As told to Nicole Audrey Spector
I was 43 years old, a teacher turned stay-at-home mom of three and in great physical shape. I had always been super on top of my health. Any routine screenings, like Pap tests and mammograms, I had right on time, and I was always very in tune with my body.
So, when I came down with a cough that just wouldn’t quit, I took action fast and went to my primary care provider (PCP). She diagnosed me with a post-viral cough. I was prescribed steroids, which knocked out the cough completely. But once I finished them, the cough came back worse than before.
My PCP was out, 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 get me in for six months.
As I waited for that appointment, I knew something was really wrong. Not only did I have a terrible cough, I also had a heaviness in my chest that reminded me of when I’d had pneumonia years prior. So I asked my PCP for a chest X-ray. Initially he refused my request, saying it would be a waste of time because my lungs were too clear.
But I insisted and finally my PCP (who would say snide things like, “I’m the doctor here,”) gave me one. After reviewing my X-ray, he called to say 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 once those were finished, there was no improvement in my symptoms.
I was then diagnosed with antibiotic-resistant pneumonia, and spent four days in the hospital, where I saw a pulmonologist. He performed a procedure called a bronchoscopy to look in my lungs for any abnormalities like a mass, which would then be biopsied for further testing.
The pulmonologist told me that everything looked great and that residual pneumonia could take a while 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 they said they had no availability to see me. So what did I do? I went in person and refused to leave until, eventually, a nurse practitioner came out.
I think the nurse practitioner came out more to conduct a mental health check than a physical exam — but once she saw and listened to me, she sent me out for a same-day chest CT scan.
That evening, I got a call with the news that my CT scan showed something concerning and that I needed to go to the ER. I rushed over.
An ER doctor came into the room we were in and turned his computer toward me. On the screen was my CT scan.
“Have you seen this?” he asked. I told him I had not.
“Read this line,” he said.
The line said, “lytic lesions on T6 and L3; highly concerning for metastatic cancer.”
I was in shock. I knew what “metastatic” meant. It meant cancer. And it meant cancer that had spread.
My mother and husband were with me as I was being admitted to the hospital. I was hyperventilating and in tears. All I could think of were my kids and the grave possibility of them having to grow up without a mom.
Once admitted, I had a thoracentesis, a procedure to remove fluid or air from around the lungs. It was unsuccessful. I wound up with an emergency chest tube to drain fluid off 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 knocked me over 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? It was all wrong. And so unfair.
I needed a biomarker testing done to determine whether I had a driver mutation. The biomarker testing revealed that I did: 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 blasted the pulmonologist who’d done my first bronchoscopy, saying that this mass had been there for at least several months, possibly even a year.
The first pulmonologist had royally screwed up. The scans were performed identically, yet somehow, he missed it. Who knows what that cost me in terms of life expectancy?
Once the mutation was detected, I was put on a targeted therapy, rather than chemotherapy. That started on December 30 – about four months after the cough began.
Within a few weeks of starting my treatment, I felt better. The cough went away and it healed all my bone metastases.
But things weren’t looking great for me. My thoracic oncologist told me I had two years to live.
Again, all I could think about were my kids.
Fortunately, I responded well to the 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 family, 2024 (Photo/Jennifer Edlin Photography)
Over these past five years, I’ve connected with a lot of people who have lung cancer despite having never smoked.
Last year, Lindi, another non-smoking EGFR NSCLC patient and Bianca, a caregiver to an EGFR patient, and I got together to think about how we could help others. We get so much messaging from society and medical professionals about smoking putting you at risk for lung cancer and the importance of quitting smoking — and that is great information for those that smoke — but it leaves a lot of us out.
As many as 1 in 5 people diagnosed with lung cancer are non-smokers, and the majority of that number are women under 50.
In March 2024, the three of us launched a 501(c)(3) nonprofit organization called Young Lung Cancer Initiative (YLCI). It’s gone gangbusters. We’ve taken off in ways I couldn’t imagine on social media and have been discovered by folks around the world, many of whom went through the same frustrating runarounds with clueless or dismissive doctors.
Through my work with YLCI, I’ve connected with brilliant doctors, including a surgeon who, to my delighted surprise, approved me for a middle lobectomy and primary tumor removal, something I was previously told was off limits for me. I underwent surgery six weeks ago and am still recovering, but doing well.
My most recent chest scan showed that my lungs look good! But this doesn’t mean I can go off my targeted treatment. I will always need that, along with frequent scans to check for metastases.
It’s looking like I could be here for another five to 10 years, but possibly much longer, as science continues to advance. I certainly have no plans of leaving anytime soon.
I’m hopeful and I have no regrets. I know that I went above and beyond in 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 mine.
But there’s nothing to be done about that now. What I can do, and what I do do, is focus on helping others who know this profound struggle all too well. I also put great emphasis on tending to my mental health (I gladly 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 just in one another’s lives, but in the entire way we see and understand lung cancer.
This educational resource was created with support from Daiichi Sankyo and Merck.
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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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