I learned that I had advanced stage non-small cell lung cancer (NSCLC) soon after a physician in the emergency department handed me the results of a computed tomography (CT) scan, which showed that I had lesions on my L3 and L4 vertebrae. The report stated that these lesions “were highly concerning for metastatic cancer.” The information left me speechless and panic-stricken.
For months over the fall and winter of 2019, I had been plagued by a dry, nagging cough, fatigue, and weight loss. My primary care physician said I likely had a post-viral cough from an upper respiratory infection and prescribed a steroid, which provided only temporarily relief. Over the course of six more visits to my physician during which I was told maybe the cough was due to allergies, a cold, or even anxiety, I grew progressively sicker.
The coughing was becoming increasingly more violent, and I had a heaviness in my chest that caused shortness of breath. A chest X-ray confirmed pneumonia and I was prescribed an antibiotic. But soon after, I started coughing up blood, and I was hospitalized for 4 days for treatment of antibiotic-resistant pneumonia. However, after I was discharged, my symptoms continued to get worse. By now, I had lost 17 pounds, and I felt and looked terrible.
When I received the diagnosis, I remember thinking, this couldn’t be possible. I am a never-smoker, a runner, I eat a healthy diet, and I never miss appointments for my annual physical and cancer screenings. I had lived my entire life doing everything I could to prevent cancer, especially lung cancer, and I was in shock.— LEAH PHILLIPS
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I tried to see a pulmonologist and my primary care physician, but open appointments were months away. In desperation, I went to my physician’s office and refused to leave until I was seen by a health-care provider. Finally, a nurse practitioner ordered a CT scan of my upper body, and that’s when the lesions on my spine were discovered. When my physician called with the results from the test, she said I should go back to the emergency room for direct admission to the hospital, and I learned that I appeared to havelate-stage cancer.
Because of my age, I was just 43, and the fact that I am a never-smoker, the hospital physicians felt certain that I had either metastatic ovarian or breast cancer. However, a biopsy of one of the lesions on my spine determined it was stage IV NSCLC. Additional imaging discovered that the primary tumor originated in the middle lobe of my right lung, and the cancer had metastasized to my ribs, pelvis, and spine.
An oncologist who gave me the diagnosis said “You have 6 to 12 months to live. You should go home and get your affairs in order.” Another oncologist put the prognosis at 2 years.
Coming to Terms With Terminal Cancer
When I received the diagnosis, I remember thinking, this couldn’t be possible. I am a never-smoker, a runner, I eat a healthy diet, and I never miss appointments for my annual physical and cancer screenings.
I had lived my entire life doing everything I could to prevent cancer, especially lung cancer, and I was in shock. Mostly, I was thinking about my three young children, ages 14, 13, and 9 at the time, and wondering whether I would live long enough to see my oldest child graduate from high school.
Biomarker testing of the tumor found that the cancer had the epidermal growth factor receptor (EGFR) exon 19 deletion, the most common activating mutation in NSCLC.1 That finding meant that I was eligible for osimertinib, an oral, third-generation EGFR tyrosine kinase inhibitor for this cancer type.
When my oncologist called me with the finding, he said that I had won the lung cancer lottery, but it didn’t feel that way.
“Now, you have at least 2 years to live, not just 12 months,” said the doctor. I didn’t know how to respond. Two years wasn’t nearly enough time to see my oldest child graduate, much less see my youngest child get through high school.
“I’ll do whatever it takes to live longer,” I told my oncologist.
Buying More Time
Osimertinib was effective in treating the cancer, and after 9 months my health started to improve. Imaging scans showed that the primary tumor in my right lung had shrunk by 70% and the bone lesions in my ribs, pelvis, and spine had become sclerotic, possibly reflecting treated or healing bone lesions. I was no longer coughing or had any pain, and I was steadily gaining weight.
Slowly, my life returned to its normal pattern: exercising, carpooling the kids to school and to their various activities, babysitting my nieces and nephew, cooking dinner, and cleaning the house. Still, I couldn’t get that 2-year prognosis out of my head. Even if I was one of the fortunate 5% of stage IV patients with NSCLC, in 2019, who survived 5 years (that percentage has now grown to 12%),2 it wouldn’t be enough time for me to accomplish my goal to see my children graduate high school.
Because the cancer was responding so well to osimertinib, in the fall of 2020, my oncologist recommended that I undergo stereotactic body radiation therapy to destroy the remaining primary tumor in my right lung, and, hopefully, buy me more time. Four years later, I underwent a lobectomy to remove the middle lobe and the scar tissue from the radiation therapy, and I remain on a daily dose of osimertinib. Currently, there is no evidence of active disease.
Ending the Stigma of Lung Cancer
During this time, I cofounded the Young Lung Cancer Initiative (ylci.org) with the goal of raising awareness of early-onset lung cancer, especially in never-smokers, supporting survivors, and helping to end the stigma of this disease. Instead of assigning blame, we need to focus on supporting patients with lung cancer. No matter the cause, we all deserve compassion and access to the best medical care.
Getting More Years to Live
Although to the casual observer it may appear as though I’m leading a normal life, I’m not. Having cancer is never far from my mind, and the reminders, both emotional and physical, are everywhere. I take a dose of osimertinib every day, and while I’m grateful it is keeping the cancer under control, I’m plagued by its common side effects, including diarrhea and fatigue.
I have a positron emission tomography and CT scan every 12 weeks, and a magnetic resonance imaging scan of my brain every 6 months.
I know that I will not have the life span of my healthy peers, but I’m not complaining. I’m grateful to have seen not just one of my children, but two of them graduate from high school, and I’m hoping to make it to my youngest child’s graduation in 3 years.
So far, I’ve beaten all the odds. I’ve passed the 2-year and even that elusive 5-year survival mark. And I want more time. I want more years to reach all of those transformative life milestones I’ve looked forward to attaining, including seeing my children grow into happy and fulfilling adulthoods with children of their own.
I know the cancer will eventually become resistant to osimertinib, and I’ll need the next effective treatment to stay alive and the next. I’m counting on science and research for that next breakthrough that will give me those extra years.
Leah Phillips, 49, lives in Louisville, Kentucky. She is the Cofounder and Executive Director of the Young Lung Cancer Initiative.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
REFERENCES
1. Xu C-W, Lei L, Wang W-X, et al: Molecular characteristics and clinical outcomes of EGFR exon 19 C-helix deletion in non-small cell lung cancer and response to EGFR TKIs. Trans Oncol 13:100791, 2020.
2. American Cancer Society: Lung Cancer Survival Rates. Available at www.cancer.org/cancer/types/lung-cancer/detection-diagnosis-staging/survival-rates.html#:~:text=Table_title:%205%2Dyear%20relative%20survival%20rates%20for%20non%2Dsmall,%7C%205%2Dyear%20relative%20survival%20rate:%2032%25%20%7C. Accessed May 17, 2026.
