I am a non smoker with stage 4 lung cancer

As he told you Nicole Audrey Spector

I was 43 years old, a teacher turned stay at home mother of three and in great shape. I have always been very above my health. Any routine screenings like Pap smears and mammograms I did at the right time and was always very in tune with my body.

So when I came down with a cough that just wouldn’t stop, I took action quickly and went to my primary care provider (PCP). He diagnosed me with post-viral cough. I was prescribed steroids, which completely neutralized the cough. But as soon as I finished them, the cough came back worse than before.

My PCP was out of service so I saw another provider. He suspected I had exercise-induced asthma and told me I should see an allergist. I made an appointment, but they couldn’t get me for six months.

As I waited for this appointment, I knew something was wrong. Not only did I have a terrible cough, I also had a heaviness in my chest that reminded me of the time I had pneumonia years ago. So I asked my PCP for a chest x-ray. He initially denied my request, saying it would be a waste of time because my lungs were too clear.

But I persisted and eventually my PCP (who would say trivial things like “I’m the doctor here”) gave me one. After reviewing my x-ray, he called me and told me I had pneumonia and put me on 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 after they finished, there was no improvement in my symptoms.

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

My pulmonologist said everything looked great and that the residual pneumonia might take some time to resolve. I was instructed 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 painful, constant cough and heaviness in my chest. I called my PCP and was told they had no availability to see me. So what did I do? I went in person and refused to leave until a nurse finally came out.

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

That afternoon, I got a call with the news that my CT scan showed something worrisome and that I needed to go to the ER. I rushed up.

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

“Have you seen this?” he asked. I told him I hadn’t.

“Read this line,” he said.

The line said, “lytic lesions at T6 and L3. highly worrisome for metastatic cancer.”

I was in shock. I knew what “metastatic” meant. That meant cancer. And it meant cancer that had spread.

My mother and husband were with me while I was in the hospital. I was hyperventilating and in tears. All I could think about was my children and the high possibility that they would grow up without a mom.

I just admitted, I had one thoracentesisa procedure to remove fluid or air from around the lungs. It was unsuccessful. I ended up with an emergency chest tube to drain the fluid from my lungs. The fluid was tested and came back as cancerous. A bone biopsy revealed stage 4 non-small cell lung cancer (NSCLC).

I was so shocked you could have hit me with a feather. Stage 4 lung cancer? As a young woman with no smoking history and who wasn’t raised in a smoking household? It was all wrong. And so unfair.

I needed a biomarker test to see if I had a driver mutation. Biomarker testing revealed that I had: 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 did it immediately saw a mass and blasted the pulmonologist who had done my first bronchoscopy saying that this mass had been there for at least several months, possibly a year.

The first pulmonologist had made a royal breakthrough. The scans came out identical, but somehow, he missed it. Who knows what this has cost me in terms of life expectancy?

Once the mutation was identified, I was put on targeted therapy, rather than chemotherapy. This started on December 30 – about four months after the cough started.

Within weeks of starting my treatment, I felt better. Cough gone and cured all my bone metastases.

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

Again, all I could think about was my children.

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

And here we are. Five years later.

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

Over the past five years, I have connected with many people who have lung cancer even though they have never smoked.

Last year, Lindy, another non-smoking EGFR NSCLC patient, and Bianca, a caregiver of an EGFR patient, got together to think about how we could help others. We get so many 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 smokers — but it leaves a lot of us out.

Up to 1 in 5 people diagnosed with lung cancer are non-smokers and the majority of this number are women under the age of 50.

In March 2024, the three of us started a 501(c)(3) non-profit called the Young Lung Cancer Initiative (YLCI). They’ve gone gangbusters. We took off in ways I couldn’t have imagined on social media and were discovered by people all over the world, many of whom had the same frustrating experiences with clueless or dismissive doctors.

Through my work with YLCI, I was connected to great doctors, including a surgeon who, to my surprise, approved me for a medial lobectomy and removal of a primary tumor, which I had previously been told was off limits to me. I had surgery six weeks ago and I’m still recovering, but I’m doing well.

My most recent chest scan showed that my lungs look good! But that doesn’t mean I can stop my targeted therapy. I will always need it, along with frequent scans to check for metastases.

It looks like I could be here for another five to 10 years, but probably much longer as the science continues to advance. I certainly have no plans to leave anytime soon.

I am optimistic and have no regrets. I know I overcame and moved on to being my own advocate. Perhaps the only thing I would change, looking back, is to have switched PCPs as soon as I felt disrespected by my own.

But there is nothing to be done about it now. What can I do and what? do does, is to focus on helping others who know this deep struggle all too well. I also place a lot of emphasis on taking care of my mental health (I happily take anti-depressants) 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 each other’s lives, but also in the way we see and understand lung cancer.

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

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