When I was diagnosed with small cell lung cancer in 1992, at age 38, I remember thinking, “I wish I had breast cancer.” Breast cancer elicits such sympathy from people. A diagnosis of small cell lung cancer mainly gets you stern looks of disapproval and disappointment. There is so much stigma attached to this cancer, before anyone could ask me if I were a smoker, I would volunteer the information.
Tonie Forster, RN, PMHNP, DNP
Although I was a nurse practitioner for a long time before my diagnosis, I was in such denial about the dangers of smoking, the diagnosis came as a shock. Plus, other than feeling extremely fatigued, which I attributed to a stressful new administrative position I had recently accepted, I didn’t have any of the other warning signs of the disease.
What finally led to my diagnosis was a purified protein derivative test to assess my exposure to tuberculosis, which I was required to take every year. For 20 years, I tested negative for tuberculosis, but this time, the test was positive, and I had a follow-up chest x-ray to see if I had any marks or scars on my lungs indicating the disease. The x-ray did show a mass in the upper left quadrant of my left lung, which the pulmonologist believed was tuberculosis. I was prescribed medication but soon after had to be hospitalized to minimize my risk for complications from the disease. That decision very likely saved my life.
While in the hospital, a surgeon looked at my chest x-ray and, coupled with my smoking history, said he didn’t believe I had tuberculosis. He ordered a lung biopsy, which indicated necrotic tissue but nothing more serious. He then ordered a mediastinoscopy with biopsy to extract tissue from my mediastinal nodes to test for cancer, which found without a doubt that I had small cell lung cancer. Fortunately, the cancer had not progressed beyond my lung and mediastinal nodes. Still, the future I was facing was fraught with fear.
At my initial meeting with my surgical oncologist, he said my treatment would consist of chemotherapy and radiation therapy but not surgery. After leaving his office, I thought, the cancer must be so advanced, surgery wouldn’t help and that my prognosis was not good. I was so terrified, I immediately went back to his office for clarification. The oncologist explained that surgery is rarely used as part of the main treatment for small cell lung cancer; because the cancer was limited-stage disease (confined to the chest), I would be treated with chemotherapy and radiation therapy alone.
Although the 6 months of chemotherapy were rough, it was the 45 rounds of radiation therapy to my esophagus that nearly did me in. The treatment caused such severe esophagitis that it was difficult for me to swallow, and I survived on watermelon for months.
Even more difficult than coping with the side effects of treatment and the uncertainty of whether they would be successful in halting the cancer was seeing the look of despair on the faces of my husband and parents. For years, my husband had begged me to stop smoking, but I was too arrogant to listen. I just didn’t think smoking would give me cancer. And it was so addictive that I didn’t quit smoking until I had a definitive cancer diagnosis.
Working with a Reiki therapist and a psychotherapist, I was finally able to forgive myself for smoking, to let go of the guilt, and allow the treatments to work their magic, which they did. I have now been cancer-free for 29 years, and I’m grateful for every one of those years.
What helped me get through treatment and the fear that I would succumb to the disease was the recommendation from my oncologist to speak to a survivor of this cancer. That was such a gift to me. Talking with the survivor gave me hope that I, too, could be among the lucky 7% of patients that make it past the 5-year survival rate for small cell lung cancer.1 It inspired me to keep going during my lowest moments of hopelessness and pain.
Although I would never wish to have cancer, coming so close to dying gave me the will to live my best life. A procrastinator before my diagnosis, I finally decided to go to graduate school for a master’s degree in psychiatric nursing and then for a Doctor of Nursing Practice degree. When you have a life-threatening illness, you have a choice. You can either become completely immobilized or move forward. I chose to get on with my life.
Ultimately, I made the decision to retire from nursing. For several years, I was involved with the Phone Buddy Program of the GO2 Foundation for Lung Cancer and found the work rewarding. It is empowering for patients with small cell lung cancer to be able to talk with a long-term survivor of the disease, not only because we can offer them hope, but because we speak their language and know firsthand what they are going through.
It is not enough to tell cancer survivors to be positive. I hated it when people told me to just remain positive and everything would be okay. There are plenty of people who did everything they could to beat cancer, including maintaining a healthy attitude, and still died.
What got me through my ordeal was my faith and the incredible support I received from my loved ones. They are the heroes who dragged me out of bed when I couldn’t face another day and taught me there was more to life than cancer. And, for them and the kindness of my medical team, I give thanks every day.
1. Cancer.Net: Lung Cancer—Small Cell: Statistics. Available at www.cancer.net/cancer-types/lung-cancer-small-cell/statistics. Accessed October 18, 2021.
Dr. Forster lives in East Patchogue, on the South Shore of Long Island, New York.
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.