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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.


Johnson & Johnson - J&J

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



How I Learned I Had Lung Cancer

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

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

Introduction

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

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

Amanda Bialack-Stewart
Ashley

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

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

Amanda

Initial Symptoms

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

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

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

Ashley
Amanda

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

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

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

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

Ashley

Hearing the Words “You Have Cancer”

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

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

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

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

Ashley
Amanda

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

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

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

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

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

Amanda

Living with Stage 4 Lung Cancer

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

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

Ashley
Amanda

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

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

There is HOPE with This Disease

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

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

Ashley
Amanda

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

Amanda

The Power of Knowledge: Biomarkers

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

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

Introduction

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

Jill F.
Luna O.

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

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

Jill

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

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

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

Jill F.
Luna O.

Getting the Official Diagnosis

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

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

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

Luna

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

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

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

Jill F.
Luna O.

Biomarker Testing

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

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

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

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

Jill

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

Jill F.
Jill F.

Living with Lung Cancer with Hope

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

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

Luna

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

Jill F.
Luna O.

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


The Many Faces of Lung Cancer

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

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 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 HER2-Mutant Immunotherapy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Treatments

Samantha’s Stage 4 HER2 Non-Small Cell Lung Cancer Story

Samantha’s Stage 4 HER2-Lung Cancer Story

Interviewed by: Stephanie Chuang
Edited by: Katrina Villareal

Samantha M. feature profile

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
Samantha M.

Bayer

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.

Samantha M.
Samantha M.

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.

Samantha M.
Samantha M.
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.

Samantha M.
Samantha M.
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.”

Samantha M.
Samantha M.

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.

Samantha M.
Samantha M.
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.

Samantha M.
Samantha M.

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.

Samantha M.
Samantha M.

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 not going 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 get the answers you need to get. You have to advocate for yourself.

Samantha M.

Bayer

Special thanks again to Bayer for its support of our independent patient education content. The Patient Story retains full editorial control.


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More 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
BRCA1 Chemotherapy Hysterectomy Ovarian Patient Stories Splenectomy Steroids Surgery Treatments

Marina’s Stage 4 BRCA1+ Ovarian Cancer Story

Marina’s Stage 4 BRCA1+ Ovarian Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Marina A. feature profile

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.


  • Name: Marina A.
  • Diagnosis:
    • Ovarian Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • BRCA1
  • Symptoms:
    • Bloating
    • Abdominal pain
    • Heartburn
    • Fatigue
    • Chest pain
  • Treatments:
    • Chemotherapy: pre- & post-surgery
    • Upcoming surgeries: radical hysterectomy & splenectomy
    • Possible HIPEC
    • Maintenance treatment with PARP inhibitors (future plan)
Marina A.
Marina A.
Marina A.
Marina A.
Marina A.
Marina A.
Marina A.

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


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More Metastatic Ovarian Cancer Stories


Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B



Symptoms: Stomach pain, constipation, lump on the right side above pubic area

Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...

Susan R., High-Grade Serous Ovarian Cancer, Stage 4



Symptoms: Pulling sensation when emptying bladder, abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Jodi S., Epithelial Ovarian Cancer, Stage 4



Symptoms: Extreme bloating, extremely tight skin, changes in digestive tract, significant pelvic pain, sharp-shooting pains down inner thighs, extreme fatigue

Treatments: Chemotherapy (pre- & post-surgery), surgery (hysterectomy)
...

Categories
Bone marrow transplant Chemotherapy Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories R-EPOCH R-ICE Treatments

Nolan’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story

Nolan’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Nolan W. feature profile

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 for treatment decisions.


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More DLBCL Stories

Tony W. feature profile

Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)

Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatments: R-CHOP chemotherapy, CAR T-cell therapy
Stephanie Chuang

Stephanie Chuang



Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.

Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
Sammie shares her non-hodgkin's lymphoma story
Sammie F., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy
Robyn S. profile

Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



Relapse Symptoms Swelling in leg, leg edema Treatment: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)

Categories
A+AVD AYA Chemotherapy Classical Hodgkin Lymphoma Metastatic Neulasta Patient Stories Treatments

Amanda’s Stage 4 Hodgkin’s Lymphoma Story

Amanda’s Stage 4 Hodgkin’s Lymphoma Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Amanda P. feature profile

Amanda’s initial symptom of 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.


  • Name: Amanda P.
  • Diagnosis:
    • Hodgkin’s Lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Intense itching (no rash)
    • Bruising from scratching
    • Fever
    • Swollen lymph node near the hip
    • Severe fatigue
    • Back pain
    • Pallor
  • Treatments:
    • Chemotherapy: A+AVD (brentuximab vedotin, doxorubicin, vinblastine, dacarbazine)
    • Neulasta (pegfilgrastim)
Amanda P.
Amanda P.
Amanda P.
Amanda P.
Amanda P.
Amanda P.
Amanda P.

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


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More Metastatic Hodgkin Lymphoma Stories

Amanda P. feature profile

Amanda P., Hodgkin’s, Stage 4



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

...

CC W., Hodgkin’s, Stage 4



Symptoms: Achiness, extreme fatigue, reactive rash on chest & neck, chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
...

Lia S., Nodular Sclerosis, Stage 4A



Symptom: Extreme lower back pain

Treatment: ABVD chemotherapy
...

Categories
Carboplatin Chemotherapy High-Grade Serous Interval Debulking Lynparza (olaparib) Ovarian PARP Inhibitor Patient Stories Surgery Taxol (paclitaxel) Thoracoscopic Thymectomy Treatments

Courtney’s Stage 3C High-Grade Serous Ovarian Cancer Story

Courtney’s Stage 3C High-Grade Serous Ovarian Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Courtney H. feature profile

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.


  • Name: Courtney H.
  • Diagnosis:
    • Ovarian cancer
    • High-grade serous carcinoma
    • BRCA1+
  • Staging:
    • 3C
  • Symptoms:
    • Noticeable body changes
    • Fatigue and frequent napping
    • Random abdominal pain
    • Severe constipation
    • Loss of appetite
    • Weight loss
  • Treatments:
    • Chemotherapy: carboplatin & paclitaxel
    • Surgeries: interval debulking, thoracoscopic thymectomy
    • PARP inhibitor: olaparib
Courtney H.
Courtney H.
Courtney H.
Courtney H.
Courtney H.

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


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More High-Grade Serous Carcinoma Stories


Randalynn V., High-Grade Serous Carcinoma, Stage 1C



Symptoms: Pulling sensation when emptying bladder; abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Shirley P., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Symptoms: Pulling sensation when emptying bladder; abdominal pain
Treatments: Chemotherapy (carboplatin & paclitaxel), de-bulking surgery, PARP inhibitors
...

Suzann B., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Symptoms: Inability to urinate
Treatments: Chemotherapy, de-bulking surgery, total hysterectomy
...

Susan R., High-Grade Serous Ovarian Cancer, Stage 4



Symptoms: Pulling sensation when emptying bladder, abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Sara I., High-Grade Serous & Clear Cell Carcinoma, Stage 3A



Symptoms: Random sharp pains, unrelated scan showed ovarian cyst
Treatments: Debulking surgery, chemotherapy (carboplatin & paclitaxel), PARP inhibitors (clinical trial)
...

Categories
Chemotherapy Colon Colorectal dexamethasone Hemicolectomy Metastatic Patient Stories Steroids Surgery Treatments

Jessica’s Stage 4 BRAF Mutation Colon Cancer Story

Jessica’s Stage 4 BRAF Mutation Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Jessica T. feature profile

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
Jessica T.
Jessica T.
Jessica T.
Jessica T.
Jessica T.
Jessica T.
Jessica T.

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


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More Metastatic Colorectal Cancer Stories

 
Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatments: Chemotherapy (oxaliplatin, 5-fluorouracil, and irinotecan)
Steve S., Colorectal Cancer, Stage 4

Symptoms: Blood in stool, changes in bowel habits, feeling gassy/bloated

Treatments: Surgery to remove tumor, chemotherapy (FOLFIRI), monoclonal antibody (panitumumab), liver transplant
Jessica T. feature profile

Jessica T., Colon Cancer, Stage 4, BRAF Mutation



Symptoms: Severe stomach cramps, diarrhea, vomiting, anemia (discovered later)

Treatments: Surgery (hemicolectomy), chemotherapy


Categories
AYA CAPOX (capecitabine, oxaliplatin) Chemotherapy Colectomy Colorectal Patient Stories Radiation Therapy Rectal Surgery Treatments

Paul’s Stage 3 Rectal Cancer Story

Paul’s Stage 3 Rectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Paul K. feature profile

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
Paul K.
Paul K.
Paul K.
Paul K.
Paul K.
Paul K.
Paul K.

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


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More Rectal Cancer Stories


Joanna H., Rectal Cancer, Stage 3



Symptoms: Rectal bleeding, bloating, stomach aches



Treatments: Chemotherapy (FOLFOX), radiation
Catherine

Catherine P., Rectal Cancer, Stage 3



Symptoms: Rectal bleeding, constipation, bloating
Treatments: Chemotherapy (Xeloda, CAPOX), radiation, surgery (tumor resection)

Jackie S., Rectal Adenocarcinoma, Stage 3B/4, Lynch Syndrome



Symptoms: Blood in stool, constipation

Treatments: Chemotherapy (oxaliplatin & 5FU), radiation, surgeries (rectal resection, total hysterectomy, ileostomy), immunotherapy
Maria

Maria A., Rectal Cancer, Stage 3C



Symptoms: Fatigue, weight loss, fast heart rate, bladder infection

Treatments: Chemotherapy, radiation, surgery (tumor removal)

Justine L., Rectal Cancer, Stage 3B/ 4



Symptoms: Increasing bowel movements (up to 20 a day), some rectal bleeding

Treatments: Chemoradiation (capecitabine , FOLFOX), surgery (colectomy), SBRT radiation, cancer ablation, Y90 (radioembolization)

Categories
Melanoma Opdualag (nivolumab & relatlimab-rmbw) Patient Stories Skin Cancer Surgery Targeted Therapies Treatments

Caitlyn’s Stage 4 Melanoma Story

Caitlyn’s Stage 4 Melanoma Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Caitlyn M. feature profile

Caitlyn was diagnosed with stage 4 melanoma at 25 weeks pregnant. Her symptoms began with severe side pain, which was initially misdiagnosed as muscle spasms. After the pain escalated to pelvic pain, she was eventually airlifted to UCSF, where doctors discovered she had been bleeding internally. Further tests revealed tumors in her breast, up and down her spine, and brain, marking an aggressive spread of melanoma.

At 25 weeks pregnant, Caitlyn underwent emergency surgery to stop the internal bleeding, with her daughter closely monitored throughout. Lydia was born prematurely at 26 weeks, weighing just 2 lbs 4 oz. Five days later, Caitlyn began her cancer treatment.

The tumors responded so rapidly to the treatment that Caitlyn’s kidneys couldn’t keep up, leading to dialysis. Her health challenges continued as she suffered from multiple fractures in her spine, seizures, and brain tumors, and had to relearn how to walk. Despite these overwhelming difficulties, Caitlyn remains focused on being a mother to Lydia and fighting for her future.

Caitlyn’s treatment plan includes monthly visits to UCSF, where she receives Opdualag, despite being allergic to it. The treatment process is arduous, involving multiple blood draws, difficulty finding veins for infusions, and prolonged treatments due to her allergies. Caitlyn experiences severe side effects, including extreme fatigue, migraines, nausea, and stretch marks from swelling, which have left her with fragile skin prone to blood blisters.

Throughout her ordeal, Caitlyn emphasizes the importance of maintaining a positive mindset and being your own advocate. She recounts how her initial concerns about a mole were dismissed by doctors, which later proved to be skin cancer. Now, she is passionate about educating others on the importance of self-checks, sun safety, and second opinions. Caitlyn also shares her efforts to support melanoma research by starting a small business, with part of the proceeds going towards the cause.

Caitlyn’s main motivation is her daughter, Lydia, and she is determined to be there for her milestones. She draws strength from her late godmother, who remained positive despite her cancer. Caitlyn advocates for living each day to the fullest, ensuring that her legacy is one of positivity and resilience. Her message to others is to cherish each day and never hesitate to seek the care and support needed, even in the face of daunting challenges like a stage 4 cancer diagnosis.


  • Name: Caitlyn M.
  • Age at Diagnosis:
    • 27
  • Diagnosis:
    • Melanoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Severe pain on the side pain that worsened over time
    • Pelvic pain and a feeling of pressure resembling labor
    • Swollen lymph node on the cheek
  • Treatments:
    • Emergency surgery at 25 weeks pregnant to stop internal bleeding
    • Multiple surgeries to remove tumors
    • Targeted therapy: Opdualag (nivolumab and relatlimab-rmbw)
Caitlyn M.
Caitlyn M.
Caitlyn M.
Caitlyn M.
Caitlyn M.
Caitlyn M.
Caitlyn M.

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


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More Skin Cancer Stories


Ellis E., Melanoma, Stage 3A



Symptoms: Changing mole on arm

Treatment:s Lymph node resection, immunotherapy (Opdivo), targeted therapy (BRAF inhibitor)
...

Rich B., Melanoma, Stage 3B



Symptom: Suspicious, dark spots
Treatment: Immunotherapy (nivolumab)
...
Jenn shares her recurrent melanoma cancer story
Jenn S., Melanoma, Recurrent (Stage 0 & Stage 1B) Symptom: Asymmetrical, multi-colored, large mole on the shoulder

Treatment: Surgeries, skin checks...
Chris shares his stage 4 mucosal melanoma story
Chris W., Mucosal Melanoma, Stage 4 Symptoms: Sweaty rectum, zit-sized lump in rectum that grew, lump that developed in right-groin

Treatments: Surgery, chemotherapy, radiation, immunotherapy, tumor-infiltrating lymphocytes (TILs)...

Amy H., Melanoma, Recurrent (Stage 1B, Stage 1A & Stage 0) & Cervical Cancer (Stage 1)



Symptoms: Melanoma: Bad sunburn leading to scarring; Cervical: painful intercourse, cramps, pain during Pap smear

Treatments: Melanoma: Excision and Mohs surgeries, Cervical: partial hysterectomy
...

Categories
Adrenal Cancer Chemotherapy EDP (etoposide, doxorubicin, and cisplatin) Immunotherapy Keytruda (pembrolizumab) Lenvima (lenvatinib) Lysodren (mitotane) Patient Stories Radiation Therapy Stereotactic body radiotherapy (SBRT) Surgery Targeted Therapies Treatments

Melinda’s Stage 4 Rare Adrenal Cancer Story

Melinda’s Stage 4 Rare Adrenal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Melinda N. feature profile

Melinda was diagnosed with stage 4 adrenal cancer in November 2021. Her story began with a confusing array of symptoms that baffled doctors for months before her cancer diagnosis.

In July 2021, Melinda experienced swelling in her face, stomach, hands, and feet, which she initially attributed to allergies. She developed unexplained high blood pressure and also noticed unusual symptoms like acne on her back and chest, an itchy and tingling tongue, burning and discharging eyes, hair loss on her head, and hair growth on her upper lip and chin. Additionally, she suffered from bloating, stomach pain, food aversions, easy bruising, slow healing, and eventually missed her periods. Despite these alarming symptoms, her doctors in various specialties struggled to pinpoint the cause.

In October 2021, after months of frustration, Melinda saw an allergist who, unlike others, took the time to review her medical history and symptoms thoroughly. Concerned about the swelling in her stomach, the allergist ordered a scan, which revealed a large tumor on her right adrenal gland. Initially thought to be a non-malignant pheochromocytoma, further tests at the Mayo Clinic revealed it was adrenocortical carcinoma, a rare and aggressive form of cancer affecting just one in a million people annually in the U.S.

This diagnosis brought Melinda a mix of emotions. The confirmation of cancer was terrifying, but she felt relieved to finally have an explanation for her symptoms. She quickly flew to the Mayo Clinic, where a team of seven surgeons successfully removed a 24 cm tumor that weighed 3.2 pounds and had wrapped around her vena cava.

After surgery, Melinda was prescribed EDP-M (etoposide, cisplatin, doxorubicin, and mitotane) and later underwent stereotactic body radiation therapy (SBRT). Despite initial treatments, her cancer metastasized to her liver, lungs, spine, and hips. Melinda describes the difficult side effects of treatments and also faced complications that required additional medical interventions.

After finding that EDP-M was ineffective, Melinda’s oncologist switched her to a combination of Keytruda (pembrolizumab) and Lenvima (lenvatinib), which started showing positive results in reducing her tumors. She highlights the importance of consulting with specialists and having a collaborative medical team, which she believes has been crucial to her progress.

Melinda reflects on the importance of self-advocacy in her health journey. Despite moments of self-doubt, she was persistent in seeking answers. She emphasizes the value of being thorough, organized, and proactive in medical situations. Melinda’s experience also highlights the role of complementary therapies and the need for better access for those with chronic illnesses.

Melinda’s journey highlights the importance of self-advocacy, mental health, and the support system during cancer treatment. Her experience as an LGBTQ+ patient underscores the need for more inclusive and understanding healthcare practices. Despite the challenges, she chose not to focus on prognosis. Instead, she focused on maintaining a positive mindset and living her best life.


  • Name: Melinda N.
  • Age at Diagnosis:
    • 32
  • Diagnosis:
    • Adrenocortical carcinoma (adrenal cancer)
  • Staging:
    • Stage 4
  • Symptoms:
    • Swelling in the face, stomach, hands, and feet
    • High blood pressure
    • Acne on back and chest
    • Itchy and tingling tongue
    • Burning in the eyes with discharge
    • Hair loss on the head
    • Hair growth on upper lip and chin
    • Bloating and stomach pain
    • Food aversions
    • Easy bruising
    • Slow healing
    • Missed periods
  • Treatment:
    • Surgery to remove the tumor
    • Chemotherapy: Lysodren (mitotane), EDP (etoposide, doxorubicin, and cisplatin)
    • Radiation: Stereotactic body radiotherapy (SBRT)
    • Immunotherapy: Keytruda (pembrolizumab)
    • Targeted therapy: Lenvima (lenvatinib)
Melinda N.
Melinda N.
Melinda N.
Melinda N.
Melinda N.
Melinda N.
Melinda N.

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


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More Adrenal Cancer Stories


Ashley S., adrenal cancer



Symptoms: Swollen ankles, very low potassium levels
Treatment:Surgery (removal of tumor, open-heart surgery); chemotherapy (EDP, Cabometyx, Carboplatin, mitotane); immunotherapy (Keytruda); radiation
...
Ashley P. feature profile

Ashley P., Adrenal Cancer, Stage 4



Symptom: Mild back pain on her left side that escalated in severity
Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib
...
Melinda N. feature profile

Melinda N., Adrenal Cancer, Stage 4



Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods

Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib)
...