Living a Full Life With Stage IV Non–Small Cell Lung Cancer

I have accepted that I will likely have a shortened life expectancy but have no regrets. Cancer has given me a life I never would have had.

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The discovery of my non–small cell lung cancer (NCSLC) in 2005 was serendipitous and completely unexpected. A never smoker and physically active my whole life, the only hint something might be amiss was a slight tickle in my throat, which I’m not even sure was related to my cancer diagnosis. In fact, if it hadn’t been for a physical I was required to get as part of a job offer, my cancer would probably have been found at a much later stage, and I most likely would not be here today. Instead, the tumor was spotted on my upper left lobe during a routine chest x-ray and was determined to be stage II NSCLC.

I learned much later that my cancer is RET gene–mutation positive, but 12 years ago, there was no genomic test for this mutation. After a lung resection, I was prescribed six rounds of a combination chemotherapy regimen of carboplatin and paclitaxel and told by my oncologist that, “Our goal is to keep a lid on this cancer.” Four years later, when my cancer metastasized to my liver, his words took on greater urgency, and I’ve since been enrolled in numerous clinical trials and on a variety of therapies, including bevacizumab (Avastin), additional carboplatin, pemetrexed (Alimta), nivolumab (Opdivo), and docetaxel. I’ve had several rounds of standard radiation therapy and proton beam therapy, to contain the cancer.

Being the Beneficiary of Advances in Treatment

I’ve been fortunate to be the beneficiary of excellent oncology care and the many treatment advances for my type of lung cancer, which have kept me alive for a dozen years—much longer than I expected to live—and, even more important, allowed me to maintain a high quality of life since my diagnosis. Earlier this year, however, as my cancer started to progress, I feared I had finally exhausted my treatment options, but another new therapy is giving me hope that I will be able to “keep a lid on this cancer” a while longer.

Not everyone facing late-stage cancer has the same opportunities to access the best oncology care that I have, so I don’t take my good fortune for granted.
— Melissa Crouse

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My oncologist suggested I enroll in a phase I clinical study investigating the RET inhibitor LOXO-292, and, so far, the therapy is tolerable and appears to be effective. My first computed tomography scan since I’ve started on the therapy showed tumor shrinkage in my left lung and liver. Although the news has given me renewed optimism about my future, it is tempered by the emotional whiplash that comes with living with stage IV cancer.

Taking Charge

Two years ago, I gave up my teaching career to spend more time with my children and grandchildren and to give back to the cancer community that has given so much to me. I started a lung cancer support group to help other survivors become their own best health-care advocates, and I’m an active member of the LUNGevity Foundation. I am also a consumer grant reviewer for the Department of Defense’s lung cancer research program and participate in fundraising events to support research in NSCLC. I want other survivors to have the same chance to live a high-quality life with advanced cancer as I’ve had.

Living a Purposeful Life

I know not everyone facing late-stage cancer has the same opportunities to access the best oncology care that I have, so I don’t take my good fortune for granted. If I had the choice, of course, I would not want to have an incurable disease, but in many ways, having this diagnosis has enhanced my life.

I appreciate every day and don’t waste time. Instead of dwelling on what cancer has taken from me, I choose to focus on what it has given me: a more purposeful and directed life. I have become more patient and tolerant since my diagnosis and learned to keep a perspective on the day-to-day inconveniences and annoyances that can increase stress. I cherish the time I spend with my family and friends and the work I’m doing as a patient advocate, and I’m more loving and kind.

Most of all, I have no regrets. Cancer has given me a life I never would have had. ■

Ms. Crouse is a retired music teacher and lives in Fort Myers, Florida. In 2015, she won an Emmy for a documentary about her life with cancer.

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.