Lung Cancer Survivor

Stage is Just a Number

Until Linnea Olson was diagnosed in 2005, she never dreamed she’d be up for the challenge of living with Stage IV non-small cell lung cancer. But, after years of many traditional treatments and clinical trials, she has a firm handle on collaborating with her skilled medical team and maintaining an incredibly resilient outlook. Now she’s not only surviving, she’s thriving.

 

In April 2005, I had pneumonia that wouldn’t respond to antibiotics. My doctor ordered a CT scan, and I was floored when it revealed I had non-small cell lung cancer (NSCLC). I didn’t know that non-smokers were at risk for lung cancer.

I immediately sought care at a renowned cancer center. The cancer was staged as IB, BAC, mucinous—now called invasive mucinous adenocarcinoma. Knowing I would find bad news, my oncologist told me to stay off the Internet, but I went online anyway. It was discouraging, but I prefer to know my enemy.

I had a lower left lobectomy followed by four rounds of adjuvant chemotherapy. My tumor was also tested for EGFR, but the test came back negative. At my first scan after chemotherapy, I already had a new nodule. With no viable treatment options, both lungs filled with more than two dozen nodules. In summer 2008, another biopsy confirmed metastatic spread. My oncologist restaged my cancer to Stage IV and advised that I had three to five months to live.

As a last-ditch effort, I went on a targeted therapy for two months. Then my biopsy came back positive for an ALK mutation, and I enrolled in a phase I clinical trial targeting ALK mutations that fall. Through the trial, I became the fourth person in the world with NSCLC to participate. Three years later, I entered another phase I clinical trial, this time for a different drug. After 18 months, I returned to chemotherapy. Six months later, I asked for a break from treatment. In spring 2014, I returned to my first trial drug for several months before entering a phase 1 clinical trial, for a new therapy. Eleven years after diagnosis, I am now in my longest period of stability yet.

I am fortunate to have had two cutting-edge oncologists. When I was diagnosed, testing for EGFR was hardly the norm. I was tested for ALK in 2008, shortly after that mutation was first identified as a driver in NSCLC. My strategy has always been about buying time. When I was diagnosed, my youngest child was seven. In a few weeks, I will watch him graduate from high school—an experience I never thought I'd have.

I have undergone a lot of treatments. I have enormous respect for my body because of how it has bounced back. Then again, I work hard to be both physically and mentally resilient. Currently, I have no side effects from my cancer but am seeing a physical therapist for neuropathy and a neuro-oncologist for cognitive challenges, both caused by treatment. I am focusing not just on surviving, but on thriving.

At one low point, I would lie on the couch and repeat to myself, “You are the strongest person alive.” I kept telling myself that I could get through this, and I used a lot of positive visualization.

People in our community were fabulous. One friend arranged for three months of meals while I was going through chemotherapy. Because we moved two years after my diagnosis, I was really on my own when I started my first clinical trial. Although my husband (we are now divorced) was not as supportive as I would have liked, my incredible medical team and my social worker got me through it. I still see the social worker every three weeks, and I can’t say enough about how she has helped me cope.

I am so much stronger than I ever imagined. Before cancer, I would often say “I can’t.” Now, I know I can do anything. I really feel that confident.

The best advice I received came from my original oncologist and was more a gentle nudge in a different direction than advice. I was focused on a cure, and when it became apparent that I would have to live with my cancer, he told me about outliers—those people who were way on the end of a statistical curve. I shifted my focus to being an outlier. Now, at 11 years of survival, I am one.

Each of us is exceptional. Your stage is just a number. This is not going to be easy, but it is doable. Focus on that far end of the curve, and tell yourself you like a challenge. You can do this.

 

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