started taking them.

We had our lunch, and then not too much time went by until I felt different. I did feel the side effects of it a little bit, but some things started kind of clearing up a little bit in my throat area, where I was always challenged after surgery.

I started being a little bit more tolerable to what was going on with my body. I felt different. I said, “Wait a minute, something’s different.” I lived 3.5 years on it.

I maintained side effects, but I also knew when it stopped working. That’s a scary place to be also. That’s when I knew I woke up to another reality is that I can’t put all my hope into these targeted treatments. So now what? 

Experience in a clinical trial

Stephanie Chuang (The Patient Story): I think it’s good for patients and caregivers to have those expectations set. I also love that you’re talking about the need for constant research. This is why clinical trials are so important, because you’ve got these, like crizotinib, that were approved, and you just need them to be approved in time for you. 

But then at some point, you know that there’s resistance and the cancer sometimes finds a way around it. So what’s the next thing? That’s why these clinical trials are constantly being done. Do you have a message about that, the importance of clinical trials and that research, what it means to you?

I am all in for clinical trials and research. I participated in a clinical trial during a May 2015 through to July 2015. I remember like it was yesterday because that’s when I made the decision to come out into retirement.

I could not do the clinical trial at that time. It was very intense. It was like three times a week driving the University of Michigan, which was two and a half hours. Then there were complications, and understanding was this clinical trial that I was participating in. Would there be any help to me in regards to gas and transportation? That got confusing with the university and so we worked through that.

I wanted the world to see this process of this new strange lung cancer that’s rare. No one’s ever really heard of it before.

There’s a resolve that in this journey, it will require three components of you. Mind, body and spirit. You cannot afford to ignore any one of those components.

Importance of more diverse representation in clinical trials

Look at me, I don’t know if you noticed, but I’m Black. I was trying to figure out is there anybody else that looked like me that has this? 

Yes, I am all for clinical trials, and that’s another thing. I just like being transparent and I like being authentic and real. There are not a lot of African-Americans who participate in trials in the first place, but I did. I went on ahead and did it.

I didn’t like how it was working with my body. And so by July 2015, the physician assistant, I just love her to death, at University of Michigan. She looked at me in my eyes and she said, Shyreece, this is not the quality of life we want for you, and you don’t have to do this. So because I was having a bad time with it, so she pulled me off of that.

I participate in trials and I do support research where I can.

Stephanie Chuang (The Patient Story):  I think there are a couple of points there. One is clinical trials are, someone put it as tomorrow’s treatment today. Sometimes it can give you access to something that’s not yet on the market. And the other part is helping people for research.

What is your message overall to the patient, to the caregiver right now who’s watching this, who’s a little bit nervous, who knows, logically speaking, or rationally, I should speak up, but it’s a little bit hard to do in the moment.

You have to have a resolve. There’s a resolve that in this journey, it will require three components of you. Mind, body and spirit. You cannot afford to ignore any one of those components. They all have the same level of importance to your overall well-being, as well as how effective the treatment is going to work.

Everybody is different. That’s correct. But one thing remains a fact, and I wish that there was enough time to do scientific research on the survey that most cancer patients must complete prior to their return visit with their doctor.

The survey asks how are any one of these everyday circumstances under these categories, family, spiritual, financial, affecting you this week on the scale of one to 10?

And if your spiritual balance and inward being balance is off, that will affect the success of the treatment being prescribed to you. So keep that in mind on your journey – mind, body and soul. All three of those components are equally important as you journey in your cancer walk.

Shared treatment decision making between doctor and patient

Stephanie Chuang (The Patient Story):  When you think about the patient doctor relationship and the paradigm we’ve been living in, where it’s shifting, but it’s still slow, from doctor knows best, I will sit here and listen versus I need to be in charge of my own cancer care or my healthcare in general. What is that message to doctors, to patients about the need for more patient self advocacy, for more listening to patients?

First of all, I would like to take this opportunity as we’re winding up that section to thank the collaboration of all of the doctors, especially the ones that I’ve had at University of Michigan, as well as Stanford Health Care. I think that they are a phenomenal team. 

The minute that I walked into Stanford Health Care, they knew my back story. There’s a word on the street, back story, what’s your back story? Then they’ll say, well, I’m just living my back story right now. Well, Stanford, they knew my back story. I was shocked about that and they looked at it intently. They had a plan of where they would like to go. 

It was easy for me to trust in that. So there were some components that I was looking for in their approach. They say the first impression, it’s important. So they had a great first impression, which was, ‘Let us take a little time. We don’t need you to fill out the paperwork of a new patient today, Shyreece, just to know you. No, we went and did a little background work on you.’ So to know the patient is very important to me. 

Own your data.

If somebody is going to take the time to know you, then yes, that’s a good starting place to where we can enter into a healthy collaborative. Now I have to say collaborate still, because this is my temple. This is my temple. I am not a guinea pig. I’m not a lab rat. This is my temple and nobody walks in this temple but me.

So, yes, there are some parts of me that I have to bring to the table because I can’t expect them to know everything there is to know unless I tell them. There are some things that I have to share as well. So it’s going to take that collaboration.

Also, when you’re presented with options, that’s all they’re doing, is presenting you with options. At the end of the day, you have to make a decision.

So my advice is, look folks, study your own data when you’re presented with some options. The doctors may not know everything before your cancer diagnosis. They’re not gods. They’re your doctor, so have a participative approach to your care.

Own your data.

Diversity and Inclusion in Cancer Care

Video (Part 4)
Amplifying diversity in healthcare and research 

Stephanie Chuang (The Patient Story): We know that Black men and women with lung cancer are significantly less likely to get diagnosed in an early stage compared to their white peers. If you’re getting diagnosed later, the odds of survival are smaller, right? But there is a lot of human impact here that I want to unpack. What is your message in terms of what we all need to do better? Whether it’s clinical trial participation, whether it’s messaging to the Black community, what do we need to be doing?

It’s definitely not in the rural areas yet, it’s coming, but there are some African-American initiatives community movements where on the health front, they’re really going into communities and neighborhoods.

They’re setting up fairs and booths and handing out literature to where you can really be active in your health on all fronts, whether it’s lung cancer or breast cancer awareness, all of it.

Reaching faith-based communities

I do know that it’s not enough, though. It’s not. So much more to be done, but it’s a start. Within those communities, and I’m just going to be brutally real, it might have to creep into our faith-based communities because even I have to continue to combat this as a believer.

I do attend church, but I’ve also learned how to grow in this challenge of having cancer. I have the opportunity to see both sides as a cancer patient and as a participant in church activities. So the disconnect is that, and this has happened to me a lot. ‘Girl, just give it to God. Just pray.’

As if the God that I’m praying to is not going to answer through people. When that realization hit me, I was like, oh, He’s going to answer through people when He does, so people, how can we get ourselves in a position to actually do some really wonderful things? 

I think that that aha moment is going to come from let’s get out of being territorial first. We do have some owners of the information, ‘this is our information and it’s going to stay in our university.’

There’s that extreme, to just providing the information through flyers. You go to a church gathering and present, I don’t know, have a day of food and medicine. I don’t know. We can be creative, right? I hope.

If you give a man a fish, he’ll eat for the day. You teach a man to fish, he’ll eat tomorrow. But how about we show them where to fish?

Improving outreach to Black communities

Stephanie Chuang (The Patient Story):  We’re painting with broad strokes. Black people or African-American communities are not one monolithic thing, but generally speaking, there is a sense of distrust with some folks when it comes to institutions, to healthcare, to testing.

And of course, Tuskegee the experiment is a huge part of this because people from that era are telling their family members and passing that down, okay, you’ve got to watch yourself because we have to protect ourselves. 

There are these cultural nuances.  So you suggested let’s meet people where they are in the community. Is there anything else that we can do better so that we have more participation?

Oh, absolutely. First and foremost, with all due respect, the first thing outside of race, color, creed – I had to choose if I wanted to live or not. When I decided that I want to live, I started looking at everything through the lens of, okay, so what is the best approach? What is this? 

Let’s go back and let’s connect something real quick. The first oncologist who said, ‘You have monkeys in your head,’ I could have decided right then to take that as a total racial write off and just go all into some kind of march or whatever and raise a flag. But I chose not to because that energy would have taken away from the energy that I needed to live.

Because when you talk about monkeys and apes and stuff like that, oh, that can raise an alarm in the Black community in a minute. But for me, I needed to look at the bigger picture. I didn’t need to address her that way. Not at that moment. 

I need to live first. Let me find out how to live first. So now I’m reaching for the exchange. Can we get to a place where we can feel comfortable engaging in a conversation? 

We talked about the stigma of lung cancer being associated with smoking, then we need to remove the stigma that the reason why people are not getting diagnosed early or vice versa, is it all race related or is it because they really don’t know where to fish? 

If you give a man a fish, he’ll eat for the day. You teach a man to fish, he’ll eat tomorrow. But how about we show them where to fish? Where is the information at? I wanted to know, so I sought. I now teach people, not color first, gender first, and all this, but I teach you where to go to find information. Is that where the energy goes now? 

Democratizing access to treatment information – for everyone

That way, I can demystify the Tuskegee approach. I’m sorry that happened, it did. You’re right, but that’s not today. That’s not today. So I’ve got to stay present.

So what’s today? Today’s issue is just like we talked about once before, which is the information is not made available to everyone. And University of Michigan had knowledge about a targeted therapy that the local rural area that I lived in had no idea about. 

I don’t think all the way that that had anything to do with race, color, or creed, it had to do with the dissemination of pertinent information for just people who are not who are not in the university.

You can never give up hope.

Not now, not then, not ever.

Final message to others

I’ll start with the end and work backwards, which is hope. The hope is in knowing that there’s more to life than just your existence. The hope for me was I joined a lot of groups. I joined a lot of advocacy groups and the hope was always in just the research alone. We don’t know what’s coming out. So there’s that hope in the unknown. 

You can have fear or you can have hope. Then when you have hope, what is it in? No different than fear. What is your fear in? I can have fear of my scans. I have a scan coming up the end of April. Now I can have fear of the scans, or I can have hope that when the scans come out, that there is an answer, that there is a remedy. That there is something on the horizon.

When I had that hope at first, that hope didn’t kick in right away, it’s weird, even when I called myself a believer, but in a cancer diagnosis, you’re staring at something that people have died from. That’s a whole different walk because you’re planning your own funeral. 

But yet a glimpse of hope came, to know that the crizotinib that I was on didn’t even exist 10 years ago. I did pray and people were praying for me and I know that on a cancer journey, the people that love you, they go into prayer. Well the prayer is that, the hope is that yes, research is changing, and it’s creating opportunities to live longer.

I’ve been living eight years now. You can never give up hope. Not now, not then, not ever. So I get the hope to live longer, but I can’t just hope in the next pill. I need to have a place of peace. I need to have a disposition that even if the next pill doesn’t work for me, can I live a life of giving back because that gives me joy. 

I want the next person who’s diagnosed to know that not only can you have hope in the research, but you can have hope in a very divine essence of love. Love is an energy that I know that after the last pill doesn’t work for me, the quality of life that I was able to live because of the cancer research, it’s great. And I’m thankful. 

So resolve. Get your place to a resolve where you can enjoy the research and take advantage of it for the quality of life and give back. Give back to your family. Give back to your community. Give back to something.

More on Shyreece’s book

HOPE: It Will Not End with My Death is on Amazon.com. It’s basically my six-year lung cancer journey. The first six years in all of the ebbs and flow of it. 

It’s not just about the hospital, so it’s not a boring read to where it’s like she’s in the hospital today and then you’ve got to go get a test. It’s not like that. Anyone, even if you don’t have cancer, can read it and just follow me on this awesome journey.  I do call it awesome because there are so many other discoveries of me becoming. 



Thank you so much to Pfizer for its support of our patient program!
Categories
Lung Cancer The White Ribbon Project

The White Ribbon Project | Rhonda and Jeff Meckstroth

The White Ribbon Project Stories

Rhonda & Jeff Meckstroth
The Love Story

Story 5 of The White Ribbon Project Stories

This love story started at a fire station in rural Ohio. It’s where Jeff and Rhonda Meckstroth both worked in 1990.

“Instantly I was like, oh my gosh, he is the most handsome thing I’ve ever seen in my life,” says Rhonda about her now long-time life partner and husband. “He’s six foot two. He is 200 pounds. He’s built like a wall and these big, huge muscles that are bulging outside of his firefighter uniform. So I’m just like standing there, like stuttering, I’m here for an interview!”

She got the job and they became colleagues and friends. They didn’t actually start dating for five years. When they did, they kept it a secret.

“I definitely didn’t want anyone to know because I thought I could possibly lose my job and I had a great job and a great income.”

Their relationship started off with a bang – literally – when Jeff invited Rhonda onto his 2-seater plane for their second date. The plane malfunctioned. Jeff had to crash land the thing.

“And we land, and it just so happened that my door popped open when we hit the ground, so I’m literally now hanging on by the seatbelt that Jeff just tightened. We come to a stop. He asked me, ‘Are you hurt?'” Rhonda recalls.

“Neither one of us are hurt. He undoes my seatbelt and it tells me that he smells gas, going to take off running. And we’re both running, going up towards this little older couple that own the farmhouse. And there’s all these sirens. They were the ones that heard and called 9-1-1. And so needless to say, we were on the news that night.”

Jeff adds, “When we ended up on the front page of the paper, the cat was out of the bag.”

Thankfully, they were safe. The crash actually made Rhonda fall harder for Jeff. Despite the disaster, she says he never lost control of his emotions.

“That to me is like the perfect image of exactly how I see Jeff. He’s my caretaker, he’s my provider. He’s my safety, my security, my stability.”

Jeff – the caregiver, firefighter, family man, and farmer. Harvest season became doubly special for this farmer because it’s also when their romance began to grow.

“I would always, every harvest say, you know, we’ve made another harvest together,” says Rhonda.

But in 2015, harvest would become a different kind of season for these two.Jeff had a lingering cough that persisted for several months.  A few biopsies and scans later, the results came back:

Stage 4 lung cancer. 

“We would just lay in bed and just cry and just get as close as we could and just hold on to each other. And like At that time, they told us, Jeff really only had months to live,” Rhonda recalls through tears. “I remember specifically thinking to myself, like. you’ve finally given me that love story. And now it’s going to be taken from me. It literally – it crushed me… To see him cry, it was heartbreaking. I still remember those days like they were yesterday.”

The lung cancer diagnosis led to a role reversal. Jeff, always the caregiver, was now the one who needed more support. Rhonda launched herself into fighting for his life, especially when the cancer spread to his brain.

It wasn’t easy – she found herself going up against the medical team’s recommendation of whole brain radiation.

“I said, no, all we need to do is switch to this therapy that’s been developed that now crosses the blood brain barrier. And they literally told me, you’re making a decision that’s going to kill your husband.” 

Rhonda sought out specialists. She switched both the medical team and therapies. She says within a few months, the cancer that had spread to his brain was gone.

Rhonda’s search for kindred spirits in advocacy led her to The White Ribbon Project, a grassroots movement to elevate lung cancer awareness.

The group started small, but now supporters span the entire country and even the world. Their greatest message is that anyone with lungs can get lung cancer, and it’s about time everyone unified under an umbrella of love and understanding to drive more awareness and research for lung cancer.

Rhonda’s own advocacy helped to save Jeff’s life. 

She wanted to do the same for others, including changing other people’s perception of life with lung cancer, especially stage 4.

“The only thing they know about stage 4 cancer is death. They don’t know about these new, new advances that’s been happening.”

Jeff remembers getting hit with the dire prognosis. “The first doctor only gave me like six months, and I’ve been around a lot longer than that now.”

That’s thanks in part to the biomarker testing he had to undergo before treatment.  Doctors took extra tissue samples to test for genetic (driver) mutations.

Jeff ended up testing positive for the ALK+ mutation, opening up more treatment options. In fact, they say biomarker testing helped Jeff several times.

“It’s helped us on three different occasions not only with diagnosis, but on each time that he had progression of his cancer, the liquid biopsy was able to say, here’s the mutation, here’s the new mutation, and here’s the direction the clear plot path that you need to take for survival,” Rhonda explains.

And that direction has led to more time together. It’s time Rhonda says she never takes for granted. She wants the same for others.

“We’ll save a lot more lives and a lot more families will have the opportunity to make the memories that Jeff and our family have been able to do with being able to have six more years and counting, you know, six more anniversaries, six more vacations, six more birthdays.”

Six harvests after his stage 4 lung cancer diagnosis, Jeff is getting ready to finally retire. Both he and Rhonda are looking forward to the change, spending more time with one another.

They’re also hopeful they can and lift others around them through their voices, and show what is possible, through their love story.

“The most important thing is that people know that after diagnosis that there is hope,” says Jeff.

For Rhonda, this has been a journey of love for Jeff, but also one of growing love for herself.

“I need to be strong. I need to find my voice, my strength, my confidence to be able to carry on, and so I’m trying to learn from this process how I can be a better person and how I can help others. That’s what keeps me going.

Rhonda Meckstroth

→Back to The White Ribbon Project Stories


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More non-small cell lung cancer (NSCLC) 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)

Categories
Caregivers lung Lung Cancer The White Ribbon Project

The White Ribbon Project Stories | Chris Draft

The White Ribbon Project Stories

Chris Draft:
The Team Player

Story 3 of The White Ribbon Project Stories

Chris Draft left if all out on the field when he was playing for the NFL.

“I’ve had asthma attacks. I was in the hospital about six, seven times while I was playing in the league.”

Different teams, same mantra: Don’t take anything or anyone for granted, not while he played, but especially off the field.

He cherished every moment with the love of his life, Keasha Rutledge.

“Intelligent, strong, fierce woman, that just lit up a room when she walked into it,” describes Chris. “She actually graduated a year early from high school, attended Clemson University, graduated with a degree in electrical engineering.”

Keasha was passionate about her education, dance, and also about her health. While training for a 10k race, Chris says Keasha started to feel shortness of breath.

Keasha would get antibiotics and then undergo a chest X-ray before the couple was devastated by the news.

“That was lung cancer. Went to a biopsy right out two days after Christmas,” Chris says. “We found out the most important fact about lung cancer at that moment, and that is… anyone with lungs can get lung cancer now.”

Chris admits he wouldn’t have believed someone with no smoking history and so young could get lung cancer.

“37 years old and amazing shape. Never smoked. If she is not right in front of me and somebody told me that I would probably be like, ‘Oh, that’s kind of crazy. What are you saying to me?’ Because all of the messaging historically was just about the connection with smoking.”

11 months later, Chris and Keasha got married. Instead of gifts, they asked people to support their vision of building awareness that anyone with lungs can get lung cancer.

“She came to me and she said, ‘What if we don’t get presents? What if we ask our family and friends just to donate to the foundation?’ And literally, that’s the point where we started our Team Draft initiative that is changing the face of lung cancer,” Chris says.

So our wedding day was two commitments, you know, one to the lung cancer community and the other one to each other.

One month later, Keasha passed away. From that time on, Chris has dedicated his time and energy to the mission of spreading a message he believes can help save countless lives.

Anyone with lungs can get lung cancer.

And it has been a huge goal in lung cancer, which is the deadliest cancer in the U.S., killing the most men and women in the country each year, according to the Centers for Disease Control.

A decade later, Chris reflects on his tireless lung cancer advocacy.  For him, the definition of winning is crystal clear in this space:

Shifting away the focus from the narrative of the smoking stigma in lung cancer to growing more advocacy and love within the lung cancer community, itself.

“The honesty to just acknowledge that getting people to stop smoking was not anything done out of malice to create some type of stigma. But it was about actually loving people enough to say, we need to get them to stop smoking.”

Beyond that, Chris hopes to refocus lung cancer awareness away from the sole focus of smoking histories to survivorship, and most importantly, to lead all of these efforts with love.

“It starts with caring about the people because if we want to educate, then the lung cancer community has to be bigger than just the people that have lung cancer so that someone can know that anyone can get it before they actually get it right, so that they can support research before it actually happens to them,” he says. 

I’m saying all that matters is if we love our people, then the answers will be simple. Stop trying to complicate it, and that’s where The White Ribbon Project starts.

Heidi and Pierre Onda

The White Ribbon Project is a grassroots campaign started by Heidi Nafman-Onda, a lung cancer patient advocate, and her husband, Pierre Onda, a former primary care physician.

They, along with so many others, felt a lack of support and an unwillingness to represent their lung cancer stories, so they began to build actual wooden white ribbons and sending them to anyone impacted by lung cancer to understand: 

This ribbon is for you. For all of us.

“We’re going to walk with you. We’re going to make sure we get people around you to keep supporting you because we know that cancer is not just a physical thing, but it’s a mental and emotional thing,” Chris shares.

“That’s why even with these ribbons, as we’re giving them out all over the country, we’re challenging people to tell their particular story about what’s going on so they can help somebody that’s in a similar situation. It’s not just to tell your story, just to tell it, but to relate to people so that they can see themselves within that disease.”

When Chris looks at this work, he’s driven by a greater purpose. It starts with the lung cancer community but embraces so much more, including partnerships across other health communities who are also fighting for the same thing: A better future.

“We are touching more than just the lung cancer community to make sure that there’s access for early detection, for screening. Research is going to biomarker testing that’s going towards targeted therapy. That’s the future of cancer care. That’s not just about lung cancer. So as we make it more people more aware of biomarker testing that goes across all cancers, that’s an education that is critical research.”

This former pro football player says his new team, The White Ribbon Project, has had an amazing season this last year. With more ribbon builds and support all across the country and the world.

This former pro football player says his new team, The White Ribbon Project, has had an amazing season this last year. With more ribbon builds and support all across the country and the world.

But it’s a new season, and there’s a lot more work ahead.

“So what does success look like? It looks like all of the cancer centers realizing that everyone who walks in there, it matters. We want them to all get ribbons. But really, the ribbon is just a reflection of saying that you matter.

“We recognize the trauma of this diagnosis. We’re going to stand with you. We recognize that you probably don’t know anything about cancer. So we’re going to help you work through all these words and all this trauma of just being overwhelmed by a diagnosis.”

Keasha may not be here, but her fight and what she stood for is very much alive. That love for others has lived on through Chris for these past 10 years.

And now, also through The White Ribbon Project.

This ribbon says you are not alone and you’ve got people fighting for you. We are out here together. We’re on the same team.

→Back to The White Ribbon Project Stories


Inspired by Chris's story?

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More non-small cell lung cancer (NSCLC) 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)

Categories
EGFR Lung Cancer Non-Small Cell Lung Cancer Tagrisso (osimertinib)

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley was leading a career in her local community college, enjoying being around students, when she was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

In this video series, she shares how getting her kind of lung cancer was like hitting the jackpot in the lung cancer lottery, taking a daily pill instead of infusion chemo, and diving into how her journey changed her perspective and outlook.

Explore her incredible 3-part story series below. Thank you so much for sharing, Ashley!

Ashley timeline
  • Name: Ashley R.
  • Diagnosis (DX)
    • Non-small cell lung cancer
    • EGFR+
    • T790M
    • Stage 4
  • Age at DX: 36 years old
  • Symptoms:
    • Tiny nodules on both lungs
  • Tests for DX:
    • CT scan
    • Tissue removal sent to Mayo Clinic for genomic testing
  • Treatment
    • Tagrisso (osimertinib), 80 mg/day

Ashley describes how seeing her OB-GYN for a cyst turned into news that would change her life: She was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

Ashley takes us through the endless tests, treatment decisions, and how she is actually navigating her new take-a-daily-pill life. Ashley shares her treatment regimen, side effects, and some of the things she’s doing to feel better.

I thought, “There’s hope, and I can keep going. I’m not going to be taken out of here tomorrow. This is not a death sentence. I know what is possible. I know what the end result could be.” 


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


Ashley’s Lung Cancer Diagnosis

Ashley’s life outside cancer

I’m from Mississippi. I am an Air Force wife.

I am a mom to a spoiled little dachshund. I was in higher education in my career for many years. I was a registrar at my local community college and also worked in the registrar’s office at the University of Alabama. I enjoy students and all of that. I miss them sometimes. I love musical theater. I’ve spent a little bit of time on the stage putting up my heels, though, because I can’t remember lines anymore. 

First encounter with the doctor

A doctor admitted me right away due to the severity of the infection. He said, “First, I want you to go to the imaging center so that we can know exactly where the infection is.”

It’s just typical of an abdominal CT to go up to the lower portion of your lungs, and that’s where nodules were noted. They thought, “Well, it’s not uncommon to have nodules show up in the lungs when there’s an infection in the body.” He said, “We’re not going to worry about that, but we are going to be solution-minded and figure out exactly why.”

Then 2 weeks later, we looked again, and they were still there when I went back for a follow-up. Nothing in the hospital mentioned the lung situation at that time. We only dealt with the issue that I was dealing with right then and there, but the doctor didn’t forget it.

He could have said, “It’s from the infection, and we’re not going to worry about it,” and sent me away. Then I’m a ticking time bomb. But he was solution-minded, kept a watch on it, and then forwarded me to a pulmonary specialist to look into this. It was very rare, so he felt it needed attention.

Initial diagnostic procedures

The pulmonologist initially did a breathing test. If you know anything about how it’s rated, I was at 94%. I was breathing fine. If you’ve never had one, it’s so hard to do all of that in and out.

I made it to the bronchoscope. I was under anesthesia, kind of in a Twilight Zone kind of thing. They did put me to sleep, but it wasn’t full-blown. I didn’t know what was going on, but I woke up pretty quick, too.

He did his own scans, of course, but it didn’t tell them anything. It was not conclusive, so we went to a needle biopsy. He obviously went in through my back to the biggest nodule that I had. I had over 100 spread across both lungs, 1 millimeter or less. There was one that was like 3 mm.

He went in to grab some tissue from that nodule that was a little larger than the rest. That, too, was inconclusive. By this time, I thought, “What is wrong with me?”

He asked me, “Did you do you work in the soil? Do you garden? Do you plant flowers? Do you work in a plant of any kind?” Those answers were no.

He showed me the scan. It looked like the most starry night you’ve ever seen in my lungs.

Those are all little tiny tumors. He said normally doctors would watch this for 4 months and see if anything has grown. If everything’s the same, then these are benign, and we’re just going to watch them. But he said this is very rare.

Observing my symptoms

I was 36 at the time. I’m 40 today. This is way rare for somebody that doesn’t work in the soil, doesn’t work in any sort of plant, doesn’t work around chemicals, and never smoked. He too was very solution-minded in trying to figure out what in the world it was.

I thought I have some sort of fungus in my lungs because he mentioned that. I thought I’m going to get an inhaler, we’re going to blow this junk out, and I’m going to roll out.

I wasn’t coughing. I was tired, but who isn’t tired? I work 40-50 hours a week. I wasn’t losing weight. I had occasional allergies, but I’m in Mississippi, and we have all sorts of stuff. I get a sinus infection every year but nothing abnormal at all.

Nothing had changed. This didn’t tell us anything. That’s when I was sent to a thoracic surgeon.

Even though sometimes you don’t want to know, but at this point, I wanted to know. My patience was on edge. I need to know now.

More diagnostic procedures

The thoracic surgeon wasn’t there to be my friend at all. He was all about business, cut and dry. That made me a little uncomfortable, but he was so knowledgeable. He was the very best I could have gotten in the entire state.

He comes in. He plopped down and said, “Here’s what we’re going to do. We’re going to collapse your lungs, put a tube down, go in, take out 2 or 3 sections of your lungs, and we’re going to send it off to Mayo to evaluate it.”

They didn’t know what it was, so they ended up going to Mayo. I was just staring at them.

I said, “Hold on, back up. You’re going to do what? Do we really have to do this?” He said, “No, it’s up to you. We don’t have to do anything. But if you want answers, this is what we need to do.”

We did it the following week. I went into the operating room, and that was the first time I had ever had anything major done surgery-wise. That was the first time I had experienced real anesthesia. I had a lot to take in. I had to sign papers saying that if they put the tube in and it did something else to something else in my body, they weren’t responsible.

It was possible that there could be an issue with my lung, and they would have to go back in if air got in there. I’m like, “Okay, I can do this. They’re the experts, not me. I won’t know it, whatever it is.”

Upon waking up, I was in a lot of pain. I felt like there were knives stabbing me in the chest. After a few hours with a morphine pump, I was okay. He removed the line and removed the tube, and I was okay.

They gave me a little bit more anesthesia than normal. I don’t know if I was being difficult or what, but it took me a little longer to wake up than most. The whole process was maybe around an hour from prep to recovery. I don’t recall exactly, but it wasn’t very long. That seems like a daunting process. They’re the expert, yet that was their first time.

Waiting for the results

By the time I left the hospital that next day, he did not know yet. He said he’d never seen anything like it. It was like ground-glass-looking nodules. That’s when the pathology went to the Mayo Clinic in Arizona to make the final conclusion. 

Even then, I still didn’t have answers. It wasn’t until about a week later when that pathology was returned to him from the Mayo Clinic.

They tricked me at the doctor’s office, because he said the nurse called and said he was going on vacation. He wanted to check those incisions on the side. 

My incision was fine. I knew it was fine but okay, so I went in. The doctor came in with that pathology report.

I was by myself. My husband didn’t go with me because I thought they’re just checking the incision. It’s not a big deal. I’m going to zoom over, go in, let him check everything, and come back and go to work. But that did not go down like that.

He was looking behind the door, looking around this little tiny room. He’s like, “Are you by yourself?”

I knew right then what was about to come. I knew. I just had this dark cloud of emptiness that just left. I can’t even explain it. I’m by myself. At that point, I thought, ‘I’m not going to fall apart. I’m going to do this.’

There was a gut punch, the sucker punch of my life, especially when you’re thinking it’s just benign. “Nobody has lung cancer in my family. I don’t smoke, so this can’t possibly be lung cancer.”

They concluded that this was an unfortunate case of stage 4 non-small cell lung cancer.

Both lungs were involved. It wasn’t anywhere else in my body, but both lungs had innumerable nodules. No surgery would benefit. I wouldn’t have any lungs left if they took out all those little bits.

Digesting the news of cancer

It was as if it was almost like an out-of-the-body experience. A dream I’m going to wake up from.

He was very not compassionate. He was like, “I’m sorry, darling, this is lung cancer. Do you want this report? She’ll help you with the rest. Good luck.” Pat, pat on the shoulder. Out he went, unbothered.

I know it’s not his job to feel sorry for me or to coddle me or whatever, but it could have been a little bit more. This is life-changing here. Anyway, he did a good job. The nurse was very kind to me and said she was going to be praying for me, which I welcomed.

I kept it together until I was in the room alone. When she went to make the phone calls, I opened up my phone and texted my friend that was a hospitalist for that hospital. I said, “I have to see an oncologist. Who do I see?”

I was fine. I could hardly see the letters or the numbers on the phone because I was fighting tears. The nurse came back in, and I told her who I wanted to see for my oncologist based on the recommendation of my friend.

Thankfully, I had somebody on that side of things that was in the know, because I didn’t know any of them.

I remember walking out of that doctor’s office, and the ladies at the front desk were like, “Hey, how are you?” They had no clue what I just heard. They were just doing their job and being nice, but I remember just not looking up at them.

I just looked down and handed them my paper, gave them my debit card to pay my copay or whatever it is I had to pay. I just kept my head down walking out that door.

That day, I was dressed for work. I had on dress pants and heels, and I felt like I had cinder blocks for shoes on my feet. I was putting one step in front of the other just to get the heck out of there. Just get me out of here.

When I heard the click of my car door, I lost it. I lost my mind. I was weeping and wailing. If somebody was nearby, they likely would have called a crisis intervention officer to come to help me, because I lost it. I cranked up my car and just sat there. 

Breaking the news to loved ones

I had to call my husband and say, “This is what’s happening.”

I called my mother. She asked, “Do you need me to come and get you?” I said, “No, I can drive.” But I don’t remember the drive to her home. Then I called my dad.

The next day, I did a PET scan just to make sure there wasn’t cancer anywhere else in my body. It was a big 2 days.

I was on the phone the rest of the day telling people. They were calling me and sending messages because word traveled like wildfire. I was just mentally exhausted from the whole thing. To have to think about that and relive that in my mind…

People say it’s not a death sentence. But of course, I went straight to Google. I read about 2% or only teens, at the time, survive beyond 5 years. I thought, “I’m out. This is the end.”

That was heavy thinking about my own mortality. I still am forced to think about it, but I’m almost 4 years in. I have gained a lot of strength in that amount of time.

Lung Cancer Targeted Therapy (EGFR+)

Treatment and testing

My doctor initially, the gynecologist that found the nodules in the very beginning, was in our capital city in Jackson, Mississippi. When he asked about sending me to a pulmonary specialist, he said this is his friend. He knew him. I said, “Would you consider someone local to me?” He said he would prefer me to go see this person.

That’s how it unfolded. My doctor initially was already about 90 miles away from me. My mom lives there. It just made sense that since all the other doctors were there that I stay, too.

Plus, my whole reasoning for choosing doctors in that area is because the equipment is more advanced. They have incredible care within their hospitals. It’s just a personal preference for me.

Locally, we have a cancer center. We have 2 major hospitals. For me personally, I just chose to be there because I felt like there was better care there, more cutting-edge equipment 

I think it’s very important that I have a facility that I trust, a facility that I know will fight for me because they’ve proven that they can do that in my diagnosis. It was just a personal preference. Like I said, it’s about 90 miles away. It’s doable to go and come in a day by car.

Completing the diagnosis

My tissue was already at Mayo Clinic from the thoracic surgeon that sent it over. I’m not sure who connected with who, but my oncologist was able to ask them to complete the biomarker testing.

I waited a long time for that. It felt like it was like a couple of weeks of calling. I actually went there for blood work shortly after, and he was like, “I’m sorry. We don’t have it.” I was almost harassing him.

Finally, he did get it back, and he called me himself. He didn’t send his nurse practitioner or a secretary. He called me himself and said, “Okay, here’s what you need. Here’s what we’re doing. This is the plan. I’m going to send the prescription over to where you want it.” I picked CVS Specialty. 

My question was, “Can I have wine?” He’s like, “Oh, so you want to get sloshed now?” I’m like, “I have permission to do so, right?”

We laughed about that. His approach was, “Live your life how you would normally live your life. You just have to take a pill every single day. Don’t worry about restrictions. Do what you feel like doing.”

I’m going to be okay, but obviously with that comes side effects and a whole lot of things that I wasn’t ready for.

Treatment decision-making

At my initial appointment with the oncologist, there is a mountain of paperwork you had to fill out. He was with me for 2 hours because this was a new world. He told me that he was going to send off the tissue and request for further testing from Mayo Clinic.

He went down the list with all the possible courses of treatment: “If you have PD-L1, this is immunotherapy, this is what it does, and this is how you do it. Your hair will be fine. If you have ALK, it’ll be this. If you have this EGFR, there’s a brand-new drug called Tagrisso. It’s a targeted therapy. Take it by mouth. If you don’t have any, then you’ll be on traditional chemo infusion.”

The impact of a pill

I heard ‘a pill taken by mouth,’ and I’m like, ‘I want that.’ But it doesn’t work that way. You don’t get to choose exactly like that. He was rattling off all these letters and numbers, but the thing that resonated with me was the pill.

I was wishing I can do it, even though I had no idea about a mutation or a biomarker or whatever. Thankfully, he did.

Targeted therapy

I was EGFR T790M, and the oral treatment that I got to start targeted that exact mutation. It’s like I have the lung cancer lottery. If anybody can find something positive out of this, I felt like I had overcome the world. I thought, “Okay, I’m going to live. I’m going to be all right. More runway for me. Where are my pills? Give them to me.”

The FDA just approved Tagrisso (osimertinib) specifically for EGFR+ non-small cell lung cancer also with the T790 mutation.

I had seen people sick on infusion therapy, and I don’t want to be like that. There are people that are so terribly sick right now that are fighting just to get up out of the bed, feed themselves, and to go to the restroom.

I don’t take any of it for granted. I certainly do not brag and say, ‘Look at me. I don’t have to do all of that,’ because I know things will change. Eventually, there will be resistance. There will be a next treatment. I’m not going to get to sit here and be here forever.

I don’t take for granted that I was able to take something by walking to my medicine cabinet and swallowing a pill that has kept those cells at bay and has kept my cancer under control.

Treatment routine

For the very first time, I took my first dose at 9 p.m. In my head, I thought, “If I’m going to be sick from this, at least I will be in bed. I will be able to hopefully sleep it off.” That was my whole thinking around it, but it wasn’t like taking an antibiotic.

You feel funny within an hour. The side effects stay and come and go. 43 months in on the same drug, I still have no side effects. It’s just very weird and strange, but I’m thankful that I can still take it.

Side effects

At first, I felt very worn down. I felt heavy. It wasn’t that I wanted to sleep all the time, but I had very little motivation.

If somebody said you can stay in bed all day, I would say okay. That kind of leveled out. I thought this must be really working hard in my body, like a pregnant lady that’s tired. You’re growing a human; you’re going to be tired.

My body’s trying to get used to it and accept it.

There was a skin rash. I had these little things that looked like little acne bumps all over. But you couldn’t treat it like acne. If you tried to do that, it made it worse. 

I was able to take an antibiotic to combat that. It only lasted for about 6 months or so. I don’t have any skin rash anymore.

Then I had a new symptom of GI flares. Sometimes, there’s nausea and a lot of upset stomach.

There was no rhyme or reason to it.

What helped with side effects?

Imodium became a staple in my purse, car, and my office — everywhere. I even made a joke at work. If I’m running, don’t stop me. I’m sorry, this is a fact of life. This is how it is. I still have the GI flares from time to time.

Exercise and diet

Some days, I get to move my body. Sometimes, I feel absolutely exhausted. I don’t know if that’s a combination of medication, being in the middle of the crisis our world is in right now, and staying at home.

Maybe it’s an emotional thing. Getting dressed is a major ordeal.

I tried to move. I had an exercise bike. I try to get on it. I go outside and tried to walk. But the biggest side effect with Tagrisso to date is fatigue.

Some days, if I want to just sit or stay in bed, turn on Netflix, turn on some music, and sit in the recliner or lay down, I will.

When I don’t eat junk, I do feel better. Diet does absolutely play a part. I can feel when I’m dehydrated. I love coffee, so I would much rather drink coffee all day than water all day. But I can feel the difference between when I do drink water and when I don’t. 

I have to listen to my body.

I don’t have a port, so they actually stick me. It’s a lot harder for them to get a vein when I’m dehydrated, and it hurts. I get back to realizing I have to drink water whenever I’m going to the doctor. I noticed a huge difference when I don’t drink enough water. That often helps to boost energy.

I’m not a big supplement person. I know a lot of people rely on supplements, but I don’t. Every once in a while, I have vitamins and whatnot. Matcha and green tea, they say, are helpful. I might drink it today and then not for a month or 2 and then drink it again. I’m not consistent with it.

There is a holistic clinic near where my doctor is that does natural infusion. I badly want to go, but it takes $150 to do it. Insurance doesn’t cover it, but it’s all good things.

It’s supposedly all natural, and it would give you vitamins and minerals that your body needs to help. It’s specifically for cancer patients. 

It’s okay to draw boundaries

I wrote an article, and it was on not feeling guilty when dealing with a physical battle, whatever it is, especially cancer.

I don’t have any children, so I don’t understand what that looks like for some. I feel like as a wife, I have the responsibility of keeping the house clean and having a meal on the table when he gets home from work. Some days, I just don’t feel like cooking. That’s the last thing I want to do, and he understands it.

Don’t feel guilty for the things you don’t feel like doing. Your body has changed. You are the same person, but you’re different. There’s a new thing in you that’s changing, and it affects people differently. Some folks still work full-time.

It’s okay to say no to family if you don’t want to do a family gathering. It’s okay to just say, “I’m going to sit at home, and I’m not going to go to that.” It’s important that we understand that we’re dealing with a lot.

Some might not understand us because they look at us on the outside and think, “They look fine; they must be fine.” That’s always a good education topic. We all don’t look like the cancer patient on TV, but we are still sick.

Sometimes we just have to educate others about how we’re feeling and not feeling guilty about it. 

Getting the targeted therapy pills

My doctor called and said, “You have EGFR, T790. You need to be on Tagrisso. I’m going to call this then or send it up to the CVS Specialty pharmacy.” But they declined it.

I had no clue of any of this or how it all works. I’m on the phone with the secretary, and literally, she and I talked so much. I was writing letters. They were writing letters. too.

Thankfully, I had a very close friend that also works in oncology, and the doctor that she worked for prescribed Tagrisso. She said it has just been released as first line, so insurance companies don’t have the update because it is that new.

I got on the computer and Googled it. I found an article. I printed the article out. I put it in with my letter, and my husband thought to call the manufacturer, AstraZeneca, to see if they can help us.

He did. They wanted to speak with me. I talked to them, and they confirmed that it has been approved in September.

The lady at AstraZeneca said the insurance companies don’t even have the addendum yet because it’s that new apparently, and they’re later in their updating.

I did phone calls to AstraZeneca, to the insurance companies, and to the pharmacy like it was my full-time job for about 48 hours.

I wrote the letter. I printed out the article and sent it back to the insurance company. My doctor wrote a letter. AstraZeneca said they would be happy to write a letter, but it didn’t come to that. They did their own research and approved it.

In the meantime, AstraZeneca understood where I was and that I was a brand-new cancer patient. I needed to start my treatment. They put a starter of 15 pills, and I started that very next day free of charge. Everything worked out within about a week.

That was both an amazing experience and frustrating, to say the least, because I’m blind. I only ever had antibiotics for a sinus infection or upper respiratory sickness.

When the doctor sends in the prescription, there was really a lot of red tape you have to go through just to get in some sort of survival mode.

Here’s this cancer growing in my body. It’s been almost a month now. I need to fight this stuff, and I’m just walking around fighting to get the meds I need.

I was thankful. I was nervous to be able to start the drug because I thought of the possible side effects. Am I going to start throwing up within 30 minutes? Am I going to be able to hold it down? Because a lot of people can’t. 

Thankfully, my body accepted it, because there are many out there whose bodies won’t. It’s a really awesome, incredible, life-preserving drug. We can’t thank enough for the cutting-edge research done on that.

Hopefully, there’ll be something next when I need something that’s similar to what I’m currently on for EGFR resistance.

Progress monitoring

I go every 2 months for blood work, and my blood work is fine every single time. It’s another thing to be thankful for because so many have to come off of their chemo because of different blood counts.

Then I have scans every 4 months. I was doing every 3, but we got pushed out to 4 months just to not risk getting any sort of radiation poisoning. Everything has been stable since.

I do CT scans. I don’t do PET scans. I just do head, neck, and basically full-body CT with and without contrast. 

I’ve developed relationships with the techs and the nurses because I’m a frequent flyer! Sometimes they change out and I won’t know who’s there, but normally it’s the same people.

They’ve become my family. I could say, ‘Wink at me if it’s okay,’ and luckily I get same-day results.

Dealing with scanxiety

So many of my friends that I connected with and the lung cancer community have to wait days for their results. If that happens to me, I would lose my mind.

If I go get a scan at 7:30 in the morning, by 9 a.m., I’m sitting in the doctor’s office getting the results. We all have scanxiety. I’m thankful that I’m in a smaller community.

Living with Lung Cancer

Finally, Ashley shares how lung cancer changed her perspective, outlook, and her life.

To Ashley, she was lucky enough to be taking a daily pill instead of going to IV infusions, feeling like she still had some sense of normalcy. Despite her odds, she shares the gift of reflection and hope with her cancer community.

Here’s her story of living life with lung cancer. Thank you for sharing your story, Ashley!

Living with lung cancer

I made the mistake of going to Google. Then I started finding groups on social media and saw people that were living with this.

I thought, “There’s hope, and I can keep going. I’m not going to be taken out of here tomorrow. This is not a death sentence. I know what is possible. I know what the end result could be.” 

I started looking at it as a chronic disease and then one day at a time. Because one day at a time is all we get anyway. I’m able now to think about things from a different perspective. I can get low. I can get sad, but I try not to camp out there.

Initially, when I was first diagnosed, I said, “This is what intentional living is supposed to look like.” 

I always hear, “Cherish every day. Life is a gift.” Those are just pretty words. I didn’t truly understand it. It didn’t necessarily click.

When you’re faced with your own mortality and it is concrete that this might end sooner than later, then there’s a mind shift. There’s a perspective shift. There’s a new mindset that comes in.

Do I have it all together? No. Am I always positive? No. But I try to be positive, and I try to always share the good things in that Tagrisso group.

Inspiration in the community

I am proud to tell people I’ve been here for 43 months. To the person that just started last month or today or last week, I want to give hope. There were people in front of me through a screen that offered me hope when they were sharing their story.

None of it is obviously to brag or anything like that, but just to say I’m on this journey. I was 36 years old. It felt like the rug was ripped out from under me.

Ultimately, it’s the club that nobody signed up for. It’s the social club, the army — whatever you want to say —that nobody signed up for.

We were drafted, but there’s an entire international group of incredible people within this community that simply want the same thing, and that’s more runway.

It helps to have people that understand you.

My husband lives here in this house with me. We sleep in the same bed every night. But he has no clue what it feels like to have lung cancer. I can talk to him and tell him how I’m feeling until I’m blue in the face, and he still doesn’t have a clue.

When you connect with someone that also has just cancer in general, whether it be breast or any of it, we understand each other in a way that others can’t understand us. We understand a different outlook on life that others can’t understand. 

Changing outlooks

I often say that I wish people could get just a glimpse of how we look at life now than before. I appreciate things that maybe I took for granted before — all the griping and complaining because somebody pulled out in front of you. Well, it’s not really important. Move along. 

My doctor said you would revert right back, but I don’t want to do that.

A lot of people say cancer was the best thing that happened to them. It took me a while to understand that, but I understand it now because I’m loved by so many. Nobody necessarily feels sorry for me, but they show love. They check in on me, send me a message, and are praying for me today.

Prayer is the big thing in my life. It means a lot that somebody is thinking about me. Before, maybe I wouldn’t get those. It’s just been an incredible experience to be loved by so many people and also to be able to share like I’m doing today.

When I see or hear of somebody that’s newly diagnosed with cancer, regardless of what kind, I feel compelled to reach out to them to say, “Hey, you’ve got this. You’re going to fight. It’s going to get rough. You’re going to experience this, this, and this, but you’re going to be able to keep going. You’re going to get up every morning. Push through even when you feel like giving up, because giving up isn’t an option.”

We were handed this for whatever reason; we don’t know the reason. At first, I thought I was being punished for something, but that’s not how it works. That’s not how the universe serves us. That’s not what whatever higher power that you look up to wants.

This is merely something that has happened to us and not who we are. I only was able to grasp that through time, because it felt like I did something wrong to deserve this diagnosis, when in fact, it just happened. Like a car wreck. We didn’t know what tomorrow held before lung cancer, and we certainly don’t know what tomorrow holds with it. I try to keep that perspective as well.

Being able to take a daily pill

I think at the time, and even now, the pill road was more of a freedom. It’s hard going to the doctor when I’ve had other things come up. If it like was going to the doctor every single day, it’d be like a full-time job.

Taking the daily pill gave me a sense of feeling more normal, even though normal is basically sitting on our clothes dryer.

I try not to use the word ‘normal,’ because I don’t think there is really a normal. But for my own life, I felt like it would give me more of a sense of normalcy.

I wouldn’t be running to the doctor. I wouldn’t be going to the infusion room. I wouldn’t be constantly checking labs.

I had taken a pill before for something, and so that just felt like the normal thing to do. It was something I knew, whereas going to a chemo room with other sick people that were in all kinds of different stages and sitting for however long just felt heavy.

And it is. It has to be. I’m not there, but I have friends that have gone there. They make friends, which I like that part — developing relationships with those around you. I just wanted to be able to swallow a pill at my own home and not feel like I had to be interrupted.

I know one day that’s coming for me. I will have to go and do that. I feel like a targeted therapy is a little bit lighter on your whole body, the whole makeup of all the cells in your body, because it only attacks the bad cells and not the good, unlike what an infusion would. I guess it’s that piece.

There’s also that selfish piece of I want to be able to continue living as normally as possible without the interruption. That’s the selfish side of the treatment.

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Categories
Lung Cancer Small Cell Lung Cancer

Montessa’s Small Cell Lung Cancer Story

Montessa’s Small Cell Lung Cancer Story

Montessa shares her small cell lung cancer story that started with a diagnosis at 28 years old. She highlights how she got through treatment, from concurrent chemotherapy and radiation to brain radiation, and recovery.

She also talks about how she navigated life with cancer, being a non-smoker blindsided by the lung cancer diagnosis, how she approached work and time off, finding support in a cancer community, and her lung cancer patient advocacy work. Thank you, Montessa!

Montessa timeline
  • Name: Montessa L.
  • Diagnosis (DX)
    • Lung cancer
    • Small cell
    • 15 cm mass
  • Age at DX: 28 years old
  • 1st Symptoms
    • Chest pain
    • Lingering cough
  • Treatment
    • Concurrent chemotherapy and radiation
      • Chemotherapy:
        • Cisplatin & etoposide
        • Then substituted cisplatin with carboplatin because of side effects
      • Radiation: 22 straight days
    • Brain radiation
      • 13 sessions

Table Of Contents
  1. Videos: Montessa's Story
  2. First Symptoms
  3. Diagnostic Tests & Procedures
  4. Lung Cancer Diagnosis
  5. Treatment Plan
  6. Chemotherapy & Side Effects
  7. Radiation Therapy
  8. Navigating Life Through Treatment
  9. Support, Community & Advocacy
  10. Small Cell Lung Cancer Stories

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


Videos: Montessa’s Story

How I Got Diagnosed
Treatment: Chemotherapy & Radiation
Navigating Life with Cancer

First Symptoms

Tell us about yourself outside of cancer 

I appreciate that we can’t be defined by a box. Beyond patient advocacy, I’m a mentor teacher. Specifically, I work with novice teachers.

My background is a special educator. I have a master’s in autism and inclusion. I really prefer working in populations in our schools that have autism or any teacher who is working with a large group of children with special needs.

I do work for that, and I’ve turned some of the advocacy work I’ve learned from lung cancer into education. I am currently a doctoral student as well. With all of these things, I don’t know how I could keep my calendar and my mind managed!

What were your first symptoms?

I had chest pain, a cough. I remember because it was a day in September where we were having a going-away party. I have a friend in the military, in the Navy, and she was going to be stationed away.

That’s probably why that date and month stick in my head.
I went to the urgent care clinic. They poked around and said, “Oh, you have costochondritis, inflammation around the rib cage.”

It sounded legitimate because I had been working out that summer pulling weights. I don’t know, you trust the medical professionals.

They gave me Motrin, and I went on about my business. Then I developed a cough that wouldn’t go away. A lingering cough. The chest pain was still there.

Describe the first doctor’s visit

I went to a primary care doctor. This was a new doctor. I had never seen this doctor before going to meet her. They said, “Oh, you have bronchitis.” Never gave me an X-ray.

At the time, I was 28 years old. I didn’t know I was supposed to have an X-ray for bronchitis. I work in a school system with kids. I was like, “Sounds legitimate. Maybe the kids get sick. Maybe I just got sick.” 

Then she said, “You have a whopping heart murmur. Anybody tell you that?” I was like, “No, nobody has ever told me this in my life, that I had a heart murmur.”

She was keen to the heart murmur. She sent me to go get an echocardiogram, but never gave me an X-ray and sent me home with an inhaler and antibiotics. November, I remember driving home.

I had back pain. I would have back pain throughout. Even my teachers I was working with would later tell me that I would complain about back pain, but I didn’t connect the two.

Trip to the emergency room (ER)

By the first week in December, I was in grad school for my master’s. The pain came back. I lived with my cousin at the time. I called her and said, “The chest pain came back. You have to take me to the ER.” 

She’s like, “Oh no.” She had told me, too, that the cough was still there even after I had finished the antibiotics. I said, “Oh, I made another appointment. Maybe it just lingers. I don’t know how bronchitis works.”

She said, “Shouldn’t that cough be gone?” Red flags are coming out. I went to the ER at the regular hospital this time. I was in so much pain.

Ironically, by the time I got home from the grad square, I’m like “Oh, I have to take a test.” I have no idea even how I made it through the test because I was really in pain.

The pain had subsided, and I wanted to eat something. I was not worried. I said, “Maybe the ER can give me some medicine, so go ahead and take me to the ER.”

She took me, and they immediately hospitalized me after realizing my oxygen level was like 83 or 85. 

They did an X-ray and said, ‘We found a mass, and we’re keeping you.’

All I heard was ‘IV,’ which meant needle in my head, and ‘biopsy,’ which meant surgery. I was like, ‘I have to go to work in the morning. No, I can’t stay here.’

I’m sitting in the bed, if you could imagine, sitting in the chair. My cousin’s standing above me, [saying], “They found a mass in your lung. You’re sick.” I’m like, “No.” 

In my head, I’m thinking somehow I’m functioning, I’m walking around. I can’t afford these bills. I’m a teacher. Not knowing, the fear of the unknown. Right now, it’s all questions.

They said, “Do you want to see the X-ray?” I said, “Let me see.” I had no idea what I was going to see, but the way I describe it to people is if you have no knowledge of what your lungs are supposed to look like, if you look up in a dark sky with some binoculars, you’ll see dark lobes and maybe some white lines. 

Imagine someone taking a paper towel, balling it up, and covering one of those lenses. Three-fourths of my lung on the left side was not visible. Only one-fourth was visible. That’s how large a 15-centimeter mass was by the time they found it.

Processing the gravity of the situation

I looked to my cousin and said, “Oh, I guess I’m staying.” I still had no idea. At that time, they were just whispering things like, “Oh, is it possibly cancer? Possibly not. We don’t know. We’re still going to do some tests.”

Actually, they said they were going to do all this before I saw the scan. Then it made sense. I understood. I visualized in my mind what the mass was that they were talking about.

Things started becoming clear, like why I was having trouble sleeping. Before, I thought it was my pillow [and] everything else.

Describe your mindset as a 28-year old non-smoker facing this diagnosis

My normal temperament would have been pessimistic, like, “Oh, well, it’s me.” Go into a hypochondriac mode. 

That’s where my faith comes in and part of the book that I ended up writing.

I heard a voice of life whisper to me and say, ‘This is going to be bad, but it’s not going to kill you. It’s going to be a healing testimony for someone beyond yourself.’

I didn’t know at the time whose story this was for or what journey I was going to go down, but I had to hear that because my normal temperament would have been, “Let me lie on the bed.” I would have been a worrywart, a “negative Nancy,” the whole way through the journey.

Everything happened rapidly. I didn’t have time to process, especially when you’re sick like that. They did immediately hospitalize me. 

Diagnostic Tests & Procedures

Describe the needle-guided biopsy

That was the first time I was hospitalized. They did the needle-guided biopsies, where you sit on something like a CT scan or ultrasound. They can visually look at where they’re doing the biopsy. They get a syringe or a needle and take out the tissue. I believe I was awake. It was not as invasive.

I got a call back probably at the end of that week, and they said, “Hey, we didn’t get enough tissue sample. You have to come back in for an open chest biopsy.”

The doctors and surgeons were going back and forth, I think because of the theory of cell spreading. I didn’t know all the science behind what they were explaining at the time. I went back probably a week later.

Dealing with such a large mass

The surgeon at the time was trying to connect me with an oncologist. My cousin, who worked at another hospital, was actually on the call the whole time because he didn’t believe it the first time I was in the hospital with 15-centimeter mass.

He told me, “You must be mistaken. It is not a 15-centimeter mass.” I still had no idea that it was huge. Even though I saw it, I didn’t know it was abnormally huge. I just said, “Okay, it’s the size of a cantaloupe.”

The doctors were very calm telling me these things — until I went later on, and people I met in patient advocacy were like, ‘That was humongous!’

I was the talk of the water cooler probably because everybody would come in and say, “Was anything lighting up? Did you visibly show anything?” That was probably the medical student there. 

Describe the open chest biopsy

I did break down and cry that time. I don’t know why they tell patients some things, but they’re like, “We can’t fully sedate you.” In my mind, I was thinking I was going to be awake.

It had something more to do with the intubation or something. They couldn’t do something because of me lying down flat on my back. I wouldn’t have been able to breathe, but I still was out enough that I do not remember anything. 

Lung Cancer Diagnosis

What do you remember from getting the diagnosis?

It wasn’t until I met my oncologist that I got the diagnosis, even though they probably knew about the cancer because the surgeon was trying to connect me with an oncologist. I didn’t get the diagnosis until I met my oncologist that next week. The doctor was very, very calm.

I have a large family here. Before my mom came up from North Carolina, my extended family was driving me back and forth. A male cousin and I were in the office, and the oncologist said, “It’s a really stupid name. We used to call it oat cell cancer because it looks like oats in the microscope. Now, it’s small cell lung cancer.” 

My cousin and I looked at each other, laughed, and said, “That is a dumb name.” He said, “We’re going to hospitalize you and start X, Y, Z.”

I asked if he could give me one more day because my mom and my aunt were coming in soon. I asked for one day before I had to go back to the hospital.

I don’t know if he willingly did it, but he caved in and let me wait one day until they arrived. I can’t remember the exact day, but it was one day in between. He let me wait, and then immediately I was back in the hospital again.

What were the details of your lung cancer diagnosis?

I started looking up what “small cell” was. I had no reference. My grandfather had died of lung cancer, but I still had really no reference of how deadly the disease was, especially the difference between small cell and non-small cell. I think the paper said “advanced.” It might’ve said “extensive,” because usually it’s extensive or limited.

I know I had limited, but I don’t know if the doctor put “extensive” on there as a call to speed up the process of things or because the tumor was so large at the time. They thought it was in the lung. By the time they found it, it was in the mediastinum area, but it had not metastasized. 

I looked at it, thinking, “How could this be right?” Because again, my body wasn’t functioning at 100% by any means, but I was going day-to-day at work, and then immediately, everything stopped.

How did you process how the cancer would impact your life?

Looking back, I couldn’t wrap my head around it.

I took what he said and heard, “You’re going to start chemo. Your hair might fall out, might not. My patients usually don’t get nauseous because I give them X, Y, Z medications.” 

I remember him talking about the type of chemo I was on would impact my kidneys and that I should drink a lot of water. I’m surprised I could remember all this, but he was telling me all of these things.

Describe the radiation treatment plan

My oncologist did say we’d start radiation, but the radiation oncologist talked more about that treatment side. I think he said after 6 or 8 cycles of chemo, we would start radiation.

Actually, they started a PICC line first, before I had another surgery, to start the first dose of chemotherapy when I was hospitalized. 

»MORE: Read patient PICC line experiences

I didn’t know about some of these other issues, like I had fluid around my heart. I ended up getting a pericardial window when I was hospitalized at that time. They put a mediport in.

I don’t even remember him telling me if I was getting a mediport, but it was the best thing that could have happened when they did that surgery as well, to also put the mediport in.

I was there longer than they thought because the fluid wouldn’t drain off from that pericardial window. I remember him coming in because it was around Christmastime, too, so he was on vacation for some of that time. There were your physician assistants and others coming in during that time.

How did you break the news to loved ones?

That’s a good question, because I don’t even know if I called anyone to tell them. My cousin who was with me at the time, who lived with me, called the doctor. She also called my aunt, and she told her to call my cousin Keith, who’s an interventional radiologist at the hospital, and get us connected. 

We got on the ball, and Keith also called over to the hospital to talk to the doctors to get the doctor language and get what was going on. My cousin called my parents and said I was in the hospital. They called another aunt. The chain got passed through.

My dad would always say, “Tell Montessa. Telephone or telegraph. Tell Montessa; it’ll get around.” I lived with some of my close friends from work, so one of them called the others, and they connected with my principal [manager at work]. Three of my really good friends from work ended up coming to the hospital that night.

»MORE: Breaking the news of a diagnosis to loved ones

Did you get a second opinion?

I was very happy with my oncologist. I trusted my family, so I went with him.

But I think people need to get second opinions. I’ve met several people now, all these years later, who all needed to get a second opinion. I have a friend now dealing with a different type of cancer who got a second opinion, because she didn’t want this radical surgery that they had recommended at first.

We patients have to be educated.

All they can do is tell you no or yes if you go get the second opinion. I didn’t go to one — I won’t name the hospital or treatment center — because I had a coworker who said they treated her husband like a specimen or a research project.

They weren’t looking at a holistic approach, and I needed somebody a little bit more personable. I just wanted to stick with my oncologist.

Treatment Plan

Describe the start of treatment (chemo, surgery, radiation)

Originally, because they wanted to start the chemo right away, they started a PICC line.

I won’t forget this either, even though I do say sometimes chemo has affected some of my memory, but they put the PICC line in.

I remember it wasn’t pointed in the right direction. They had to go back down to interventional radiology to get pointed in the right direction, and these things in my mind when they’re like, “We can’t get it.”

Again, I don’t know why they tell patients all these things, but they were like, “If we can’t get it to work through your arm through here, we have to go up through your thigh or something.” I’m like, “Oh no,” but they got it working and started the chemo right away.

I must have had the surgery after that first round. They put the mediport in and did that pericardial window. I started radiation when I was hospitalized as well. 

The important role nurses play

I remember one of the nurses saying, “I want it to be there to start the chemo,” which was quite interesting. It shows you that personality and the bedside manner of the nurses. They started the chemo then. 

You had to travel between different treatment centers

There was a different little caveat because when I was released from the hospital, my oncologist had me go to an infusion center at another hospital, but the radiation oncologist was at the original hospital. I’ll say hospital A and B. I would have to get picked up, and the church arranged rides for me. 

This was just miraculous. They arranged rides for me to be picked up at my house and took me to radiation treatment. Somebody picked me up from the radiation hospital A and took me to B to get the chemotherapy on the days that I had both radiation and chemo. 

Chemotherapy & Side Effects

Describe the chemotherapy treatment regimen

The chemo would be cycles of like 3. Week 1, I’d have blood work done on Monday, Tuesday, Wednesday, and Thursday. Then I’d get chemo Friday. 

I’d get fluids. They started with cisplatin and etoposide. Eventually, I had to change to carboplatin because I had ringing in my ears. The platinum-based chemotherapy was affecting my hearing. 

Somebody would pick me up [and] take me to the hospital every 3 weeks. That week it would be chemo week, and my mom would come up from North Carolina [on] those weekends when I had chemo treatment. Then I would have another week of blood work. It was always blood work, then chemo week.

What were the chemo side effects?

Every 3 weeks, I’d have these chemo weeks. Then it got to April. I was so fatigued that the doctor had to change the regimen a little bit. I had to take a week off of the chemotherapy treatment.

That type of fatigue, I can’t even describe it. Even to walk from my apartment around the corner to a neighbor’s apartment took every bit of energy that I couldn’t muster up.

»MORE: Cancer patients share their treatment side effects

Self-advocating to get the regimen changed (because of the fatigue)

Yes, because in my mind, I didn’t think that my oncologist was going to do anything. I give him credit, too, because from my other little advocacy groups I’ve been a part of, sometimes they say that the doctors don’t even ask them as a whole picture of, “How are you doing? Are you having any insurance problems, money problems? What are your issues? How are you?” Not just the treatment of the disease but, “How are you?”

I just told my oncologist, “Hey, I’m so worn out, very fatigued.” That week (off) actually made a difference. It helped.

What were other side effects?

Like my oncologist stated at the very beginning, a few of his patients get nauseated. I think he tries to get out ahead of that and have patients handle the nausea. He said, “You should drink water.”

The days I was nauseated were the simultaneous days of radiation and chemo. I would go to chemo those next mornings, and I would feel a little queasy. Those mornings, I tried to drink water and tried to stay hydrated. 

Describe the hair loss and how you handled it

The hair fell out after I got out of the hospital, and my mom helped me comb my hair. Like a little office trash can — my hair at the time, I had an Afro, and so all of my hair completely filled that trash can, just coming out in clumps. I had little sprigs of hair. I went to my hairdresser and just got it shaved off, and it was bald.

I had come to the resolution before that I wasn’t going to wear a wig, because it was too hot for me. I didn’t know what my head was going to look like underneath, but I just resolved to the fact that I would be bald.

»MORE: Patients describe dealing with hair loss during cancer treatment

Any tips on dealing with the hair loss?

Yes, I just went through this with my friend who was just recently diagnosed with uterine cancer. When an oncologist tells you, “You could lose your hair. It could not. Maybe it’s going to stay in.” Right then is when I decided, “I’m going to get some hats, or I wear some scarves. I’m not going to wear a wig.” In my head, I had already decided.

I didn’t know what my head was going to look like. I still didn’t know for sure what was going to happen. I didn’t know what that process of losing my hair was going to look like. 

My scalp became tender, and it hurt when my hair fell out. Who knew?

My hair was braided when I was in the hospital. Then coming back out and having that Afro, the hair was just coming out in clumps. When the hair was scraggly on my head, I said I looked like a cancer patient.

That’s very stereotypical, but my hair looked like little sprigs coming out of it. I said, “It’s better just to get it clean shaven, and maybe it’ll grow back even.”

My mom was there with me at the time. We went over to the hairdresser, and I remember her closing the door to give me some privacy. The hairdresser just cut it off.

Wigs are beautiful. Now I see a lot of very stylish ones. I just didn’t want it because it was so hot. It would feel like it was hot on my head, but you’ll see in some of my other advocacy pictures, I used to wear a wig to chemo, sometimes Afro wigs, and I acted like that was my hair again!

It was hot also because of the hot flashes from hormone therapy (Lupron)

I did have hot flashes. I remember joking with my coworker at the time. She was older, and she would always have a fan on. “It’s always so cold in here.” “Don’t turn this fan off.” 

Then I said, “I know what you’re going through now because having these hot flash attacks now, I can’t joke with you anymore.” It’s like, “Now I understand. Now I can walk in your shoes. I understand why you have the little fan on.”

Radiation Therapy

What was the radiation treatment regimen?

The radiation oncologist explained it was going to be 22 days straight of chest radiation. They were going to resize and re-image the area.

They wouldn’t be radiating good tissue, because with small cell lung cancer, it usually responds well to that first round of treatment, but it tends to come back. The goal was, of course, to shrink that tumor with simultaneous radiation and chemo at the same time, so they explained.

Describe the actual radiation treatment 

For the radiation treatment, it was very painful initially to lie down flat. It was extremely painful. It was so hard to breathe that I would cough.

All of these tests — MRIs, CAT scans, the radiation treatment — you had to lie down flat. I had to come up with a systematic way of lying there. I closed my eyes, and the machine moved over me.

I would count how many times it moved to know how close the treatment was to being over. I’m counting, like, “One, two,” in my head. I visualized how many times I had to move and get up from the radiation treatment. 

What were the radiation side effects?

One of the side effects was I got a dark patch on the circle of my front and back from where the radiation was. They tell you some products to use beforehand, like Aquaphor. I started using some of those not during the treatment, but after. You could put the Aquaphor on to treat those scars.

I still have scars even from the surgery that I call my battle wounds. It took a long time for the dark patch to fade, the dark patch from the front and back.

It’s just something you notice after the fact. I don’t think I noticed it during treatment. You just look down one day, like, “Wow, look at that dark treatment.” 

It was also so painful even to swallow saliva at one point from that treatment. I don’t know what made the pain go away. I don’t know if it’s just as they re-image the area that I can remember lying on the sofa, and it just being indescribable pain to just swallow saliva from that radiation treatment. 

You don’t know what side effects are coming from what, because I was doing both radiation and chemotherapy at the same time. My red blood cell counts were down.

I had to take shots for that. With chemo, I got a shot to boost the white blood cell counts. You just have simultaneous side effects that you can’t pinpoint what comes from what.

Making treatment decisions

Chemo ended in April. Then in June or July, I remember the research coming out, because by then I was reading everything about prophylactic cranial brain radiation. This is the time I thought I would be able to navigate my choices.

During chemo, I had met a lot of cancer patients, mostly breast cancer patients. I met somebody with stomach cancer. They would tell their stories, like, “Oh, well, no, I got surgery, and then I didn’t have to do this.” My church had a cancer ministry. I’m meeting people, like, “Yes, I chose not to do X, Y, Z.” I was like, “You had choices?”

Like, “Wow, you got to choose.” When this news started to break in my head, I was like, “Okay, now I’m going to have choices. I’m going to have options.” I thought I could ask my oncologist, “Basically, can I choose not to do this and choose to do this?” 

I went in, and I knew what the radiation oncologist was going to say. I was like, “Can I have an option?” I’m going to ask the radiation oncologist, “Would you get brain radiation done?” She’s like, “Yes.”

Describe the plan with brain radiation

Sometimes lung cancer will spread to the brain, this primary place, so this was a prophylactic. The radiation was to prevent the cancer from spreading to the brain. I’m sure they had been doing studies before, but I was just reading the research around the time I was sick. 

Even after that treatment, I remember then going back to the surgeon because part of the mass was still there, though it wasn’t active.

There were no signs of cancer, but they thought it was the scar tissue. The tumor was just folding in on itself, but they couldn’t do surgery because the remaining mass was on my pulmonary vein. If they cut that, I could die on the operating table.

That was probably the most devastating for me, to go through all that, get to it, and not be able to take the rest of the tumor out. That was probably not the only one, but one of the breaking points, when they said, ‘Oh, no, we can’t do that surgery.’

Describe the brain radiation

It was 13 days of brain radiation that I had. That process was very different than the chest radiation, because it looked like a mesh-like mask. They conform it to your face, and they tack it down to the table. This mask is over you. 

I decided to keep the mask after treatment because I said, “Every year, I’m a cancer survivor.” Even though I never followed through, I was like, “I’m going to put a sticker on this mask every year,” like a cancer-versary.

Any guidance to others on getting through this type of radiation?

I closed my eyes and tried to count how many times that machine moved. If you are claustrophobic or you don’t like anything over your face, just try to breathe in or do some breathing exercises. Keep your eyes closed during that treatment when they put the mask over you. 

Now there’s so much technology, even the CyberKnife, on how they can do it. Then the key is to lie as still as possible. Don’t move, and it will be over quickly. That was my ammo throughout all of those sessions, to just lie there, get it over with, and count how many times the machine moved before I could get out of there.

How did everything look at the end of treatment (final scan)?

My whole scalp, the top of it was dark. It was odd because I had hair here, the nape of my neck, so it looked like a mullet with no hair on the top. I had to get that cleared up [and] cut them in back, too.

It was interesting that the hair grew there, and I guess that’s the part where the brain radiation was, the cranial part up here. I would get some type of ointment for my head to my scalp.

I was still bald, but until looking at the pictures, I didn’t realize how dark my scalp was. It was a two-tone for my head. 

I was hospitalized in January or late in December. That’s when I started the radiation. By March, the scan started coming back clear. The PET scans showed there was no evidence of the disease. 

The chemo cycle still continued until the end of April. I believe it was every 4 months to get a scan, and then it went to every 6 months. Before I turned 35, they were like, “When you turn 35, you have to go get regular mammograms, because the radiation to your chest put you at risk for breast cancer.”

In my head, I’m like, “I remember signing my life away, but I don’t remember reading that specific side effect.”

Navigating Life Through Treatment

Were you able to drive yourself to the appointments?

The brain radiation, during the chemo, somebody drove me to all of those because some of the medications I was on also made me very drowsy. I couldn’t really drive and be loopy. Some of those pain medications made me out of it. The church organized those rides to pick me up.

I would drive myself to go get the blood work on the weeks I didn’t have the chemo, because I wasn’t on the pain medications the whole time. The anti-nausea medications made me drowsy, too, so they drove me to those. 

I remember the last day of my brain radiation was my first day back at work. I’d missed a whole half of the school year. The kids weren’t there yet, but it was the pre-work for the teachers. I went in and left to go get my last brain radiation treatment.

I came in that morning for check-in and did half a day, then left to go get the brain radiation treatment. I’m like, “Look, I’m tired of sitting here.”

Do you wish you had taken more time off?

I probably took the right amount of time off, because it was good to have a clear start. Originally, I was supposed to go back in May. I would have missed months and come back almost mid-school year, trying to wrap up. It was a clean break to start back. 

I was strategic about the time I still had to take off because I was going back every couple of months for checkups and more scans. I remember even my aunt working it out one time I had to get a bone scan.

I went to work. Somebody picked me up from work [and] took me to the hospital to get injected with that substance they inject you with for a bone scan. Some radioactive stuff. [I] went to go get injected, and you have to wait a couple of hours. 

They brought me back to work, finished the day out, [and] went back to the hospital to get scanned. I think I had no leave, so I had to strategically work things out.

Any guidance for others on how to approach work?

This is a good conversation. Really, I just went through this with my coworker, and I was telling her, “If you have to take time off…” We have a sick bank leave, and you have to go fill out the paperwork with our union or bargaining agreement.

The stigma of “not looking sick”

This is a stigma with cancer. Sometimes people say, “You don’t look sick.” I said, “I’m going to be walking in here (during treatment),” and they’re like, “She’s walking. How can she not work?”

I was young, and she said, “Who cares? Your doctor has written this note for you, and it says you can’t work.” Looking back, I know there’s no way I could’ve worked.

At that time, I didn’t envision how much I was going to be going back and forth to the doctor and how long these chemo sessions were. Actually, I was in there 6 hours all the time.

You don’t realize you can only focus on yourself. You can’t focus on work right now. You can’t do that. It’s not plausible because still it was a whole shift at work. Now you’re in a different life. 

Any guidance on how to deal with the PICC line?

You can relate it like an IV. It’s not going to be in there permanently, and it’s in a better position because it was in my upper arm. It wasn’t right here at the bending part of the arm. 

You’re awake when they do the procedure, so it’s not invasive. I don’t know if they do it for people if they’re outpatient, but we know it was fine because I was already in the hospital, and they could maneuver it or treat it right there.

»MORE: Read patient PICC line experiences

There are products that help with quality of life with things like PICC lines

I just came from my checkup at the Cancer Treatment Center, and they’re putting a covering in there. They had started an IV, and I’m like, “Those are much better.” I knew band-aids used to tear my skin, so that new bandage they have that they can wrap around you is really good.

You don’t think about these little things. I can remember peeling off the coverings very slowly. Some of those bandages, you hold your breath and pull it off.

Support, Community & Advocacy

How did you get through treatment?

It’s important that something else I had to learn was swallow your pride, and don’t be afraid to ask for help.

Like that day when I was fatigued and having to go walk to my neighbor’s apartment, I had already had a ride scheduled. 

Our church was having a big event that happened to be that week that I would end up having chemo. I had to go ask my neighbor for a ride. Just swallowed my pride to say, “Hey, I need help. I can’t do this on my own.” I had friends who supported me, my family, extended family, and the church family as well. Their help was a big part of it.

Then finding something to do, like a hobby. I remember doing some arts and crafts when I first was diagnosed, before I knew how long I was going to be home for. 

Now everybody knows what it’s like from being in this pandemic, but being home when you’re used to being out, or out and on the go all the time, isn’t easy. Find things to do and pick up hobbies. Read books. I read a lot of books and picked up different hobbies. I actually picked up painting now.

Just finding things to have an outlet. I was using a lot of Google, but that might not always be a good thing. You probably have to have your time limit of what you read on the internet as far as medical concerns.

Asking for help is tough but necessary

Yes, and it’s hard to realize, especially if you’re young. Even if you’re an older, independent person, and you go to, “Wow, I can’t drive. I’m too loopy; I can’t drive. My mind is too drowsy. I can’t do it,” or, “I’m not feeling well, I need help. I need somebody to bring me some groceries or food.” 

Things you don’t think about, just the care of people. You really find out who your friends are, too. Also understanding what some people can deal with.

One of my brothers didn’t want to see me bald, or he didn’t want to see me in that state. He wanted to visualize me as he knew me before the sickness. That’s the picture he wanted to maintain in his mind.

Importance of self-advocacy

You can’t be afraid to be a self-advocate for yourself. That means asking questions, and if you don’t know the questions to ask, have somebody there with you. I met a couple recently, and the wife was too emotionally distraught, so I told her husband, “You’re going to have to be the one to ask these questions now.” 

Because I’ve been doing lung cancer advocacy, I was able to give them some questions. This picture is my mom and my sister with me as a celebration of life when I started getting treated at cancer treatment center. There they are, and this is a fight.

I think I don’t know if people realize that cancer is a journey, but it’s also a fight. You put your boxing gloves up and fight whatever comes at you. Imagine a boxing bag in front of me, kickboxing bag or whatever, and punching it down. Yes, so lung cancer can’t defeat you.

There’s a famous poem about that, what cancer cannot do. It doesn’t define you. I’m not just a cancer patient; I’m so much more than that.

What are the top updates that small cell lung cancer patients should pay attention to?

I think it depends on what your focus is when you come out. At the time in 2006 when I started reading all that information, of course, it was bad.

I saw that the bridge had not been moved in the way we treated lung cancer patients, period, non-small cell or small cell. 

I was angry, and I turned that anger into advocacy and having a voice. I saw when I got into that advocacy work. I would go to these conferences. Then I saw that there were a lot of things for non-small cell lung cancer (NSCLC). In the last 5 years or so, there have been a lot of advancements for non-small cell lung cancer. 

If you turn on your TV, you could see a Keytruda drug announcement or other commercials and advertisements for lung cancer treatment options for non-small cell lung cancer, specifically for immunotherapy. We were waiting.

We want to focus on small cell lung cancer [and] say, “Okay, look, some drugs and some of these treatments, we’re not going to be the Cinderella step trial of lung cancer. Let’s get this out here.” I started to realize that there weren’t many of us who have small cell lung cancer who are still surviving. 

So we wanted to give that voice. Some of the other advocates are like, ‘Let’s show them survivorship. Let’s show them hope.’

I want people to know that if your doctor tells you, “Go home and get your affairs in order,” which is what I was hearing from some patients in 2006. Matter of fact, I just heard it from somebody. He didn’t have lung cancer; he had another cancer. They told him the same thing. 

I’m like, “No.” I said, “Your doctors aren’t God. Nobody knows.” Sometimes I think your mental state can help you through that survival, [as well as] who you surround yourself with.

Find your cancer community

If you get involved in some of these groups that have the same cancers you have, you can hear stories.

  • How did I get through the hair loss?
  • How did I get through the neuropathy?
  • How did I get through this?
  • What stories did I read? 

You have somebody who’s walking through the journey with you. Your family is fine. They’re there. They have their own journey being caregivers, but somebody who is walking that journey with you, or has walked it, I think it’s very important that we get connected.

I guess ‘connected’ is a keyword. Just like when I had to swallow my pride, you need to get connected with people or a network of people. 

I know some people don’t want to do that. They want to keep it private to themselves, but I think you have to find someone, even if you go to a therapist. Therapy is not bad to get someone to talk to. Keep your whole person — mentally, spiritually, physically — whole and healthy.

Small cell lung cancer and new treatments

We are on the verge of something. You cannot imagine how many times I’ve been contacted in the last couple of months. I think it was in 2019 that Tecentriq was made from Genentech, an immunotherapy drug for small cell lung cancer.

Now the dates are blurred together, but I’m glad that this is what I’ve been waiting for it and seeing we are on the cusp of saying options, being plural, as treatment options for small cell lung cancer.

I just can’t wait to see that there’s going to be X number of genetic biomarkers for small cell lung cancer, so we can have targeted treatment. How did we know?

I had faith and I heard that word, too, but how do we identify these other patients who might be 12 years down the road with the regular treatment option that hasn’t changed in 30 years, versus the people that will work with this immunotherapy drug?

I hope they have hope. There’s a new group of small cell lung cancer patients who bring a voice to the advocacy as well, who had an EGFR mutation that then transformed over to small cell lung cancer. 

At one point, a researcher told me that even the tissue samples weren’t around to go look at my tissue samples and have them re-examined to see if by chance I have an EGFR mutation. It transformed, but by then the tissue samples weren’t around.

The trend toward personalized and precision medicine

I don’t know if they’ll automatically do it for small cell lung cancer, but I think we’re on the cusp of that happening. We have a stigma in the lung cancer community, as it’s associated with smoking.

Now things are changing, though much of the focus has been on non-small cell lung cancer. Of course, we are the smaller percentage of people, but 10% of the people have small cell lung cancer. That’s still a lot. That’s still a lot of people who will be diagnosed with small cell lung cancer.

The importance of diversity in research and clinical trials

I want more African Americans to get involved. My passion for advocacy and the focus areas have shifted some, even starting with me wanting to get the voice out that young people could get lung cancer. 

I think we’re already there, but now:

  • How do we get into the communities where minorities are affected more or when cancer is deadlier for some of us?
  • What are the comorbidities?
  • What do we do?
  • How do we go to these clinics and tell people your tumor should be tested?
  • If you go to your local community hospital, you should get the same standard of care as if you’re going over to a university hospital. How do we educate them?
You see yourself as the ultimate advocate for others

Starting with working with students with special needs and being an advocate for small cell and lung cancer, period, I see myself as a fighter for the underdog. You have these voiceless populations. 

At a recent checkup, I was down there talking with a gentleman who was there with his wife. They are a minority couple. She couldn’t handle the information. I said, “No, you need to ask them this, this, this, and this.” 

It’s not like the people at their community hospital were trying to talk to them, like, “Oh, we’re just going to do this.” They were not really explaining anything to them. It sounded like they hadn’t even had tumor genetic testing done, but they were already treating it like they had a mutation. I’m like, “They never told you any of this?” 

I’m becoming irate and enraged because regardless of who you’re talking to, you should have somebody, even a layperson, be able to explain it to anyone who comes into your hospital or clinic.

I have an example related to the follow-up for my breast cancer side effects from the radiation. When I first went to get the scans, the radiologists were like, “Oh, yes, you have dense breast tissue tissue,” which is common in African American women. 

My OB-GYN doctor called me after she got the results. She said, “They might tell you that and tell you to come back in 6 months, but with your history, I would go see a breast surgeon.” Just like that. 

Having a stereotypical mindset that it’s common, too, and you’re young, you’re an African American woman, [and] you have dense breast tissue. Just come back in 6 months, whatever. Not being thorough enough. I would not have known.


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Small Cell Lung Cancer Stories


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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