Tag: Lung Biomarker Story

Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

Post author By Chris Sanchez
Post date November 13, 2025
No Comments on Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

November 13, 2025

Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

For months, Laura managed a stubborn cough, but with a quiet pull from her intuition that something was not right. In South Carolina, where she ran a small handmade jewelry business, she also noticed deep fatigue and strange joint pain creeping into her days. These symptoms appeared slowly and at different times, so no clear connection was made. Intervention would come when, during a routine physical, she mentioned this year-long cough. A chest X-ray and CT scan were ordered right away and that’s when the truth emerged: a six-centimeter tumor and a diagnosis of stage 4 ALK-positive lung cancer.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Laura’s treatment for ALK-positive lung cancer initially focused on targeted therapies called tyrosine kinase inhibitors or TKIs. Laura cycled through several options, always balancing side effects against her quality of life. “If this is what my life is going to be like… it isn’t worth it,” she recalls, after struggling with the severe side effects of her first TKI. (Editor’s Note: TKIs work by blocking tyrosine kinases, enzymes that may be too active or may be found at high levels in some types of cancer cells. Blocking tyrosine kinases may help keep cancer cells from growing.)

Encouraged by her physician to prioritize what mattered to her, Laura took breaks, joined a clinical trial, and ultimately found a better fit with her current medication. “Patients should advocate for what works best; if side effects or treatments aren’t acceptable, speak with your doctor about changing things,” she says.

Laura’s ALK-positive lung cancer experience fundamentally shifted her identity and outlook. She speaks candidly about the grief and recalibration forced by advanced cancer, the evolving sense of self, and the acceptance of cancer as a chronic condition, if a life-defining one. Daily life is different, but Laura leans on support groups and prioritizes humor and connection.

“Given any type of tragedy, you either decide to learn from it, rebuild from it, or let it take you down,” Laura says. “And I think more of us decide not to let it take us down.”

Watch Laura’s video above, and scroll down to read through her edited interview transcript for more on:

Why you should advocate for thorough diagnostics if your symptoms persist, regardless of smoking history or age
How quality of life is essential; it’s valid to adjust or pause treatment if side effects outweigh benefits
How proactive support in the form of family, community, mental health, and provider relationships can transform even the hardest experiences
Why humor, connection, and redefining identity are key to sustaining hope and finding meaning
How Laura has learned to accept new limitations, embrace choice, and support others through lung cancer community groups

Name: Laura R.
Age of Diagnosis:
- 37
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- ALK
Symptoms:
- Persistent cough
- Fatigue
- Bone pain
Treatments:
- Targeted therapies: tyrosine kinase inhibitors (TKIs), including through a clinical trial

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Laura’s Interview

My name is Laura
My first symptoms and red flags
Finding my care team
My reaction to my diagnosis
Genetic testing impacted my treatment options
My experience with TKIs, their impact, and side effects
My current work and support system
The impact of cancer on my daily life
Therapy experience and my quality of life
My advice for others

My name is Laura

I live in South Carolina. I was diagnosed in May of 2023 with stage 4 non-small cell ALK-positive lung cancer.

It’s changed a little bit since my diagnosis, but before that, I owned a small handmade jewelry business. I still own it, but I do that part-time now. What I do for fun is horseback riding. I don’t get to do it as much as I’d like, but hopefully more so in the future now.

I try really hard to be funny. Whether or not I am, I don’t know, but I think I’m funny.

My first symptoms and red flags

It was hard because I overworked myself. I was very focused on work. I should have gone in sooner.

The first sign was a cough that wouldn’t go away. I’d been coughing for almost a full year, but it wasn’t bad. It was just a little bit in the morning. Sometimes during the day, I wouldn’t cough at all. It was just in the morning. Sometimes the cough would produce phlegm, sometimes it wouldn’t. Some days it got better, other days it got worse. It was a persistent cough that didn’t go away.

Over the years before my diagnosis, I became more fatigued, but gradually. I was approaching my late 30s, and I wondered, “Am I just getting old? Why am I tired all the time?” I also had a lot of joint issues, not debilitating, but pains in my wrist. I complained to my doctor, and she prescribed arthritis cream. I was in my 30s and wondered if that was normal. She said, “Yeah, it happens to some people.”

Those were the main symptoms: joint pain, fatigue, but the biggest one was the cough. I was lucky to have a cough because where the tumor was located, it was close to a bronchial opening, so the tumor caused almost an obstruction. I was trying to cough it out, but you can’t cough out a tumor.

I didn’t go to the doctor immediately. I lived with it, hoping it would go away. I was self-medicating. I’d always had allergies, so I kept taking allergy medications, switching between Allegra and others, but nothing helped.

At my yearly checkup, I talked about arthritis and back pain. I brought up the cough, and the doctor was concerned. She asked if I was from a region where there are common fungal infections in the lungs. I wasn’t. She thought a cough that long was unusual, so she sent me for a chest X-ray at the VA. The X-ray found a tiny nodule a few millimeters across. They said it’s common with service members and ordered a CT scan to monitor the size. After the CT scan, instead of a six-millimeter nodule, it turned into a six-centimeter mass, which is very large. That started the diagnosis process in May 2023.

Finding my care team

My first care team was a whirlwind, but I have healthcare through the VA, so it was all covered.

They told me to see a pulmonologist. I was referred to Dr. Nicole Tanner at MUSC in Charleston. She is amazing. She made me feel comfortable. She showed me the CT scan and explained the next steps with biopsy and diagnosis.

The VA is attached to MUSC, so I’ve received excellent care, and everything moved quickly. Waiting two days for a phone call felt long at the time, but the diagnosis from primary care to biopsy was within two weeks. I was given a pulmonologist and an oncologist.

At the VA, you can get a second opinion, so I got recommendations for a local thoracic oncologist. I also researched and found a specific ALK-positive specialist.

My reaction to my diagnosis

The news was given to me over the phone, which was fine. After the CT scan, my primary care doctor called quickly and said, “We’re going to do this.” I asked, “Why do I need to see an oncologist? Could this tumor be something else?” She said, “No, unfortunately, it’s cancer.”

It took me by surprise. I Googled possibilities, but didn’t think it was cancer. I said, “There’s absolutely no way.”

It took me a long time to believe it. I don’t even know when I fully recognized I had lung cancer.

I am a nonsmoker. We all went through COVID and had coping mechanisms, but that was rare and not a daily thing. Cigarette smoke? No.

Being diagnosed and treated for cancer as a woman in your late 30s is intense emotionally, hormonally, and mentally, because you’re aging and things are changing.

You think about childbirth, not being young anymore, friends with kids… it’s difficult to cope with all at once. I had to slow down after the diagnosis. It’s way too much for anybody to take on by themselves.

You have cancer, you can’t do this or that, you have to take medication, and then side effects prevent you from doing things. It’s too much.

Genetic testing impacted my treatment options

We waited to get my PET scan results to stage me.

Since I wasn’t presenting as poorly as some, maybe because of my age, there was no need to start chemo until genetic results came back. The genetic results [ALK positive] gave good news; there was a targeted therapy for me.

I started first-line therapy with my first TKI two years ago. Now I’m on my third.

Surgery isn’t an option, since my cancer is stage 4 metastatic; it has spread to different areas. Some elect to have surgery, but for me, surgery isn’t curative, so it’s not an option.

My experience with TKIs, their impact, and side effects

The first TKI wore me down. I lasted about a year, but couldn’t handle the side effects physically or mentally. I felt worse than before I had cancer, and I almost gave up. My specialist said that no one would force me to take it, which was freeing. I took a break, but the cancer grew back.

Then Dr. Lynn at Mass General told me about a clinical trial with cutting-edge medication. It’s rigorously tested and the latest available. I got on the trial, but my liver couldn’t tolerate the medication, which is common. I had some side effects from the clinical trial drug, but it was much better than the first drug. I loved the medication and was sad to stop.

I stopped and started my third TKI a month ago, and I’m doing pretty well so far. Hopefully, this one will stick. The drug I’m on now has minimal side effects. I increased my dose after consulting with my doctor because I had no side effects and wanted to see if the higher dose would hold.

There’s no end to it; treatment keeps going. TKIs are not a cure but must be taken until they stop working. Monitoring is constant with CT scans every three months to check tumor size. If it stays the same, that’s good news. Residual cells never go away. Researchers are working on vaccines and cures, but it’s a long process.

I kept my care at Duke University Hospital, where the clinical trial was run and supervised by an ALK-positive specialist. Instead of returning to Charleston, I now see the ALK specialist at Duke.

My current work and support system

I’m doing jewelry part-time and have stepped back a lot. Having my own business is great because I can return when I want. The connections are still there, just fewer. I pick when to work.

I have a lot of friends. My recently made friend, Emily, now lives in Washington state and has helped a lot. My sister, my only family member, left before, and our relationship wasn’t good. The diagnosis didn’t improve things, but we worked hard to rebuild our relationship, and it’s gotten much better. That’s one good thing about cancer; it brought my sister and me closer.

The impact of cancer on my daily life

The first year was the hardest; the second year was also difficult, mostly in finding a new normal. It’s like grieving loss, scrambling to survive, and rebuilding. It’s completely overwhelming, but you either do it or you don’t.

I have to do it. With any tragedy, you either learn and rebuild, or let it take you down. Most decide not to be taken down.

The hardest moment I’ve faced so far was deciding to stop the first TKI. I was going through a lot, dealing with side effects, life changes, and reflecting on a year of medication with a worse quality of life. I’d basically given up and stopped medication.

When I spoke to Dr. Lynn, she said, “What are you doing? You don’t have to take it.” I didn’t know that.

I’m fortunate to have supportive friends willing to help whenever I need it. Mental health is very important for people with this diagnosis since it’s life-changing. Some people aren’t sure what to do. There are many who care and want you to fight.

My identity has completely changed because I will always carry cancer; there is no cure. I think about death every day, almost like a built-in ticking time bomb. Not that I expect to die tomorrow, but it’s always there. At the same time, I appreciate life and can do what I want, such as take medication or not.

Therapy experience and my quality of life

I was already in therapy before the diagnosis and continued afterward.

I learned to speak up and eventually switched therapists, which was the best decision. If you don’t like your therapist or aren’t getting better, get another one.

Quality of life is often overlooked in cancer care, but it’s crucial that patients aren’t tortured to death. For me, quality is more important than length of life.

Everyone’s priorities are different. Some want to live at any cost. I think this changes how care should be delivered.

If you don’t like your treatment, talk to your oncologist. There are usually other options.

Advocacy is vital because your life won’t get better until you ask for change.

My advice for others

You’re not alone.

One of the best things I did was find a support group online. A friend recommended it, and connecting with others who understand made a big difference.

We all go through similar things, though differently. Having that support group has helped a lot over the past two years.

Thank you for sharing your story, Laura!

Inspired by Laura's story?

Share your story, too!

More ALK+ Lung Cancer Stories

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B

Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Tags ALK+, Lung Biomarker Story, stage 4

Chemotherapy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy ROS1 Targeted Therapy Treatments

Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 5, 2025
No Comments on Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

November 5, 2025

Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Drea is a video journalist who was only 26 when she was diagnosed with stage 4 ROS1+ lung cancer. It came as quite a shock. She never imagined that a physically active, young non-smoker who had never had any health issues, could ever get cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Drea’s story began in early 2023. She began to experience some strange symptoms, including a swollen ankle from an unexplained deep vein thrombosis or blood clot, odd bruising, extreme weight loss, and persistent shortness of breath. She went to the ER several times, had some urgent care visits, and also saw specialists, but was reassured that what she was experiencing was due to stress or other such causes. She started to doubt herself even as her health began to deteriorate. Eventually, she succeeded in having a CT scan done. It revealed a large mass in her lung. Further tests confirmed that she had stage 4 non-small cell lung cancer that had already spread to multiple locations.

Drea’s experience has convinced her that self-advocacy is key. She explains why we always need to trust our instincts. “If you feel deep inside that something’s wrong, keep pushing,” she advises. Because she was persistent, she eventually had comprehensive biomarker testing, which identified the ROS1 mutation. This discovery opened the door to life-extending targeted therapies.

Living with stage 4 ROS1+ lung cancer has helped Drea redefine survivorship. It’s not just about existing; it’s about living fully. The targeted therapies she’s having allow her to enjoy climbing, biking, beach days, and gardening. She’s open and frank about her ups and downs, and acknowledges the chaos and struggle of having to navigate cancer in her 20s. But she’s decided to treat each day as an opportunity by focusing on what she can control rather than agonizing over the “what-ifs.”

Cancer didn’t strip Drea of her identity. Instead, it’s added new layers. She’s not just a video journalist anymore; she’s also an advocate, connector, and source of hope for others. She shares her story openly to help more people realize that “anyone with lungs can get lung cancer,” and, by doing so, to break the stigma that lung cancer is a smoker’s disease.

Drea urges others to be their own best advocate, seek second opinions, push for biomarker testing, link up with patient groups for support, and, most importantly, give themselves grace. Watch her video for more on:

Her diagnosis at such a young age and how she became her own health advocate against all odds
Drea’s struggle to be heard before her stage 4 ROS1+ lung cancer diagnosis
How targeted therapies gave her her life back
Why Drea names her cancer ‘Carl’, and how humor helps her thrive
The advice she offers young people who don’t feel heard by doctors

Scroll down for the transcript of Drea’s video interview!

Name: Drea C.
Age at Diagnosis:
- 26
Diagnosis:
- Non-Small Cell Lung Cancer
Stage:
- Stage 4
Mutation:
- ROS1
Symptoms:
- Swollen ankle resulting from a deep vein thrombosis or blood clot
- Mysterious bruising
- Extreme weight loss
- Persistent shortness of breath
- Rattling sound coming from the throat while breathing
Treatments:
- Radiation therapy
- Chemotherapy
- Targeted therapies

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Drea’s Interview

I'm Drea
When I first felt something was wrong
The moment everything changed
I took my health into my own hands
Learning my biomarker
My treatment plan
How I feel about clinical trials
How I’m navigating my diagnosis and being young
“Hope” is a complicated word for me
What I want others to know

I’m Drea

My name is Drea. I was diagnosed with stage 4 non-small cell lung cancer at 26.

When I first felt something was wrong

I first started feeling off at the beginning of 2023. It began with the DVT, which is a blood clot that resulted in a swollen ankle, and at the time, it didn’t make sense to me because there were no known injuries; I hadn’t fallen, I didn’t trip or anything. I had gone to urgent care, which then sent me to the ER, and then they discovered that it was for sure a blood clot, so they put me on thinners. Following that, I kept having these sorts of mysterious symptoms, among them just bruising up and down my body, and extreme weight loss. It felt like I was in a pit of despair. I felt like there was something off, and I don’t know how to describe that feeling. And I think throughout the process of 4 or 5 months, the symptom that started scaring me the most was the shortness of breath. I think by the time they came around, I had this really weird, awful, rattling sound coming from my throat. Google scared me when I googled that one up. The entire five months of these symptoms, I had gone to urgent care a couple of times, I had gone to the ER, I had seen a specialist, and I kept getting sort of brushed off, getting told, “You’re young, you’re probably just needing a little more rest, you’re probably just tired or stressed.” Cancer or any sort of serious disease was never really mentioned. But then I remember in May, going back to that same urgent care that months earlier had prescribed me an inhaler for the shortness of breath, that same urgent care doctor had finally ordered a CT scan.

He gave me a call, and there was a sort of newfound sense of urgency in his voice. He told me I needed to go to the E.R. immediately. There was a mass that was found in the scan, and it did not look good. So I just drove myself over across the street and got admitted to the E.R. That was my first hospital visit that resulted in, I think it was like a 7 or 8 day stay.

They ran a swath of tests. My blood counts came back, not looking great, but nothing to signal cancer. But it was the imaging that scared doctors the most. They had found this huge lemon-sized mass on my right upper lobe, and sort of nodules scattered across it. They ended up doing a PET scan, and that’s when they found that there was also cancer up and down my spine and pelvis, and not even my noggin was spared, unfortunately. So they knew right away that this was serious and that it was likely cancer. And so I think it was maybe on day 4 or 5 of that hospital stay that they got me in for a bronchoscopy, and then I got the news.

The moment everything changed

Getting told that I had lung cancer at 26, as a never-smoker, never picked up a cigarette, or none of that, was shocking. I did not understand how that could even be possible. I never knew that non-smokers got lung cancer. My dad died of lung cancer in his 40s. He was a very heavy smoker, so I doubt he had any sort of mutations. But because of his lung cancer death, I had made the choice early on that I would never pick up a cigarette. I wouldn’t vape because I saw what it did to others. But then to find out that that didn’t save me from lung cancer was a shock.

Ten out of ten, I would not recommend getting your cancer diagnosis in the E.R. It is awful. So take that with you wherever you go. Try to establish care with the primary care physician who knows you and your history, because getting my diagnosis in the E.R. was not pleasant, to say the least. I think I was there anywhere between 5 and 7 days. It was complicated because after I got that diagnosis, I got discharged. I got sent home with no oxygen for some weird reason. Here’s a metastatic lung cancer patient who has cancer across both lungs, up and down the spine, in her noggin, and she still got sent home with no oxygen. And I just didn’t have anyone to check up on me in the way that I would imagine others would have if they didn’t get their diagnosis in the E.R.. It wasn’t until my at-home nurse noticed that my breathing was getting progressively worse, and she told me to head back to the E.R., that they found that my situation was getting even worse. And so the second time I got admitted, I had to get an emergency blood transfusion and start traditional chemo right away, the very next day, and that was the day that my oncologist told me, This doesn’t work.

We might have to put you in hospice. Because at this point, we had not gotten the biomarker testing results back. And so that was when things finally hit me that this was serious, that I don’t have my youth, I don’t have my young age to rely on, and that something needs to happen. And so I remember lying in bed with my mom by my side at this point, just panicking internally. And that was when I decided to just start calling around to see if there was a comprehensive cancer center that would take me right away, because I did not want to be put in hospice.

I took my health into my own hands

Hearing the word hospice just rattled me to my core. I knew that I had to do something to get myself from getting buried six feet under, and so I started crawling around trying to see what the next best option was. What is an option that is more familiar with these rare types of lung cancers? At the time, I didn’t know that I had ROS1 because we were still waiting on biomarker testing. But the oncologist at the time said that it was very likely, given the fact that I never smoked and I’m so young. I started calling around to this one major comprehensive cancer center in Florida. It was right after that conversation with the oncologist, and I think the call rep could hear the shakiness in my voice because I was trying to talk through tears, just trying to see if there was any sort of openings in the immediate couple of weeks. After all, things were serious, and as soon as I was discharged, I needed to seek care elsewhere to see what other options I had. Luckily, the lady found me in an appointment, and I was able to get in on time. I think it was two weeks later, and that’s how I ended up at my second hospital.

Learning my biomarker

I was actually very lucky that my oncologist at the time knew that there was a specific subtype of lung cancers that tend to impact younger nonsmokers. And he happened to be working that day and saw my case, and he ordered comprehensive biomarker testing right away. I think I got the results after just a couple of weeks. I consider myself very lucky because if it weren’t for biomarker testing, I don’t think I’d be here today.

It allowed me to take targeted therapies, which have been shown to work well with my specific type of cancer. Targeted therapies in general have truly revolutionized what it means to be metastatic and living with lung cancer. And it’s just unfortunate that there are people across this country, across the globe, who are not afforded that option because they’re doctors, or the hospital care system just may not be aware that comprehensive biomarker testing is a thing.

I was kind of all over the place, still trying to process the news. But when my oncologist at the time mentioned that comprehensive biomarker testing could open the window to newer forms of treatments, I was like, all right, let’s do it. And then when I finally got the news and I saw that I had ROS1, which tends to impact, I think it’s like 2 to 3% of all non-small cell lung cancer cases, I was like, great, so here’s to celebrating having a mutation, I guess, let’s do it. It was an interesting, interesting time. A couple of weeks later, my brother was doing some research on my behalf, and he found this incredible nonprofit advocacy group that does a lot to build community and share resources for people with ROS1. They’re called the Ross Wonders, and they have just been a godsend to me. They showed me how to be a better advocate for myself, they’ve connected me with those long-term cancer survivors, and they’ve shown me that you can still live a long and fulfilling life, although you have metastatic lung cancer.

My treatment plan

As soon as we found out that I had ROS1, it became very apparent that we had a better option than that platinum-based chemo that I had already gotten one round of. At the time, I had also gotten radiation. But there has been such incredible research out there about these targeted therapies that the best course of action at that time was to just stop chemo and go on a TKI pill, and so I was put on my first drug.

I got about three years of pretty great response, pretty great quality of life on what I like to call my beloved drug, and it was very good to me; it kept my cancer under control, and I was able to wrangle my control. And I was able to wrangle my life back from cancer in a way that I never envisioned, because I knew nothing about targeted therapies and what sort of quality of life that might have meant. It was great for me for about three years. Unfortunately, earlier this year, I had to switch to another drug, but thankfully, things have been going pretty well on this second TKI as well.

It’s gotten a pretty good control on some of the new lesions that have popped up, and I’m still able to live a relatively normal life. I have a couple of annoying symptoms, but they’re still manageable.

Everyone’s different. Everyone’s going to react differently to each drug. We may have the same cancer with the same lesions and other comorbidities, but we may still react differently to whatever drug we’re taking. I consider myself pretty blessed because I seem to be a fairly good responder to TKIs. I don’t deal with any sort of debilitating symptoms. I know that that’s not the case for a lot of other ROS1ers; unfortunately, I wish it were. But so far, everything that’s been thrown at me has been manageable. I’ve been able to get back to my old life. I climb a lot, I bike, I’m able to take my dog on long walks, I’m able to be out in the sun and garden, I’m a very big beach bum, true Floridian. And I have TKIs to thank for that.

How I feel about clinical trials

I will say a lot of people tend to fear the idea of clinical trials because they like to think, “I don’t want to be a lab rat, I don’t know what sort of outcomes I’m going to see if I join a clinical trial studying a very new drug.”

Editor’s Note: In cancer trials, no one is given only a sugar pill when an effective standard treatment exists. Instead, participants receive either the current standard-of-care treatment or the standard-of-care plus a new therapy being studied, and everyone is closely monitored for safety and benefit. Many of the oncologists we interview describe cancer clinical trials as "getting tomorrow's medicine today."

There are a lot of incredible treatments out there that are revolutionizing what it means to live with these sorts of subtypes of lung cancer, whether it’s ALK, EGFR, or ROS1, like what I have. These therapies are exciting; they’ve shown a lot of great promise. A lot of times, these drugs are being tested for years in a clinical trial setting, and there is early data that you can glean from and decide if that’s a good option for you at the time. If I’m ever at a point where I do run out of TKIs, I will gladly volunteer for science and to help the next lung cancer patient get access to even better drugs in the future.

How I’m navigating my diagnosis and being young

Navigating cancer in your 20s and 30s is incredibly messy; it is chaotic. It is a roller coaster you go through, so many loops, it’s complicated.

I’m not going to deny that, it’s not an easy feat. I’m metastatic, which has caused me to grow up in a lot of different ways. For people who have been diagnosed at earlier stages, it is life-changing. Just because treatment wraps up and your hair grows back and you’re in remission or you’re cured, does not mean that your life goes back to normal or that you’re even the same person you were the day that you were diagnosed. So it is complicated, and I try to remind every cancer patient that I meet to just give themselves grace. It is a work in progress. I am three years out, three years into survivorship, and I am still learning what it means to live with metastatic cancer, and to live each day as if I’m living, not as if I’m dying.

Honestly, I try to just make the most out of whatever time I have left. If it is three months, if it is three years, if it is six years. Let’s pray for six years, I will take six years happily. I like to treat every day like a new day.

And if I’m having a crappy day or just the type of day where you just don’t want to get out of bed and you’re just stuck doom scrolling on your phone, I try to remind myself that tomorrow is a new day.

I used to just get stuck on all the what-ifs. Like, what if I spoke up sooner? What if I pushed for answers sooner? Would my life have been different? Would my cancer have been when it was stage 2 or 3 instead of stage 4? But at the end of the day, what does that do for you? What are you thinking about, the crappy cards that you were dealt day after day? What does that do for you? And so I try to just remind myself to focus on the things that I can control. And that is what my life moving forward is going to look like. Whether that’s for three months, three years, or however long, I know that I just want to make the most of each and every day.

“Hope” is a complicated word for me

I am cautiously optimistic that I will be able to get a good chunk of time out of whatever TKI lines are currently available. And I hope that I will be able to respond well to those therapies until the next best thing comes out.

And there are a lot of really new and exciting TKI drugs currently being studied in clinical trial settings. I try to talk to my cancer from time to time and just be like, “Oh, Carl, can you give me three years of peace, until that next best thing comes out?” I know that next year there’s going to be another TKI out in the market, or at least that’s what my oncologist has said, and what we hope is that it’s going to get approved by the FDA. I try to count my blessings every day and try to beg Carl from time to time to just behave for a little longer, and just go from there.

I like to view my cancer as an insidious roommate that just does not pay rent, that has been uninvited. What is the most awful name you could give that imaginary roommate? And the first name that came to mind is Carl, so his name is Carl.

Carl used to be lemon-sized, around five centimeters. I think he’s down to two centimeters, and he’s been stable.

He’s been behaving this way this whole time. It’s just that I get random lesions outside of the primary tumor that pop up, but for the most part, he’s been good.

What I want others to know

My last piece of advice would just be not to take a lot of stock in survival statistics or prognosis. My first oncologist told me I likely had just three months to live; lo and behold, I’m still here. Three years later, and I’m still going strong, I’m still kicking.

And I hear it all the time in the lung cancer community, fellow patients who have been given months to live, a year to live, and they’re still doing well. And while that may not be true for everyone, there is reason to remain cautiously optimistic because newer therapies are coming out every couple of years, and science is advancing in a lot of incredible ways.

I want people to know that anyone with lungs can get lung cancer. You do not have to be smoking eight packs of cigarettes a day to get lung cancer. I was 26 when I was diagnosed, and I have not once picked up a cigarette or a vape or any of that stuff, but I still got diagnosed with stage four non-small cell lung cancer. It is something that is happening to more and more young people, year after year, and we don’t know why. It’s terrifying.

If you’re feeling out of breath, if you’re seeing a lot of troubling symptoms that don’t make sense, whether it’s back pain and then this weird rattling sound coming from your throat, and you’re getting told by your doctors you’re fine, it’s probably pneumonia or asthma, here’s an inhaler, don’t listen to them. Seek better care and keep pushing for answers, because lung cancer cases amongst nonsmokers are going up. And at the end of the day, you’re going to be your own best advocate.

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Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 3, 2025
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November 3, 2025

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.

At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.

When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.

Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.

Watch Lysa’s video and read her story below to:

Find out how her back pain revealed her life-changing diagnosis
Learn why biomarker testing became Lysa’s game-changer
Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
Meet the woman who thrives beyond her diagnosis

Name: Lysa B.
Age at Diagnosis:
- 40
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- ROS1
Symptom:
- Severe but intermittent back pain
Treatments:
- Chemotherapy
- Radiation therapy
- Targeted therapy, including through a clinical trial
- Surgeries: lung resection, metastatic spine tumor surgery

Thank you to Nuvalent for supporting 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 to make treatment decisions.

Table of Contents

About Me
When I First Noticed That Something Was Wrong
The Moment Everything Changed
How I Learned About Biomarker Testing
Learning I was ROS1+ and Taking the Only Treatment Option Available Then
I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
Targeted Therapy Has Changed My Quality of Life for the Better
Anyone With Lungs Can Get Lung Cancer
My Advice to Others

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.
Lysa B. – Lung cancer patient

About Me

Hi, I’m Lysa.

I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.

When I First Noticed That Something Was Wrong

I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time.

I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back.

My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.”

We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours.

I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better.

I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.”

The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.

I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
Lysa B. – Lung cancer patient

The Moment Everything Changed

Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.”

I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.

How I Learned About Biomarker Testing

Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer.

It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.

I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.

At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.

Learning I was ROS1+ and Taking the Only Treatment Option Available Then

Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.

At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery.

My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.”

He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.

By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working.

I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.
Lysa B. – Lung cancer patient

I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed

We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years.

By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly.

We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.

I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.

I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.

Targeted Therapy Has Changed My Quality of Life for the Better

When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling.

I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world.

My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.

I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme.

Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day.

My biggest happiness is when I’m with my family and my dogs. I love my dogs.

I try not to let external things get me down. And I focus on trying to find the joy in every day.
Lysa B. – Lung cancer patient

Anyone With Lungs Can Get Lung Cancer

One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.”

I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death?

Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.

I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.

Cancer doesn’t discriminate.

You do not have to be alone.
Lysa B. – Lung cancer patient

My Advice to Others

There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone.

They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders.

These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.

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

Thank you for sharing your story, Lysa!

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How Wyatt Navigated a Surprise Diagnosis of Stage 4 Lung Cancer

Post author By Katrina Villareal
Post date July 19, 2025
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July 19, 2025

How Wyatt Navigated a Surprise Diagnosis of Stage 4 Non-Small Cell Lung Cancer with KRAS G12D Mutation

When Wyatt found out he had stage 4 lung cancer in early 2021, he had no idea it would reshape not just his health but also his purpose. Diagnosed during the height of the COVID pandemic, Wyatt’s experience navigating stage 4 non-small cell lung cancer with a KRAS G12D mutation has been anything but typical, and he’s turned that into his strength.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

It all started with migraines so intense they’d knock him out for days. Wyatt visited the emergency room multiple times, but doctors told him it wasn’t serious. Then came vision loss and frightening neurological symptoms, so he went to see his neurologist, who told him he had to have his shunt replaced. After a CT scan post-surgery, they spotted the lesions in his lungs.

The initial reassurance of it not being cancer quickly gave way to a life-changing diagnosis: stage 4 non-small cell lung cancer. Wyatt was blindsided. No cough, no pain, no classic signs — just cancer hiding behind confusing symptoms.

From the beginning, Wyatt had to learn the power of self-advocacy. He realized that doctors don’t always connect the dots unless you speak up. At one point, he had to document everything he was eating and throwing up just to be heard. For him, building a relationship with the right oncologist made all the difference.

Living with stage 4 non-small cell lung cancer meant becoming an active participant in his care. Wyatt didn’t know about biomarker testing or what the term “KRAS” meant at first. However, over time, he discovered communities like KRAS Kickers and began connecting with others like himself. That connection was powerful, especially for someone who also lives with HIV and has often felt overlooked in medical settings.

Through trial and error with treatment, Wyatt learned to advocate, adjust, and persist. He’s on his seventh line of treatment now, managing side effects like neuropathy, nausea, fatigue, and chemo brain with humor, creativity, and ginger candy. But what truly fuels him is sharing knowledge and support.

Wyatt’s not just surviving — he’s making sure others don’t have to feel as lost as he once did. He’s working on building an online document of resources, pushing for access and inclusion, and showing up for others. Community has been a lifeline, and Wyatt’s working to strengthen it, one conversation and connection at a time.

Watch Wyatt’s full interview to find out more about his story:

Discover how a brain shunt led to an unexpected lung cancer diagnosis.
How self-advocacy helped Wyatt reclaim control over his care.
Learn why finding the right doctor is more important than just going to a big-name hospital.
See how one resource-filled document opened doors Wyatt didn’t know existed.
From cancer camps to ginger tea hacks, he shares tips with heart and humor.

Name: Wyatt D.
Age at Diagnosis:
- 33
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- KRAS G12D
Symptoms:
- Intense migraines
- Vision loss
- Muscle cramping in the hands
- Fainting
Treatments:
- Chemotherapy
- Immunotherapy

Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Wyatt!

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Stephanie’s Stage 2 ALK+ Non-Small Cell Lung Cancer Story

Post author By Katrina Villareal
Post date January 16, 2025
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January 26, 2025

Stephanie’s Stage 2B ALK+ Non-Small Cell Lung Cancer Story

Stephanie’s stage 2 lung cancer story began with a mild, intermittent cough in the spring of 2021, which she dismissed as allergies or weather-related. When her cough persisted, she mentioned it during a routine check-up with her general practitioner. After a chest X-ray, a mass was discovered on her lung. This led to a CT scan, which revealed a spiculated mass (having spikes or points on the tumor surface), raising concerns about cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

The diagnosis came after a bronchoscopy, which confirmed the mass was cancerous, specifically adenocarcinoma, a type of non-small cell lung cancer. She underwent a lobectomy, during which her surgeon removed two lobes of her lung to ensure all cancerous tissue was eliminated. Stephanie was subsequently diagnosed with stage 2B lung cancer. The pathology report confirmed that her lymph nodes were cancer-free and that she had clean margins with no signs of vascular or pleural invasion.

Following her surgery, Stephanie learned she was ALK-positive, a genetic mutation associated with non-smokers and younger lung cancer patients. Due to this, her treatment plan included chemotherapy and targeted therapy. After completing four rounds of chemotherapy, Stephanie was advised to begin targeted therapy, which is typically used in stage 4 cases but has shown potential benefits for earlier-stage patients, like her stage 2 lung cancer. Stephanie decided to follow this advice and has been on targeted therapy since completing chemotherapy.

Stephanie’s motivation throughout her diagnosis and treatment has been her young daughter. She remains dedicated to doing everything to stay healthy for her family. While she has had clean scans and blood work for the past three years, she continues to take her medication daily, hoping it prevents the cancer from returning. She advises others to know their biomarkers, seek second opinions, and join support groups for personalized guidance and support.

Name: Stephanie W.
Age at Diagnosis:
- 37
Diagnosis:
- Non-Small Cell Lung Cancer
Staging:
- Stage 2B
Mutation:
- ALK
Symptoms:
- Persistent cough
- Wheezing
Treatments:
- Surgery: bilobectomy
- Chemotherapy
- Targeted therapy

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Stephanie!

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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.

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.

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

Table of Contents

How I Learned I Had Lung Cancer
The Power of Knowledge: Biomarkers
The Many Faces of Lung Cancer
Doctors on the Frontlines
The Power of Us: The Story Behind The White Ribbon Project

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.

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 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.

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 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.

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.

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.

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.

Special thanks to The White Ribbon Project for its partnership.

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

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

Post author By Chris Sanchez
Post date October 18, 2024
No Comments on Ashley’s Stage 4 Non-Small Cell Lung Cancer Story

October 18, 2024

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

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

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

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

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

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

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

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Ashley!

Inspired by Ashley's story?

Share your story, too!

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

Doctors initially gave Lindsay only a few weeks to live. At that point, she was frail, weighing just 112 pounds and struggling with extreme fatigue and inability to eat or sleep. But amidst the bleak prognosis, she started to undergo targeted therapy treatments, which provided a glimmer of hope. The prescribed targeted therapy drug showed remarkable results within just 2 weeks, reducing or stabilizing much of the cancer. Her doctors also set her up to receive different types of radiation treatments.

However, by September 2022, the drug had stopped working, and Lindsay’s condition worsened dramatically, leading to a 10-day stay in the ICU where it was found that her cancer had spread even further. The spread included hundreds of tiny lesions in her brain, known as leptomeningeal disease, a particularly challenging condition to treat.

At this critical juncture, Lindsay transferred to Emory University Hospital, thanks to the intervention of her boss. There, her life was saved through intensive care and treatment, including the introduction of a second targeted therapy. This treatment, too, worked swiftly, nearly eradicating the cancer within 2 weeks.

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

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

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

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

Name:
- Lindsay W.
Age at Diagnosis:
- 41
Diagnosis:
- Stage 4B Lung Cancer Adenocarcinoma, ALK+
Symptom:
- Severe pain in her side
Treatments:
- Chemotherapy (targeted therapy)
- Radiation: SBRT cervical and thoracic spine and hip SRS radiation to brain tumor

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Lindsay!

Inspired by Lindsay's story?

Share your story, too!

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

Pre-diagnosis

Introduce yourself a little bit

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

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

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

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

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

Initial symptoms

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

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

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

Diagnosis

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

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

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

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

Receiving the news

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

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

Thinking about your children

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

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

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

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

Getting the official diagnosis

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

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

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

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

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

Reaction to the diagnosis

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

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

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

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

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

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

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

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

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

Patients share how they reacted to a cancer diagnosis »

Treatment

Radiation and targeted therapy

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

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

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

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

Undergoing radiation and targeted therapy again

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

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

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

Importance of biomarker testing

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

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

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

Advocating for yourself

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

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

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

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

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

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

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

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

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

Targeted therapy

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

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

How does Medicare cover cancer? »

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

Eating healthy during cancer treatment »

Side effects from Alectinib

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

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

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

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

Everybody needs advocacy. Everybody needs a platform.

The White Ribbon Project

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

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

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

Find out more about The White Ribbon Project »

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

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

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

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

Dan W. and family at Links for Lungs Foundation event

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

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

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

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

Living with cancer as a parent with young children

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

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

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

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

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

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

Being involved in the children’s lives

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

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

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

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

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

Inspired by Dan's story?

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Non-Small Cell Lung Cancer Stories

The White Ribbon Project

Luna O., Non-Small Cell Lung Cancer, ROS1+, Stage 4 (Metastatic)

Symptom: None involving the lungs; severe abdominal pain

Treatments: Chemotherapy, targeted therapy

Donnita B., Non-Small Cell Lung Cancer, Stage 1A

Symptom: None

Treatment: Surgery

Calvin M., Lung Cancer, Stage 1

Symptoms: Frequent illness (monthly cycles of sickness), breathing difficulties

Treatment: Surgery (pneumonectomy)

Jill F., Non-Small Cell Lung Cancer with EGFR Exon 19 Deletion, Stage 1A

Symptom: Nodule found during periodic scan

Treatments: Surgery, targeted therapy, radiation

Tags Lung Biomarker Story

Keytruda (pembrolizumab) Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Stereotactic body radiotherapy (SBRT) Xalkori (crizotinib)

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

Post author By Katrina Villareal
Post date June 29, 2022
No Comments on Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

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

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

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

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

Table Of Contents

Video
Pre-Diagnosis
Testing
Diagnosis
Finding the right doctor
Treatment
When did you learn about the MET amplification?
What are bone mets (metastasis)?
Process of radiation therapy
Changing the course of treatment
Biomarker testing
Targeted therapy
Responding to the treatment
- Feeling somewhat like yourself again
Follow-up plan
Living life after a cancer diagnosis

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

Video

Pre-Diagnosis

Tell us a little about yourself

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

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

What were your first symptoms?

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

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

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

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

What did the primary care doctor say?

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

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

Testing

What’s going through your mind during the tests?

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

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

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

What were the next steps?

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

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

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

Dealing with the wait for results (“scanxiety”)

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

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

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

Diagnosis

Getting the diagnosis

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

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

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

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

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

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

How did you break the news to your family?

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

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

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

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

Getting a second opinion

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

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

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

Finding the right doctor

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

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

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

Open lines of communication

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

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

Importance of access to information and knowledge

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

Treatment

Treatment options

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

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

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

How did you feel about possibly joining a clinical trial?

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

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

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

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

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

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

Efficacy of the Keytruda treatment

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

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

Video

Describe the Keytruda regimen

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

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

What did you have to do before the Keytruda infusions?

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

When did you start to feel side effects?

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

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

What helped you manage the GI problems?

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

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

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

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

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

Describe the rashes

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

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

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

Severe fatigue

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

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

Other side effects

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

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

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

When did you learn about the MET amplification?

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

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

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

What are bone mets (metastasis)?

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

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

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

Side effects of Xgeva

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

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

Opioids for cancer pain

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

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

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

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

Video

Process of radiation therapy

The radiation therapy was about a month.

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

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

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

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

Changing the course of treatment

What drove the decision to take you off Keytruda?

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

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

Dealing with the news emotionally and mentally

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

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

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

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

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

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

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

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

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

Was there anything else that helped with the depression?

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

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

I did nothing but sleep all day. Everything hurt.

Biomarker testing

How did you deal with the scanxiety?

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

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

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

Getting the biomarker results from the doctor

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

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

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

Targeted therapy

Difference in quality of life with the pill

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

Importance of biomarker testing

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

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

Side effects of Crizotinib

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

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

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

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

It lasted for about a year.

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

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

GI issues with Crizotinib

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

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

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

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

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

SBRT and cryoablation

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

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

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

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

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

Responding to the treatment

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

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

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

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

Feeling somewhat like yourself again

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

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

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

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

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

Follow-up plan

Follow up with PET scans

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

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

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

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

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

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

Stable but not yet NED (no evidence of disease)

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

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

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

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

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

Never give up and always hold on to that hope.

Living life after a cancer diagnosis

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

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

Just hang on to hope.

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