Nina, diagnosed with stage 4 metastatic breast cancer at 34, shares her experience of navigating the complexities of her illness and advocating for her health. She initially noticed a hardening under her left armpit. A year later, the lump grew and her breast showed signs of dimpling. A mammogram and ultrasound finally revealed an abnormal lump and a biopsy confirmed stage 3 breast cancer. Shortly after, scans showed the cancer had spread to her spine, escalating her diagnosis to stage 4.
Nina quickly shifted into a problem-solving mode, managing her treatment plan, scheduling appointments, and staying organized amidst the overwhelming process. She expressed how emotionally challenging it was to balance her feelings while supporting the emotions of those around her.
Her treatment plan included chemotherapy, followed by a lumpectomy, and radiation on both her breast and spine. She continues to undergo regular infusions and medications to keep the cancer at bay. While the chemotherapy caused a lot of side effects, including hair loss, neuropathy, mouth sores, fatigue, and brain fog, she found strength in adapting to these challenges. Despite needing to remain in treatment indefinitely, her current scans show no evidence of disease.
One of the most challenging aspects of her cancer experience was induced menopause, which affected her physically and emotionally, particularly the loss of her ability to carry children. The lifestyle changes brought about by cancer were also difficult for Nina. However, she found solace in documenting her experience online, helping others understand the realities of living with cancer, especially young women and women of color.
Sharing her story became a way to raise awareness and a form of therapy. Nina’s advice to others is to advocate for themselves and to practice radical acceptance of the life changes that cancer brings. She emphasizes the importance of self-love and reevaluating what truly matters during difficult times.
Name: Nina M.
Diagnosis:
Breast Cancer
Staging:
Stage 4
Symptoms:
Hardening under the armpit
Lump & dimpling in the left breast
Treatments:
Chemotherapy
Surgery: lumpectomy
Radiotherapy
Hormone-blocking medication
Targeted therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content
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.
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.
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.
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.
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.
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.
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.
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 wascertain 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.
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.”
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.
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 for15 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.
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.
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.
I was hoping that because I had quit smoking 14 years prior, I had mitigated my risk.
Donnita
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.
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.
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.
If I had known four years prior when I was first getting sick, would they have immediately diagnosed and figured it out?
Calvin
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.
You don’t need to be a smoker to have lung cancer.
Calvin
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.
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. 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.
National Cancer Institute
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.
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.
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.
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.
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.
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.”
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: 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.
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.
At 37, Samantha was diagnosed with HER2 non-small cell lung cancer. Her symptoms started with a cough and chest pressure, so she went to urgent care. A cancer diagnosis was one thing, but a lung cancer diagnosis with no smoking history was mind-numbing to her. This is Samantha’s story of navigating a lung cancer diagnosis young and discovering a rare biomarker too.
Name: Samantha M.
Age at Diagnosis:
37
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
HER2
Symptoms:
Persistent cough
Chest pressure
Fatigue
Weight loss
Treatments:
Chemotherapy
Immunotherapy
Thank you to Bayer for its support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I went on a women’s trip in March 2024. When I came back from the trip, I developed a cough and noticed some pressure on my chest.
Introduction
I was born in California, raised in Hong Kong and the UK, and went back to the US around 12 years ago. I’m an active, outdoor adventurer. I love hiking, backpacking, camping, and anything to do with nature and being outside.
My husband Justin and I have been married for seven years. He is my absolute world and soulmate. I also have a nine-year-old German Shepherd.
Pre-diagnosis
Initial Symptoms
I went on a women’s trip in March 2024. There were 20 of us going on this adventure together even though I had never met them before. We were going to travel to India for 10 days. Before the trip, everything felt completely normal.
When I came back from the trip, I developed a cough and noticed some pressure on my chest. The air is not the best in India. A lot of people developed a cough, so I didn’t think anything of it, but the chest pressure was bothering me.
Two weeks after my trip, I was still hiking 4 to 5 miles a day, but there was a lot of pressure going on. I went to urgent care where a doctor listened to my chest and said, “Let’s do a chest X-ray to see what’s going on.”
The results showed that my entire left lung was full of fluid and fully collapsed. He said, “You need to go to the emergency room immediately.” I was still very naive then, thinking it was something I contracted from my trip.
They said, ‘We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.’
Diagnosis
Getting a Cancer Diagnosis
I went to the emergency room and they admitted me right away. They put in a chest tube, which was not a pleasant experience, and ended up draining 3 liters of fluid from my lung. They took that off for testing and did multiple CT scans. Even though I was admitted to the hospital, I was getting information about my scans through the apps. My result came through before the doctor even spoke to me. It said multiple lesions on the liver and lungs.
The infectious disease doctor came in and started asking me a ton of questions. They thought I might have tuberculosis because I’d lived and traveled to a lot of foreign countries, so they were very confused and running tons of tests.
Unfortunately, on day three of the hospital admission, they said, “We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.” They couldn’t give me a guarantee at that point, but this was looking like it. They said, “We’re going to discharge you. We’ll wait for confirmation, but we’re lining up an oncology appointment for you right away.” That’s when my world spiraled.
Playing the Waiting Game
We were living in Missoula, Montana, where my husband was stationed. The wait for the general oncologist was two weeks. There was no specialist there. After all, it was such a small town. That period was awful. It was confirmed through the app that I did have cancer, but I had no doctor to bounce anything off or ask questions.
At that point, it didn’t say what stage I was, and not being too familiar, I didn’t know what stage 1 versus stage 4 meant. I had no idea. I didn’t know anything other than I had non-small cell lung cancer.
I was spiraling on Google, which is not your best friend at this time of diagnosis. I figured out I was stage 4 and learned the five-year survival rate. I was doing more digging and came across mutations all this information on mutations.
I was eventually diagnosed with HER2 mutation, which was one I had never heard of.
When I went into that initial oncology visit, I had a list of questions, but the number one was if I could get a biomarker test for genetic mutations. He said, “Absolutely. It was on my list. You’re good because I know a lot of oncologists in these smaller towns are still not aware of these biomarker testing and treat lung cancer when someone could have a targetable mutation.”
I learned a lot about mutations during that two-week waiting period. I was eventually diagnosed with HER2 mutation, which was one I had never heard of. I didn’t come across it on any websites. It was a two-week window of the unknown with the fear and concern that I didn’t have long to live.
At my first oncology appointment in Missoula, he told me that I was stage 4, I was terminal, and had nine months to live. He told me before he even knew what mutation I had. No one should be told how long they have to live like that. It doesn’t help anyone. It set my mind back a long way. It was devastating.
Reaction to the Diagnosis
My husband, who was a 19-year veteran at this point, used to be a combat medic in Iraq and Afghanistan, so he’s seen a lot and I had never seen him cry ever. When I got that diagnosis in Missoula, he went outside the hospital and broke down. That was hard to see and almost harder for me than receiving the news personally. We’re so young. It was heartbreaking because he’s my soulmate. Knowing that I’m not going to be around and be with him when we’re 80 years old is gut-wrenching.
It hit him hard. He’s been an incredible caregiver. He’s been to every single appointment. He now handles the app for me and looks at all of my results. He’s been exceptionally supportive. I couldn’t ask for a better caregiver, but I would say it’s probably had more of an impact on him than on me.
Honestly, I had a breakdown… I thought that was the end of my journey because there was no primary targeted treatment for HER2.
Seeing a Lung Cancer Specialist
My husband said, “We’ll see this oncologist here, but let’s get you to a research hospital. Let’s see if the army will move us.” Within a month, the army approved the move. We were 45 minutes away from the Huntsman Cancer Institute. They have been so supportive and my work has also been so supportive.
I’m very grateful because I know a lot of people are not in that situation, especially those who are young, have cancer, and work full-time jobs. We put our house up for sale and within a month of my diagnosis, we had fully moved to be settled and to see a lung oncologist in Salt Lake City.
I learned to advocate for myself constantly. I was pretty forceful in messaging the Huntsman saying, “I need to get in as soon as possible. The general oncologist referred me. This is their letter.”
I was fortunate to get the best thoracic oncologist at the Huntsman. They looked at my chart and saw the severity of my stage 4 diagnosis. They got me in very quickly and wanted to redo my scans. They did a CT scan and a PET scan, which I hadn’t had at that point. They said, “We’re sending biomarker testing off the blood and also take a sample from Missoula and submit that as a tissue sample.”
They didn’t want to start any treatment until my biomarker test results came back, which took about two weeks. Meanwhile, my lung was continuing to fill up with fluid, so I had to get drained regularly. I was still active and nothing was stopping me. I was hiking at 10,000-foot elevation and I had no issues, but I felt very, very tired.
My biomarker test results came back and said HER2. I had never heard of HER2 in my life. I thought, “What on earth is this? What am I going to do with this?”
Honestly, I had a breakdown because I had been part of groups that talked about EGFR and ALK, all these great drugs, and people doing so well as young people on these targeted therapies. I said, “This is it. I keep on getting hit over and over again with bad luck and this is the final straw.” I thought that was the end of my journey because there was no primary targeted treatment for HER2.
Learning About the HER2 Biomarker
I started researching on Google, which wasn’t the best idea because when you search lung cancer and HER2, it says you do not have a very good prognosis at all and that wasn’t what I wanted to hear. That and not seeing anything about a primary targeted therapy was heartbreaking.
Finding Hope While Learning from Other Patients’ Experiences
I was introduced to someone who is part of an exon 20 group. I spoke to her within 24 hours of knowing that I had HER2 and she spent about an hour explaining everything: what was on the horizon as far as treatment was concerned, what was currently under clinical trials, and all of this hope.
I went from absolute turmoil, thinking this was literally the end, and that I have the worst prognosis to there could actually be some hope here and that changed my entire attitude. A lot of HER2 patients, when they find out about their mutation, aren’t told about the hope. They aren’t told about what’s coming. People have no idea unless they’re educated by other people.
I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.
Treatment
Treatment Options for HER2 Mutation
My oncologist is incredible. He called me right away and said, “Look. This isn’t what I was expecting either, but this is what we have.”He was trying to find silver linings. He said, “You have to come in every three weeks to get treatment, but your mutation works with immunotherapy. Your mutation can work with traditional chemo.” He was giving me some hope and that’s all I needed to hear.
He wasn’t an expert in HER2. I don’t think he has any other HER2 patients, but I was also fortunate because my coworker’s husband’s best friend is a HER2 expert and he’s been an incredible resource who I can text and get information or reassurance. Having those two resources has been invaluable.
My oncologist laid out what chemotherapy and immunotherapy I would be on. He also offered up a clinical trial, which split chemo and immunotherapy separately by a week, instead of combining them for a couple of rounds. He thought that I would be a good candidate.
Meanwhile, the HER2 expert who I was talking to was telling me about an amazing clinical trial for a drug for HER2 that was looking for people who had not been treated yet.My oncologist didn’t know about that trial, so I brought it up with him and he was kind enough to look into the research, look into the statistics, and weigh the options for me.
He said, “At the end of the day, it’s up to you which one you would like to proceed with, but here are my thoughts.” He was leaning towards traditional chemo and immunotherapy because immunotherapy had foundational success in the long run. The clinical trial was still in its early days in knowing what the outcome would be in the long term.
I also didn’t want to wait. Joining a clinical trial in another hospital involved flying, getting scans again, etc. I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.
As weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders.
Response to Treatment
I was responding extremely well and I’m very fortunate that I don’t have that many side effects at all. I have a couple of days of low energy, but other than that, I have been able to live my life, hike, and work.
I spoke to my husband and as weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders.There’s a horrible misconception that chemo and immunotherapy are awful and they don’t do anything. I get very upset about that because it has changed my life and has done amazing things for my body. I haven’t felt this well in years.
Looking back, even though I didn’t have very apparent symptoms, I was tired all the time.I would take naps during the day. I would be exhausted after 10 hours of sleep. I lost five pounds when I’ve never lost weight in my life. There were very subtle signs and if you look at pictures of me, I didn’t look well.
I’m feeling great right now. It’s like a double-edged sword because I have stage 4 cancer,but the chemo and immunotherapy are reducing my cancer burden so much that I feel like normal Samantha again.
Having Hope with a HER2 Biomarker
There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means. We don’t have a targeted therapy right now but that doesn’t mean it’s the end of the line. There are options out there.
Knowing that there are targeted therapies coming out very soon through clinical trials with statistics that show that they work exceptionally well is invaluable.
There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means.
Words of Advice
You see online that if you eat healthy and you exercise, there’s a very low chance you’re going to get cancer and I don’t like that at all. It makes me very angry and very upset because that makes people who are fit and healthy and doing all the right things think that they’re notgoing to be touched by cancer.
People must be aware that cancer does not discriminate. It doesn’t care if you’re fit and healthy. It will be in whoever it wants to be and that’s a fact.
Listen to your body. Be in touch with changes. If you have a lump, if you have a weird cough that has continued for months, if you have a weird mole that you’re not sure about, don’t wait.
If your gut is telling you something is wrong and your doctor says it’s fine and not to worry about it, get a second opinion. Push and be that person and getthe answers you need to get. You have to advocate for yourself.
Special thanks again to Bayer for its support of our independent patient education content. The Patient Story retains full editorial control.
Marina was diagnosed with stage 4 ovarian cancer shortly after giving birth to her daughter. She first experienced symptoms around 10 months postpartum, which included bloating, abdominal pain, heartburn, fatigue, and chest pain. Initially attributing these symptoms to postpartum recovery, she became concerned due to her family history—her mother was diagnosed with ovarian cancer in 2019 and found to have the BRCA1 gene mutation. Genetic testing confirmed that Marina also carried the BRCA1 mutation, putting her at a high risk for ovarian cancer.
Marina’s symptoms, combined with her genetic risk, prompted her to see her primary care provider. Her initial tests were mostly normal, except for an elevated CA-125 score, an indicator often used to detect cancer. An abdominal ultrasound showed a 7.7 cm mass on her right ovary, leading to further imaging, which revealed a 7.1 cm mass on her left ovary, malignant ascites, peritoneal tumors, and a 1.4 cm lesion on her spleen. She was quickly referred to a gynecological oncologist and informed that, unless she started immediate treatment, she had only six months to live.
Given the extensive cancer spread, Marina’s oncologist recommended starting chemotherapy before surgery to shrink the tumors. Marina underwent four cycles of chemotherapy, which successfully reduced some masses, especially those in her chest, allowing her to proceed with a planned radical hysterectomy and splenectomy. Her oncologist also considered HIPEC (hyperthermic intraperitoneal chemotherapy) for her case due to its potential benefits for her age and condition.
During chemotherapy, Marina experienced both physical and emotional challenges, including an allergic reaction and difficulty sleeping, but she found some relief when her treatment plan was adjusted. Marina was optimistic about her future, especially after consulting with a second gynecological oncologist, who offered a more hopeful outlook and mentioned the possibility of achieving no evidence of disease (NED).
After her scheduled surgery, Marina will continue chemotherapy and possibly begin a maintenance treatment with PARP inhibitors, drugs that have shown promising results in BRCA1 and BRCA2 mutation carriers. Despite the uncertainty and challenges of her diagnosis, Marina remains committed to her family, especially her young daughter, and is determined to fight for as much time with her as possible.
Nolan’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Nolan was diagnosed with diffuse large B-cell lymphoma at 23, specifically a T-cell-rich subtype. Then a full-time social work student, he first noticed symptoms in late 2015, including persistent fatigue, flu-like symptoms without a fever, and a swollen lymph node under his arm. His primary care physician referred him to an oncologist after initial tests. A PET scan revealed widespread disease, indicating a more aggressive cancer than initially suspected. The diagnosis was confirmed via biopsy.
Nolan began treatment immediately due to the aggressive nature of his cancer, starting with R-EPOCH, a more intensive regimen than the standard R-CHOP, tailored to his condition. The first infusion was particularly harsh due to the high tumor burden, but subsequent treatments were more manageable. He underwent about four to five months of chemotherapy, which put him into remission by the fall of 2016. However, the cancer returned a year later, leading to salvage therapy with RICE and eventually a bone marrow transplant. The transplant was challenging, involving a severe reaction to one of the drugs, prolonged hospitalization, and intense fatigue.
The mental toll of his diagnosis and treatments was significant. While undergoing treatment, Nolan was focused on survival and had a structured routine with medical appointments and procedures. However, the period after finishing treatment was particularly difficult, as he struggled with the abrupt transition back to normal life and the fear of recurrence. The recurrence of his cancer further intensified these feelings, leading to a deep sense of uncertainty about his future.
Nolan credits his mother, a former nurse at a leukemia and lymphoma transplant center, as his primary support system. She was a crucial advocate throughout his treatment. Friends and family were supportive but sometimes distant, which he attributes partly to his reluctance to talk about his experience.
After several years of remission and moving around the country, Nolan returned to school, deciding to pursue a career in social work to help others facing serious illnesses. He reflects on how his diagnosis has profoundly affected his perspective on life. While the experience brought grief and a heightened awareness of mortality, it also instilled in him a deeper appreciation for the beauty in life’s fleeting moments. Now, Nolan feels more grounded and is cautiously optimistic about his future.
Name: Nolan W.
Age at Diagnosis:
23
Diagnosis:
T-cell/histiocyte rich large B-cell lymphoma (THRLBCL)
Non-GCB (Germinal center B-cell)
Staging:
Stage 4
Symptoms:
Debilitating fatigue
Flu-like symptoms without a fever
Swollen lymph node under the left arm
Treatment:
Chemotherapy: R-EPOCH & RICE
Bone marrow transplant
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Amanda’s initial symptom of her stage 4 Hodgkin lymphoma was intense itching, which emerged during a ski trip in her junior year in high school. The itching persisted and worsened, leading her to seek medical advice. A dermatologist, unable to find any external cause, referred her to a pediatrician, who suspected scabies. After undergoing treatment, Amanda saw no improvement. Further tests indicated she was anemic but despite taking iron supplements, her symptoms worsened. She eventually developed more serious symptoms, including a fever, swollen lymph nodes, severe fatigue, and back pain.
Her worsening condition led her to see multiple doctors, but no one could pinpoint the cause of her symptoms. After researching her symptoms online, Amanda was convinced she had Hodgkin lymphoma and repeatedly suggested the possibility to her doctors, but they remained skeptical. Finally, after months of seeking answers, an infectious disease doctor recommended a lymph node biopsy, which confirmed Amanda’s suspicion: she had Hodgkin lymphoma.
By the time of her diagnosis, the cancer had spread beyond her lymph nodes to her liver, spleen, and shoulder, though fortunately, it had not reached her bone marrow. Amanda was diagnosed with stage 4 Hodgkin lymphoma and received A+AVD chemotherapy. The treatment caused significant side effects, including hair loss and severe bone pain, which was especially difficult for her as a young patient.
Despite these challenges, Amanda maintained a sense of autonomy and positivity. She found solace in small acts, like spending time with friends and family. Four days before Christmas of her senior year, she learned she was in remission.
Although remission brought relief, Amanda struggled with survivor’s guilt, especially as she witnessed others with similar diagnoses who weren’t as fortunate. She also found it challenging to transition to college life after treatment, dealing with both physical changes and emotional trauma. Amanda continues to advocate for mental health and the importance of finding joy in small moments during difficult times.
In retrospect, Amanda stresses the importance of holding onto autonomy and maintaining a positive mental outlook, no matter how challenging the circumstances. The Patient Story has been a source of support, as she found comfort in reading stories of others who had walked a similar path.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Courtney’s Stage 3C High-Grade Serous Ovarian Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Courtney was diagnosed with stage 3C high-grade serous carcinoma (ovarian cancer) in June 2023. Her diagnosis came as a shock. Initially, she noticed a change in her body composition and later began experiencing unusual fatigue, having to take frequent naps, random abdominal pain, and digestive issues like constipation.
These symptoms gradually intensified, leading her to consult a doctor. However, it wasn’t until a CT scan revealed significant masses that ovarian cancer was suspected. Even then, the diagnosis was a surprise, as neither Courtney nor her doctors initially considered it a possibility. The confirmation came after a biopsy, and she quickly began treatment.
Courtney underwent six rounds of chemotherapy with carboplatin and paclitaxel, which led to a rapid reduction in her tumor markers. Her CA125 levels dropped dramatically after one treatment. Surgery followed after the third chemotherapy cycle, during which her reproductive organs were removed. Fortunately, the chemotherapy had shrunk the tumors enough to avoid more extensive surgery, such as removing part of her colon.
Throughout treatment, Courtney dealt with typical chemotherapy side effects like bone pain, exhaustion, and brain fog. However, she was fortunate not to experience significant nausea, a common issue for many patients. Post-treatment, she encountered several complications, including pneumonia, shingles, and a new diagnosis of myasthenia gravis, an autoimmune disorder likely triggered by her weakened immune system.
Emotionally, Courtney finds herself grappling with the aftermath of her diagnosis and treatment. While she’s physically improving, she is mentally preparing for the possibility of recurrence and the impact on her family. Her faith plays a crucial role in her coping process, though she acknowledges the challenges in maintaining her belief during such a difficult time.
Courtney emphasizes the importance of early symptom recognition and advocates for more awareness of ovarian cancer among women and healthcare providers. She also stresses the need for physical health and self-care, suggesting that paying closer attention to one’s body could lead to earlier detection of serious conditions. Despite the hardships, Courtney feels a sense of power and clarity, seeing her experience as a gift of perspective.
Jessica’s Stage 4 BRAF Mutation Colon Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Jessica was diagnosed with stage 4 colon cancer at 26. Four months before her diagnosis, she began experiencing intense episodes of stomach cramps, diarrhea, and vomiting, which would last for 48 hours. She initially thought she had a gluten intolerance and visited emergency doctors several times. They misdiagnosed her with gastroenteritis and prescribed ineffective medication
Frustrated by the recurring symptoms, Jessica pushed for blood tests, suspecting something more serious. During a particularly severe episode of stomach cramps, she called an ambulance and was taken to the hospital. Blood tests revealed that she was severely anemic, requiring multiple blood transfusions. A subsequent CT scan suggested the presence of a tumor in her colon. Despite some reluctance from doctors to comment on the findings, a colonoscopy confirmed the diagnosis.
Jessica described the colonoscopy as a traumatic experience since she was awake during the procedure and could sense something was wrong. Afterward, she was told she had a tumor blocking part of her colon, causing her digestive issues. Although it wasn’t immediately confirmed as cancerous, Jessica underwent surgery to remove half of her colon (a hemicolectomy), during which 36 lymph nodes were tested. The results showed that the cancer had spread, confirming stage 4 colon cancer.
Jessica faced a roller coaster of emotions when told she had the BRAF genetic mutation, which is resistant to chemotherapy. However, a post-surgical PET scan revealed no remaining cancer in her body, which was a miracle. Despite the initial bleak prognosis, she completed six months of chemotherapy and has been in remission since November 2022.
Throughout chemotherapy, Jessica experienced manageable side effects, including fatigue and neuropathy. Mentally, she remained optimistic, having come to terms with living a fulfilling life regardless of her prognosis. Her treatment gave her a new perspective on life, changing her outlook on relationships and personal boundaries. She acknowledged grieving her old self but ultimately embraced her transformed identity.
Jessica’s message to others is that they are stronger than they realize. She encourages people to see difficult experiences as temporary and reminds them that life can look vastly different in a year, offering opportunities for growth and new perspectives.
Name: Jessica T.
Diagnosis:
Colon Cancer
Staging:
Stage 4
Mutation:
BRAF
Symptoms:
Severe stomach cramps
Diarrhea
Vomiting
Anemia (discovered later)
Treatments:
Surgery: hemicolectomy (removal of half the colon)
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Paul was diagnosed with stage 3 rectal cancer in early 2024. He had initially experienced unusual bowel-related symptoms, such as frequent bowel movements and loose stools, for over a year before his diagnosis. During a routine physical in late 2023, he brought up his concerns to his doctor, who advised monitoring the symptoms, suspecting inflammation or a dietary issue. Over the next few months, the symptoms persisted and eventually worsened, with the appearance of blood in his stool. This led to a referral to a gastroenterologist, who recommended a colonoscopy, ultimately revealing a sizable tumor.
Paul admits he might have downplayed his symptoms had it not been for his wife, who urged him to seek further medical evaluation. Despite being young and in good health, Paul and his doctors initially considered alternative diagnoses like ulcerative colitis, Crohn’s disease, or diverticulitis, conditions more common in people his age. However, his intuition and his wife’s insistence that something more serious was at play led to the colonoscopy, where the tumor was discovered.
The diagnosis was a shock to Paul and his wife, especially since they had recently welcomed their first child and were enjoying other life milestones. The colonoscopy revealed a tumor consistent with rectal cancer and further tests, including a biopsy, confirmed it was malignant. Additional imaging, such as a CT scan and an MRI, revealed that the cancer had spread to nearby lymph nodes, leading to a stage 3 diagnosis.
Paul began his treatment plan, which included chemotherapy, radiation, and eventual surgery. His medical team opted for CAPOX chemotherapy and planned for radiation therapy to follow. The goal was to shrink the tumor and affected lymph nodes to make surgical resection more effective. Radiation was strategically moved closer to the surgery timeline to avoid excessive scar tissue formation.
Paul is also passionate about raising awareness, particularly among younger people, about the rising rates of colorectal cancer. Encouraged by his wife, he started sharing his experience on social media where his videos discussing symptoms and the importance of early detection reached hundreds of thousands of viewers. He emphasizes the importance of being one’s own health advocate, urging others not to ignore symptoms or delay crucial medical tests like colonoscopies. The high cost of these procedures for those under 45 prompted Klug to advocate for better insurance coverage, as the financial barrier often leads to dangerous delays in diagnosis.
Despite the challenges, Paul remains optimistic and is determined to use his platform to spread awareness, especially among younger individuals, about the importance of recognizing cancer symptoms early.
Name: Paul K.
Diagnosis:
Rectal Cancer
Staging:
Stage 3
Symptoms:
Frequent bowel movements
Loose stools
Blood spotting in stool
Treatments:
Chemotherapy: CAPOX (capecitabine and oxaliplatin)
Radiation
Upcoming surgery: colon resection
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Partner with Your Oncologist for Better Multiple Myeloma Care
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Multiple myeloma patient advocate Cyndie Dunlap and her doctor Dr. James Berenson, president and medical director of the Berenson Cancer Center, discuss what makes their patient-doctor teamwork truly effective.
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Partner with Your Oncologist for Better Multiple Myeloma Care
Hosted by The Patient Story
Join myeloma patient advocate Cyndie Dunlap and her doctor, Dr. James Berenson as they discuss what makes their patient-doctor teamwork truly effective.
Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in multiple myeloma care. Hear first-hand experiences of navigating chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one during the treatment process. Explore how teamwork fosters a supportive environment for long-term care.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Sanofi for supporting our patient education program. The Patient Story retains full editorial control over all content
Tiffany Drummond: I’m an advocate who has worked in cancer research for 20 years, but more importantly, I became a care partner advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me on a quest to find out as much as I could to help with her care. Information wasn’t easy to find, that’s why we at The Patient Story put on programs to help people navigate life after diagnosis.
This program is hosted by The Patient Story. Our multi-platform organization aims to help people navigate life before, at, and after diagnosis in human terms through empowering patient stories and educational discussions focused on how patients, caregivers, and their partners can best communicate with their doctors as they go from diagnosis through treatment with myeloma.
We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists, to help you communicate with members of your healthcare team and provide information about treatment options.
We want to thank our sponsor, Sanofi, for its support, which helps us host these programs for free. The Patient Story retains full editorial control over all content. Please keep in mind this program is not a substitute for medical advice.
I have two exceptional guests. Cyndie, a multiple myeloma patient, and her wonderful doctor, Dr. James Berenson, a hematologist-oncologist at the Berenson Cancer Center in West Hollywood, California, and the president and CEO of the Institute of Myeloma and Bone Cancer Research.
Cyndie’s Multiple Myeloma Story
Initial Symptoms
Tiffany: Cyndie, what were your symptoms leading up to seeing a hematologist-oncologist?
Cyndie Dunlap: I was having a little bit of back pain, but I was prompted when I got a routine DEXA scan and was told to take Fosamax (alendronate). I decided to see a bone specialist and instead of going on Fosamax, the bone specialist found myeloma.
Tiffany: Take me through that. What made you decide to talk to someone else?
Cyndie: My first career was as a critical care dietician, so I had some hospital experience and I also had a sister who had a lifelong illness. I realized to trust my gut. I knew that I wanted to see a specialist.
Finding the Berenson Cancer Center
Tiffany: How did you get to the Berenson Cancer Center, which is in a whole other state from where you live?
Cyndie: I started at a top 10 cancer hospital. I was diagnosed at the beginning of the pandemic, so I didn’t have an option. I did the standard treatment that every myeloma patient gets put on and had a transplant.
I always knew that I would get a second opinion when things opened up. I started researching and Dr. Berenson’s name kept coming up over and over and over again, so I decided he was where I was going to start.
The Berenson team absolutely fought for my treatment to get covered. They’re very skilled in navigating insurance.
Cyndie Dunlap
Insurance Concerns
Tiffany: Was it an issue having to go to a different state? Did that affect your insurance at all or was it more seamless for you?
Cyndie: It was fairly seamless. My insurance is national and Dr. Berenson accepts different kinds of insurance, so that was not an issue at all. I’ve had a great coordinator in case I had any issues.
Not that you don’t have to fight. The Berenson team absolutely fought for my treatment to get covered. They’re very skilled in navigating insurance as well, so I appreciate the teamwork on that end.
What is Multiple Myeloma?
Tiffany: Dr. Berenson, can you explain in basic terms what multiple myeloma is?
Dr. James Berenson: Multiple myeloma is a form of blood cancer, but it’s bone marrow-based and it involves a type of white cell called a plasma cell. The job of a plasma cell is to make antibodies. Normally, one plasma cell makes one antibody. About a half percent of the cells in your bone marrow are plasma cells and each one makes a different antibody.
What happens in myeloma is it starts with one cell that keeps dividing and dividing. Eventually, there are billions of these cells in the bone marrow, so the protein in the blood—the antibody—sticks out like a sore thumb and tells the patient there’s a marker for myeloma.
Myeloma can cause bone destruction, blood count problems because it’s in the bone where you make all your blood cells, kidney problems, or high calcium from the calcium leaching out of your bones. However, myeloma patients are doing much better because of all the new treatments.
Tiffany: It seems very complex as opposed to a solid tumor, so thank you so much for explaining that.
The Initial Consultation
Tiffany: You get patients pretty much from all over the country. How do you approach your patients? In Cyndie’s instance when she already saw someone, what was your initial consultation like? What general questions are asked and what general information do you give at the initial consult when you meet a patient?
Dr. Berenson: I saw a new patient who came in from a kidney doctor because his kidneys were a little off. The big thing here is to make sure that you take the whole patient into account. A lot of things are blamed on myeloma. A patient who’s anemic could probably be iron deficient. Kidneys don’t quite work right, but that may be from diabetes and not myeloma.
I’ve seen this all the time. What happens many times is patients have a blinder-on type of doctor that blames everything on myeloma, they throw everything but the kitchen sink, and the patient just has iron deficiency. He doesn’t even need treatment for myeloma. They have kidney disease maybe because they took too much medication, from diabetes, or high blood pressure. When you see a patient, you have to think about the whole patient and not just the myeloma.
Take into account: what are their goals for treatment? How old are they? What’s their quality of life? What are their expectations? Do they want to travel? Do they want to stay local? All these things come into account. It’s not just myeloma.
He looked at me as a whole patient and explained things incredibly thoroughly. I’d had myeloma for two years, but he described the plan that he wanted to put me on and why he wanted to and it’s been amazing.
Cyndie Dunlap
Getting a Second Opinion
Tiffany: Cyndie, when you wanted a second opinion, you knew you wanted to go to Dr. Berenson’s cancer center where you’re getting treatment. How did that look for you? Did you already have in mind what your quality of life needed to be in order for you to sustain yourself? Or did you say you want to see what Dr. Berenson had to say first and go from there?
Cyndie: Withmy previous experience, I was put through some pretty hardcore treatment. It was very fear-based and not quite as helpful. I’m a very positive person, but that was probably the biggest difference when I went into Dr. Berenson’s office. We discussed. He looked at me as a whole patient and explained things incredibly thoroughly. I’d had myeloma for two years, but he described the plan that he wanted to put me on and why he wanted to and it’s been amazing.
Honestly, I’m doing things that I didn’t think I’d be able to do and I have no hesitancy doing them. One of the things that I appreciate is that I am youngish to have this disease and I live a very carefree life. I have virtually no side effects from the treatment I’m on. He had me in complete remission within, I would say, two months of starting this treatment and I had not achieved that after all the hardcore chemo.
One time, I asked him if I could go down on steroids and we discussed it and what my goals were. Ultimately, I trust his judgment. He’s one of, if not the best, in the world, but I appreciate that he takes the time to explain why he does or does not want to do something.
The goal here is to give patients a long life that they can have with great quality.
Dr. James Berenson
Novel Approaches to Care
Tiffany: Dr. Berenson, you have this novel approach to the way you do care. Do you find that most of your patients are open to that? How do you approach that when the actual treatment plan isn’t something that is a standard?
Dr. Berenson: I have the outcome data now to say we’re doing well. Our patients are living longer. As my daughter said, “They’re living better and they’re living longer.” When you walk into our clinic, you don’t even know anybody has myeloma or is sick because we don’t make them sick with treatment and yet they do well. There’s nothing better.
What Cyndie’s getting isn’t approved as a single agent, but we’ve published it works great. There’s another antibody in the company that makes it and another drug said you have to use them together. My 90-year-old, who’s been in complete remission for five years, would disagree. I won’t say everything works for every patient because it doesn’t. I’d rather start slowly and give drugs in a way that people don’t get sick.
Most oncologists don’t understand that the goal here is to give patients a long life that they can have with great quality. If people are living with better quality, they’re going to live longer and that’s shown in the results from our patients over the last 20 years.
Part of the story is our hands-on approach. Everybody has my cellphone number… We respond immediately and that makes a huge difference in outcomes.
Dr. James Berenson
Tiffany: You both are the epitome of a patient-physician partnership. You’re communicating with each other and very trusting of each other. You know that this plan is what works for you. Like you said, it doesn’t work for everyone, but your data is clearly showing that, which is promising.
Dr. Berenson: Part of the story is our hands-on approach. Everybody has my cellphone number. I don’t care when they call me, day or night. It doesn’t bother me. My daughter had a problem that a GI doctor helped with and we were all over it within an hour or two. That’s how I respond to my patients.
Cyndie: In fact, I had a GI problem and Dr. Berenson had me on the phone with the same GI doctor.
Dr. Berenson: Being available is such a big thing. I had a patient who came in with neck pain and had cord compression lower down. I got his MRI that same afternoon. Thank God he didn’t have anything on his neck, but if he did, we would have been all over it that afternoon with the surgeon and the radiotherapist. We respond immediately and that makes a huge difference in outcomes. It’s not just throwing the right brews and cocktails together of drugs, but also being available for all these other things and trying to sort them out so they don’t become major problems for the patient.
When you talk to him, you realize that he has an understanding of this disease like no one else.
Cyndie Dunlap
Traveling for Your Care
Tiffany: Cyndie, how often do you have to travel to see Dr. Berenson and what does that look like? Do you have a local healthcare team that communicates with him and shares your medical information? How does that work?
Cyndie: My treatment is every two weeks. Up until recently, I traveled every 4 to 10 days. We’ve created a special arrangement where Dr. Berenson is my primary and does all of my oncology and myeloma blood work. I receive one treatment a month locally and then I go to California for a week once every four weeks. I appreciate that he’s willing to talk to my local oncologist if I need to, but honestly, he has me in such good shape.
If anything changed and, for some reason, I needed a different treatment, I would go to California more frequently. It’s a hands-on approach. When you talk to him, you realize that he has an understanding of this disease like no one else. My kids and I all want me in his care.
Tiffany: Dr. Berenson, can you talk to me about monitoring from afar? Has the pandemic even changed how you do that? Is telehealth part of your care now? What’s that like for you when you have patients who don’t live in your local area?
Dr. Berenson: I had a consult with a guy from another country and his doctor’s the head of their myeloma unit. I wanted to give a drug that Cyndie’s on with another one because he has a very specific genetic marker. Sometimes, it’s hard to deal with other countries because they don’t have approvals and these people can’t get drugs. It’s very frustrating. I do telehealth with people all over the country and around the world, and I’m aghast at some of the care.
I have a patient in Nelson, British Columbia, who’s getting his care for his myeloma from a primary care doctor. There’s an incredible myeloma doctor I know well in Calgary, 150 miles east, but he can’t go there because it’s outside the province. He’s got a marker in which he would do beautifully on what Cyndie’s on, but he can’t go. This is frustrating for me because you know what to do, but your hands are tied.
I appreciate the way that he practices medicine and the thought behind how he approaches his patients in the clinic is filled with hope.
Cyndie Dunlap
Why is Your Patient-Physician Relationship Successful?
Tiffany: Your relationship is one that a lot of patients want to have with their physician. Cyndie, what makes your relationship with Dr. Berenson so successful?
Cyndie: He’s a very unique physician as well as an outstanding human being. There was another patient that I know who said this is a passion and not just his profession. I do believe that I am positive because I had a different experience. I appreciate the way that he practices medicine and the thought behind how he approaches his patients in the clinic is filled with hope. I appreciate the way that he treats me holistically. It’s not fear-based. I’m positive and I respond to that. I’m not alone in this feeling about him. You could survey his patients and I think you’d get similar responses over and over again.
What Makes Your Patient Relationships Special?
Tiffany: Dr. Berenson, what makes you so successful that your patients travel hundreds and thousands of miles to see you and want to keep coming back? What do you think it is that makes that relationship so special where they feel that they’re getting the best care?
Dr. Berenson: We have the best survival rate in the entire world by far. We’ll be publishing that, so I can’t say what it is right now. Let’s not let facts get in the way of opinion. If I were a patient, show me the data. Let me look at it. Let me peruse it. That will not tell you the quality of life data, but I always say if you’re feeling better, you’re probably living longer.
I don’t think very many oncologists give their cellphone numbers, but I do. Everybody has it. I don’t care when you call me. I had a patient who was worried that she had dents in her skull, which turned out to be nothing. But she was freaking out, so I said, “Come in tomorrow morning. I’ll get X-rays in the clinic.” Then I can reassure her that she’s fine. You don’t want that anxiety. You want to get rid of it with reassurance.
For example, like what happened with Cyndie, I got her to the guy who knows. I don’t know about her gut, but I know the guy to deal with it. Figure out a triage. Figure out what you don’t know. Don’t pretend you know everything. Know your limitations. All of that comes into play, but the big thing is availability, willingness to think outside the box, and not being afraid to try things.
I use drugs in more combinations to treat myeloma than any oncologist in the world. I’m not afraid. Sometimes you blow it and it doesn’t work, but I’m also quick to respond. We have a new marker that’s allowing us to respond. You can respond quickly if something’s going awry and that’s cool. I have a patient who’s the first person in the world going on a trial using that marker to make a clinical decision, so we’re very excited about that.
I’m more interested in trying to figure out how to use fewer drugs so we have less cost to the system and fewer side effects for patients.
Dr. James Berenson
Multiple Myeloma Clinical Trials
Tiffany: Dr. Berenson, do you conduct clinical trials at the Berenson Cancer Center or do you keep it more investigator-initiated where you’re developing it yourself?
Dr. Berenson: We try to spread the love. Sometimes, we start on a whim and we’ll try a drug that may be approved for something else, repurpose it, we’ll get an activity, and then we’ll go to the company to spread the love and do it with other sites around the country. Sometimes we’ll piggyback on larger drug company-sponsored trials.
I’m more interested in trying to figure out how to use fewer drugs so we have less cost to the system and fewer side effects for patients. Perhaps, we’re going to be able to intermittently treat with some of the newer drugs and the better markers we’re going to have to track myeloma.
I tell people that no matter where they are in the country, they should at least try to get a consultation from Dr. Berenson before they start treatment.
Cyndie Dunlap
Key Takeaways
Tiffany: This conversation has been great. It’s going to be evident to anyone how this patient-partner relationship works. Cyndie, if you could advise someone who may be newly diagnosed or even relapsed/refractory, what is something that you wish you knew?
Cyndie: I would have asked my initial oncologist: what are the other options? It was very directly said to me that my treatment was the only way to go. I tell people that no matter where they are in the country, they should at least try to get a consultation from Dr. Berenson before they start treatment. If not for the pandemic, that’s the way I would have gone. I wish that I had started with him. It would have saved me from getting a transplant and all kinds of chemo.
Tiffany: I’m pretty sure there are some people out there who feel that they’re stuck in one place. There’s no one replacing Dr. Berenson, but there may be someone close to him in your local community. Find that person if you can’t get to Dr. Berenson.
We shouldn’t allow this hands-off and less involved approach to occur… To me, it’s individualized care and getting to know everything about your patient and their life. Only then can you personalize care.
Dr. James Berenson
Dr. Berenson: You have to try to push what people should be doing. What should be the norm? The norm should be availability. The norm should be that you touch a patient and examine them. The norm should be that you spend enough time to find out whether their eyes, ears, nose, throat or something else is going on. That should be what we allow.
We shouldn’t allow this hands-off and less involved approach to occur. People are talking about personalized medicine. I find it rather ironic at a time when medicine is so much more depersonalized and I don’t think that’s the idea of personalization. To me, it’s individualized care and getting to know everything about your patient and their life. Only then can you personalize care.
Tiffany: Especially for my loved one that I was caregiving for, their care team became our family. I looked at them like I would look at family and wanted the best for them like I would family as well.
Conclusion
Tiffany: Thank you, Cyndie and Dr. Berenson, for a great discussion. Dr. Berenson is such a colorful character and brings humanization to cancer that we at The Patient Story continuously strive for. It is important to be empowered so that you and your caregivers can make informed decisions about your care.
Thanks again to our sponsor, Sanofi, for its support of our independent patient program and to our partner The Leukemia & Lymphoma Society. Check out the links on their website and also check out their information resource center, which provides free one-on-one support. Until next time.
