I’m a Non-Smoker with Stage 4 Lung Cancer

as told to Nicole Audrey Spector

I was 43 years old, a teacher turned housewife of three children and in excellent physical shape. I had always been very aware of my health. Any routine screenings, like pap smears and mammograms, I did right on time and was always very in tune with my body.

So when I had a cough that wouldn’t go away, I acted quickly and went to my primary care provider (PCP). He diagnosed me with a post-viral cough. I was prescribed steroids, which eliminated the cough completely. But once I finished them, the cough came back worse than before.

My PCP was not available, so I saw another provider. He suspected I had exercise-induced asthma and told me I needed to see an allergist. I made an appointment, but they couldn’t see me for six months.

While waiting for that appointment, I knew something was really wrong. Not only did I have a terrible cough, but I also had a heaviness in my chest that reminded me of when I had had pneumonia years before. So I asked my PCP for a chest x-ray. At first he rejected my request, saying it would be a waste of time because my lungs were too clear.

But I persisted and finally my PCP (who said sarcastic things like “I’m the doctor here”) gave me one. After reviewing my x-ray, he called me to tell me I had pneumonia and prescribed antibiotics. I took them as prescribed but they made no difference. Once I was done with them, I was put on stronger antibiotics. But even once I finished, my symptoms didn’t improve.

Then I was diagnosed with antibiotic-resistant pneumonia and spent four days in the hospital, where I saw a pulmonologist. He performed a procedure called bronchoscopy to look in my lungs for any abnormalities, such as a mass, which would then be biopsied for further testing.

The pulmonologist told me that everything looked very good and that the residual pneumonia might take a while to resolve. I was told to follow up with my PCP in a week and with him, the pulmonologist, in two weeks.

A week later, I was still in horrible shape with the same constant painful cough and heaviness in my chest. I called my PCP and they told me they were not available to see me. So what did I do? I went in person and refused to leave until a nurse practitioner finally came out.

I think the nurse practitioner came out more to do a mental health check than a physical exam, but once she saw and heard me, she sent me for a chest CT scan the same day.

That night, I received a call with the news that my CT scan showed something concerning and that I needed to go to the emergency room. I ran there.

An ER doctor walked into the room we were in and turned his computer toward me. On the screen was my CT scan.

“Have you seen this?” asked. I told him no.

“Read this line,” he said.

The line said: “lytic lesions in T6 and L3; very worrying for metastatic cancer.”

I was shocked. I knew what “metastatic” meant. It meant cancer. And it meant the cancer had spread.

My mother and husband were with me while I was admitted to the hospital. I was hyperventilating and crying. All I could think about was my children and the serious possibility that they would have to grow up without a mother.

Once admitted, I had a thoracentesisa procedure to remove fluid or air from around the lungs. It was not successful. I ended up having an emergency chest tube to drain the fluid from my lungs. The fluid was analyzed and found to be cancerous. A bone biopsy revealed stage 4 non-small cell lung cancer (NSCLC).

I was so surprised that you could have knocked me down with a feather. Stage 4 lung cancer? As a young woman with no history of smoking and who had not grown up in a smoking home? Everything was bad. And so unfair.

I needed to have a biomarker test done to determine if I had a driver mutation. Biomarker testing revealed yes: EGFR exon 19 deletion, one of the most common driver mutations in NSCLC in people diagnosed with lung cancer under the age of 50.

I had another bronchoscopy. The pulmonologist who performed it saw a mass immediately and criticized the pulmonologist who had performed my first bronchoscopy, saying that this mass had been there for at least several months, possibly even a year.

The first pulmonologist had made a big mistake. The scans were done identically, but somehow he didn’t realize it. Who knows how much that cost me in terms of life expectancy?

Once the mutation was detected, I was given targeted therapy, instead of chemotherapy. That started on December 30, about four months after the cough started.

Within a few weeks of starting my treatment, I felt better. The cough disappeared and all my bone metastases healed.

But things weren’t looking very good for me. My thoracic oncologist told me I had two years to live.

Once again, all I could think about was my children.

Fortunately, I responded well to targeted therapy, which shrank my primary tumor by 70%. I underwent eight sessions of radiation to further shrink the primary tumor. My body responded favorably and after that radiation, I was told I could possibly live another five years.

And here we are. Five years later.

Leah and her family, 2024 (Photo/Jennifer Edlin Photography)

Over these last five years, I have connected with many people who have lung cancer despite never having smoked.

Last year, Lindi, another non-smoking NSCLC EGFR patient, and Bianca, a caregiver for an EGFR patient, and I met to think about how we could help others. We get a lot of messages from society and medical professionals about smoking putting you at risk for lung cancer and the importance of quitting (and that’s great information for those who smoke), but it leaves many of us out.

Up to 1 in 5 people diagnosed with lung cancer are non-smokers, and the majority of that number are women under 50 years old.

In March 2024, the three of us launched a 501(c)(3) nonprofit organization called Young Lung Cancer Initiative (YLCI). It has become a great success. We’ve taken off in ways you couldn’t imagine on social media and have been discovered by people all over the world, many of whom went through the same frustrating back-and-forth with clueless or dismissive doctors.

Through my work with YLCI, I have connected with brilliant doctors, including a surgeon who, to my pleasant surprise, approved me for a midline lobectomy and removal of the primary tumor, something I had previously been told was off limits. . I had surgery six weeks ago and I’m still recovering, but I’m fine.

My most recent chest scan showed that my lungs look good! But this does not mean that I can abandon my specific treatment. I will always need it, along with frequent scans to look for metastases.

It looks like it could be here for another five to ten years, but possibly much longer, as science continues to advance. I certainly have no plans to leave anytime soon.

I am hopeful and have no regrets. I know I did everything I could to be my own advocate. Maybe the only thing I would change, looking back, is having changed PCPs as soon as I felt disrespected by mine.

But there is nothing to do about it now. What can I do and what do To do, is to focus on helping others who know this profound struggle very well. I also put a lot of emphasis on taking care of my mental health (I happily take antidepressants) and having a sense of humor about things.

We’re all in this together, you know? And together we can make a difference not only in the lives of others, but in the entire way we view and understand lung cancer.

This educational resource was created with the support of Daiichi Sankyo and Merck.

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