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.

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.

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.”

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.”

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.

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.

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.

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.

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.

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.

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.

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?”

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.

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.