In 2022, I had a computed tomography (CT) coronary calcium scan to see whether there were any signs of narrowing or blockage in my heart arteries. Heart disease runs in my family. My father died of a heart attack the year before, and I worried that I was at risk for the same fate. It was a complete shock, then, to get the test results showing that although my heart was free of coronary disease, I had two small, suspicious-looking nodules in my right lung: one located in the middle lobe, about 1.5 mm, and a smaller nodule situated in the upper part of the lower lobe.
Daniel West
A biopsy of the larger nodule tested positive for non–small cell lung cancer (NSCLC), and a feeling of guilt immediately set in. I had been a light smoker for a number of years but had quit smoking more than 15 years prior to the diagnosis, so hearing I had lung cancer still came as a surprise. It also came with stigma.
The first questions people often ask me when they learn I was diagnosed with lung cancer is “Was I a smoker?” or “Did you smoke?” Focusing on the potential cause of the cancer or assigning blame rather than providing empathy or support is unproductive. The bottom line is anyone with lungs can get lung cancer. All patients, regardless of the risk factors for their disease or their existing health conditions, deserve access to treatment as well as comprehensive support and care.
Making Long-Term Decisions
After getting a second opinion at The University of Texas MD Anderson Cancer Center in Houston, it was decided that the best course of treatment was a lobectomy of my middle right lobe. During the surgery, my oncologist also removed 15 lymph nodes near the site, 3 of which tested positive for cancer. My cancer was staged as IIB.
I was prescribed four rounds of adjuvant cisplatin and pemetrexed chemotherapy; I immediately encountered serious side effects, including neuropathy in my extremities, sciatica, stomach ulcers, and a life-threatening deep vein thrombosis in my left leg. A switch in my chemotherapy regimen from cisplatin and pemetrexed to carboplatin and pemetrexed was successful in reducing the severity of treatment side effects. However, a few months after completing chemotherapy, I developed multiple pulmonary embolisms that landed me in the hospital for several days. In some ways, that experience was more traumatic than getting the cancer diagnosis. Fortunately, there was no long-term injury, although the problem necessitated my being on blood thinners for an extended time.
A biomarker test of the removed nodule found it positive for the EGFR exon 19 deletion mutation. I have been receiving the EGFR tyrosine kinase inhibitor osimertinib since 2023.
My oncologist told me that patients usually remain on maintenance osimertinib for 3 years but can opt to stay on the medication longer. I am not sure what I will do. Although I do not like the idea of being on a potent drug indefinitely, I am reluctant to stop a therapy that may be keeping the cancer from recurring.
Maintaining a High-Quality Life After Cancer
Although my surgical oncologist was unable to remove the smaller nodule in my lower right lobe, it has not gotten larger and remains stable. I continue to have imaging scans every 3 months to closely monitor any signs of potential recurrence, and, so far, I have no evidence of active disease.
The cancer diagnosis has made me more aware of the importance of maintaining a healthy lifestyle. I am exercising more and eating nutritious meals, and I am at my optimal body weight. Except for occasional fatigue, ongoing muscle cramps, and skin irritations, which are common side effects of osimertinib, I generally feel well and live a high-quality life.
Going Through a Life-Altering Experience
As a gay man, what was most important to me during my treatment decision-making process was being able to trust my medical team and having my husband, John, included in all our medical discussions. Knowing we were accepted as a family—the way any heterosexual couple would be—made a big difference in going through this difficult time.
Even though it has been nearly 3 years since my NSCLC diagnosis, I still get emotional thinking about how much hearing the words “You have cancer” have altered my life. Although my quarterly imaging scans continue to show no evidence of disease, having a potentially life-threatening cancer has made me more cognizant of my mortality, and I am even more appreciative of my life with John and of the love of our family and friends.
Getting this diagnosis has also made me a more empathetic person, especially toward those going through a similar experience. I have become an active member of the LUNGevity Foundation (https://www.lungevity.org) and participate in a support group, helping other lung cancer survivors in their journey.
At age 54, I’m still a relatively young man, with hopefully many more decades ahead, but having cancer has heightened my awareness of the passage of time, and I try to live more in the present. My priorities include maintaining my health, living life to the fullest, and inspiring other cancer survivors to do the same.
Mr. West, 54, lives in Houston, Texas.
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.
