As told to Nicole Audrey Spector
I was 43 years old, a teacher, mother of three and in excellent physical shape. I have always taken great care of my health. I had all routine exams, such as Pap tests and mammograms, on time and I was always very in tune with my body.
So when I developed a cough that just wouldn’t stop, I acted quickly and went to my GP. She diagnosed me with a post-viral cough. I was prescribed steroids which completely eliminated the cough. But when I finished it, the cough came back worse than before.
My PCP was down so I went to 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 accommodate me for six months.
As I waited for this 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 the time I had pneumonia years ago. So I asked my GP for a chest x-ray. At first he refused my request, saying it would be a waste of time because my lungs were too clear.
But I persisted and eventually my GP (who said derogatory 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 prescribed antibiotics. I took them as prescribed but they made no difference. When I was done, I was given stronger antibiotics. But even when these were finished, there was no improvement in my symptoms.
Then I was diagnosed with antibiotic-resistant pneumonia and spent four days in the hospital seeing a pulmonologist. He performed what is called a bronchoscopy to look for abnormalities in my lungs, such as a mass, which was then biopsied for further testing.
The pulmonologist told me that everything looked good and that it might take a while for the remaining pneumonia to clear up. I was instructed to see my family doctor in a week and him, the pulmonologist, in two weeks.
A week later I was still in terrible shape and had the same painful, constant cough and heaviness in my chest. I called my GP and he told me he didn’t have time to see me. So what did I do? I went in person and refused to leave until a nurse finally came out.
I believe the nurse came to me to do a mental health check rather than a physical exam – but after seeing me and listening to me, she sent me for a chest CT scan that same day.
That evening I received a call saying that my CT scan showed something concerning and that I needed to go to the emergency room. I rushed over.
An emergency doctor came into the room we were in and turned his computer toward me. My CT scan was visible on the screen.
“Did you see that?” he asked. I told him I didn’t do it.
“Read this line,” he said.
The line read: “lytic lesions on T6 and L3; extremely concerning for metastatic cancer.”
I was shocked. I knew what “metastatic” meant. It meant cancer. And it meant cancer had spread.
My mother and husband were with me when I was admitted to the hospital. I hyperventilated and cried. All I could think about was my children and the serious possibility that they would have to grow up without a mother.
After admission, I underwent a thoracentesis, a procedure to remove fluid or air from around the lungs. It was unsuccessful. I ended up having an emergency chest tube placed to drain fluid from my lungs. The fluid was tested and found to be cancerous. A bone biopsy revealed stage 4 non-small cell lung cancer (NSCLC).
I was so shocked that you could have knocked me over with a feather. Stage 4 lung cancer? As a young woman who has never smoked and did not grow up in a smoking household? It was all wrong. And so unfair.
I had to have a biomarker test done to determine if I had a driver mutation. The biomarker testing revealed the following: 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 this immediately saw a mass and blasted the pulmonologist who performed my first bronchoscopy by saying that this mass had been there for at least several months, possibly even a year.
The first pulmonologist had made huge mistakes. The scans were done the same way, but somehow he missed it. Who knows what it cost me in terms of life expectancy?
After the mutation was discovered, I underwent targeted therapy instead of chemotherapy. This started on December 30th – 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 didn’t look good to me. My thoracic oncologist told me I had two years to live.
Here too, all I could think about was my children.
Fortunately, I responded well to the targeted therapy, causing my primary tumor to shrink by 70%. I underwent eight sessions of radiation to further shrink the primary tumor. My body responded positively and after radiation I was told I could potentially live another five years.
And here we are. Five years later.
Leah and family, 2024 (Photo/Jennifer Edlin Photography)
Over the last five years I have been in contact with many people who have lung cancer even though they have never smoked.
Last year, Lindi, another non-smoking EGFR NSCLC patient, and Bianca, the caregiver of an EGFR patient, and I came together to think about how we could help others. We get so many messages from society and medical professionals about how smoking is a risk for lung cancer and how important it is to quit smoking – and that’s great information for those who smoke – but it leaves many of us out .
Up to one in five people diagnosed with lung cancer are non-smokers, and the majority of these are women under 50.
In March 2024, the three of us founded a 501(c)(3) nonprofit organization called the Young Lung Cancer Initiative (YLCI). It’s 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 have gone through the same frustrating detours with clueless or dismissive doctors.
Through my work with YLCI, I have made contact with excellent physicians, including a surgeon who, to my happy surprise, approved me for a median lobectomy and removal of a primary tumor, something I had previously been told would be necessary me was taboo. I had surgery six weeks ago and am still recovering but doing well.
My last chest scan showed that my lungs looked good! But that doesn’t mean I can stop my targeted treatment. I will always need this, along with frequent scans to check for metastases.
It looks like I could be here for another five to ten years, but possibly much longer as science continues to advance. I definitely don’t plan on leaving any time soon.
I am hopeful and have no regrets. I know I have done my best to be my own advocate. The only thing I might change, looking back, would be to change PCP as soon as I felt disrespected by my colleague.
But nothing can be changed about that now. What I can and do do is focus on helping others who know this profound struggle all too well. I also make it a priority to take care of my mental health (I like to take antidepressants) and have a sense of humor.
We’re all in this together, you know? And together, we can make a difference not just in each other’s lives, but in the entire way we view and understand lung cancer.
This educational resource was created with support from Daiichi Sankyo and Merck.
Do you have any real women, real stories of your own that you would like to share? Let us know.
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.
From your website articles
Related articles on the Internet