November 3, 2024

Samantha’s Stage 4 HER2-Lung Cancer Story

Interviewed by: Stephanie Chuang
Edited by: Katrina Villareal

At 37, Samantha was diagnosed with HER2 non-small cell lung cancer. Her symptoms started with a cough and chest pressure, so she went to urgent care. A cancer diagnosis was one thing, but a lung cancer diagnosis with no smoking history was mind-numbing to her. This is Samantha’s story of navigating a lung cancer diagnosis young and discovering a rare biomarker too.

Name: Samantha M.
Age at Diagnosis:
- 37
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- HER2
Symptoms:
- Persistent cough
- Chest pressure
- Fatigue
- Weight loss
Treatments:
- Chemotherapy
- Immunotherapy

Thank you to Bayer for its support of our patient education program! The Patient Story retains full editorial control over all content.

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

Table of Contents

Introduction
Pre-diagnosis
- Initial Symptoms
Diagnosis
Treatment
Having Hope with a HER2 Biomarker
Words of Advice

I went on a women’s trip in March 2024. When I came back from the trip, I developed a cough and noticed some pressure on my chest.

Introduction

I was born in California, raised in Hong Kong and the UK, and went back to the US around 12 years ago. I’m an active, outdoor adventurer. I love hiking, backpacking, camping, and anything to do with nature and being outside.

My husband Justin and I have been married for seven years. He is my absolute world and soulmate. I also have a nine-year-old German Shepherd.

Pre-diagnosis

Initial Symptoms

I went on a women’s trip in March 2024. There were 20 of us going on this adventure together even though I had never met them before. We were going to travel to India for 10 days. Before the trip, everything felt completely normal.

When I came back from the trip, I developed a cough and noticed some pressure on my chest. The air is not the best in India. A lot of people developed a cough, so I didn’t think anything of it, but the chest pressure was bothering me.

Two weeks after my trip, I was still hiking 4 to 5 miles a day, but there was a lot of pressure going on. I went to urgent care where a doctor listened to my chest and said, “Let’s do a chest X-ray to see what’s going on.”

The results showed that my entire left lung was full of fluid and fully collapsed. He said, “You need to go to the emergency room immediately.” I was still very naive then, thinking it was something I contracted from my trip.

They said, ‘We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.’

Diagnosis

Getting a Cancer Diagnosis

I went to the emergency room and they admitted me right away. They put in a chest tube, which was not a pleasant experience, and ended up draining 3 liters of fluid from my lung. They took that off for testing and did multiple CT scans. Even though I was admitted to the hospital, I was getting information about my scans through the apps. My result came through before the doctor even spoke to me. It said multiple lesions on the liver and lungs.

The infectious disease doctor came in and started asking me a ton of questions. They thought I might have tuberculosis because I’d lived and traveled to a lot of foreign countries, so they were very confused and running tons of tests.

Unfortunately, on day three of the hospital admission, they said, “We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.” They couldn’t give me a guarantee at that point, but this was looking like it. They said, “We’re going to discharge you. We’ll wait for confirmation, but we’re lining up an oncology appointment for you right away.” That’s when my world spiraled.

Playing the Waiting Game

We were living in Missoula, Montana, where my husband was stationed. The wait for the general oncologist was two weeks. There was no specialist there. After all, it was such a small town. That period was awful. It was confirmed through the app that I did have cancer, but I had no doctor to bounce anything off or ask questions.

At that point, it didn’t say what stage I was, and not being too familiar, I didn’t know what stage 1 versus stage 4 meant. I had no idea. I didn’t know anything other than I had non-small cell lung cancer.

I was spiraling on Google, which is not your best friend at this time of diagnosis. I figured out I was stage 4 and learned the five-year survival rate. I was doing more digging and came across mutations all this information on mutations.

I was eventually diagnosed with HER2 mutation, which was one I had never heard of.

When I went into that initial oncology visit, I had a list of questions, but the number one was if I could get a biomarker test for genetic mutations. He said, “Absolutely. It was on my list. You’re good because I know a lot of oncologists in these smaller towns are still not aware of these biomarker testing and treat lung cancer when someone could have a targetable mutation.”

I learned a lot about mutations during that two-week waiting period. I was eventually diagnosed with HER2 mutation, which was one I had never heard of. I didn’t come across it on any websites. It was a two-week window of the unknown with the fear and concern that I didn’t have long to live.

At my first oncology appointment in Missoula, he told me that I was stage 4, I was terminal, and had nine months to live. He told me before he even knew what mutation I had. No one should be told how long they have to live like that. It doesn’t help anyone. It set my mind back a long way. It was devastating.

Reaction to the Diagnosis

My husband, who was a 19-year veteran at this point, used to be a combat medic in Iraq and Afghanistan, so he’s seen a lot and I had never seen him cry ever. When I got that diagnosis in Missoula, he went outside the hospital and broke down. That was hard to see and almost harder for me than receiving the news personally. We’re so young. It was heartbreaking because he’s my soulmate. Knowing that I’m not going to be around and be with him when we’re 80 years old is gut-wrenching.

It hit him hard. He’s been an incredible caregiver. He’s been to every single appointment. He now handles the app for me and looks at all of my results. He’s been exceptionally supportive. I couldn’t ask for a better caregiver, but I would say it’s probably had more of an impact on him than on me.

Honestly, I had a breakdown… I thought that was the end of my journey because there was no primary targeted treatment for HER2.

Seeing a Lung Cancer Specialist

My husband said, “We’ll see this oncologist here, but let’s get you to a research hospital. Let’s see if the army will move us.” Within a month, the army approved the move. We were 45 minutes away from the Huntsman Cancer Institute. They have been so supportive and my work has also been so supportive.

I’m very grateful because I know a lot of people are not in that situation, especially those who are young, have cancer, and work full-time jobs. We put our house up for sale and within a month of my diagnosis, we had fully moved to be settled and to see a lung oncologist in Salt Lake City.

I learned to advocate for myself constantly. I was pretty forceful in messaging the Huntsman saying, “I need to get in as soon as possible. The general oncologist referred me. This is their letter.”

I was fortunate to get the best thoracic oncologist at the Huntsman. They looked at my chart and saw the severity of my stage 4 diagnosis. They got me in very quickly and wanted to redo my scans. They did a CT scan and a PET scan, which I hadn’t had at that point. They said, “We’re sending biomarker testing off the blood and also take a sample from Missoula and submit that as a tissue sample.”

They didn’t want to start any treatment until my biomarker test results came back, which took about two weeks. Meanwhile, my lung was continuing to fill up with fluid, so I had to get drained regularly. I was still active and nothing was stopping me. I was hiking at 10,000-foot elevation and I had no issues, but I felt very, very tired.

My biomarker test results came back and said HER2. I had never heard of HER2 in my life. I thought, “What on earth is this? What am I going to do with this?”

Honestly, I had a breakdown because I had been part of groups that talked about EGFR and ALK, all these great drugs, and people doing so well as young people on these targeted therapies. I said, “This is it. I keep on getting hit over and over again with bad luck and this is the final straw.” I thought that was the end of my journey because there was no primary targeted treatment for HER2.

Learning About the HER2 Biomarker

I started researching on Google, which wasn’t the best idea because when you search lung cancer and HER2, it says you do not have a very good prognosis at all and that wasn’t what I wanted to hear. That and not seeing anything about a primary targeted therapy was heartbreaking.

Finding Hope While Learning from Other Patients’ Experiences

I was introduced to someone who is part of an exon 20 group. I spoke to her within 24 hours of knowing that I had HER2 and she spent about an hour explaining everything: what was on the horizon as far as treatment was concerned, what was currently under clinical trials, and all of this hope.

I went from absolute turmoil, thinking this was literally the end, and that I have the worst prognosis to there could actually be some hope here and that changed my entire attitude. A lot of HER2 patients, when they find out about their mutation, aren’t told about the hope. They aren’t told about what’s coming. People have no idea unless they’re educated by other people.

I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.

Treatment

Treatment Options for HER2 Mutation

My oncologist is incredible. He called me right away and said, “Look. This isn’t what I was expecting either, but this is what we have.” He was trying to find silver linings. He said, “You have to come in every three weeks to get treatment, but your mutation works with immunotherapy. Your mutation can work with traditional chemo.” He was giving me some hope and that’s all I needed to hear.

He wasn’t an expert in HER2. I don’t think he has any other HER2 patients, but I was also fortunate because my coworker’s husband’s best friend is a HER2 expert and he’s been an incredible resource who I can text and get information or reassurance. Having those two resources has been invaluable.

My oncologist laid out what chemotherapy and immunotherapy I would be on. He also offered up a clinical trial, which split chemo and immunotherapy separately by a week, instead of combining them for a couple of rounds. He thought that I would be a good candidate.

Meanwhile, the HER2 expert who I was talking to was telling me about an amazing clinical trial for a drug for HER2 that was looking for people who had not been treated yet. My oncologist didn’t know about that trial, so I brought it up with him and he was kind enough to look into the research, look into the statistics, and weigh the options for me.

He said, “At the end of the day, it’s up to you which one you would like to proceed with, but here are my thoughts.” He was leaning towards traditional chemo and immunotherapy because immunotherapy had foundational success in the long run. The clinical trial was still in its early days in knowing what the outcome would be in the long term.

I also didn’t want to wait. Joining a clinical trial in another hospital involved flying, getting scans again, etc. I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.

As weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders.

Response to Treatment

I was responding extremely well and I’m very fortunate that I don’t have that many side effects at all. I have a couple of days of low energy, but other than that, I have been able to live my life, hike, and work.

I spoke to my husband and as weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders. There’s a horrible misconception that chemo and immunotherapy are awful and they don’t do anything. I get very upset about that because it has changed my life and has done amazing things for my body. I haven’t felt this well in years.

Looking back, even though I didn’t have very apparent symptoms, I was tired all the time. I would take naps during the day. I would be exhausted after 10 hours of sleep. I lost five pounds when I’ve never lost weight in my life. There were very subtle signs and if you look at pictures of me, I didn’t look well.

I’m feeling great right now. It’s like a double-edged sword because I have stage 4 cancer, but the chemo and immunotherapy are reducing my cancer burden so much that I feel like normal Samantha again.

Having Hope with a HER2 Biomarker

There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means. We don’t have a targeted therapy right now but that doesn’t mean it’s the end of the line. There are options out there.

Knowing that there are targeted therapies coming out very soon through clinical trials with statistics that show that they work exceptionally well is invaluable.

There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means.

Words of Advice

You see online that if you eat healthy and you exercise, there’s a very low chance you’re going to get cancer and I don’t like that at all. It makes me very angry and very upset because that makes people who are fit and healthy and doing all the right things think that they’re not going to be touched by cancer.

People must be aware that cancer does not discriminate. It doesn’t care if you’re fit and healthy. It will be in whoever it wants to be and that’s a fact.

Listen to your body. Be in touch with changes. If you have a lump, if you have a weird cough that has continued for months, if you have a weird mole that you’re not sure about, don’t wait.

If your gut is telling you something is wrong and your doctor says it’s fine and not to worry about it, get a second opinion. Push and be that person and get the answers you need to get. You have to advocate for yourself.

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

Thank you for sharing your story, Samantha!

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