Until 3 years ago, cancer was so utterly frightening to me that I avoided discussing the disease or even mentioning the word as much as possible. I sympathized with a friend when she was diagnosed with lung cancer, but I never expected to be in her position. I’m a never-smoker, and except for a mild nagging cough I began experiencing in 2022, I’ve been in relatively good health for most of my life. But something about that cough convinced me to get to the bottom of its cause.
Having cancer is stressful enough. Patients shouldn’t also have to worry about how to pay to survive the disease.— ELIZABETH STEPHENSON
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I made an appointment with my primary care physician and insisted that he order a chest x-ray just to put my mind at ease. I’ll be laughing all the way home when the test is negative for any lung disease, I remember thinking. But minutes later, I wasn’t laughing. The doctor said the test spotted a suspicious mass on my left lung, and he immediately ordered a computed tomography scan. An hour later, I got the news I had dreaded all my life: I had cancer. A bronchoscopy later confirmed I had non–small cell adenocarcinoma, although the stage of the disease at that point was unclear.
Hearing the words “You have cancer” is a surreal experience, especially for someone like me, who has been so terrified of the disease. All I remember thinking after I got the diagnosis is that I don’t want to die. And I vowed to do whatever it took to stay alive.
Coping With the Fear of a Cancer Recurrence
The first surgeon I met with suggested I have platinum-based chemotherapy first and then surgery to remove the tumor, but I felt uneasy about that approach and sought another opinion. The second surgical oncologist I consulted recommended removing my upper left lobe, followed by a short course of chemotherapy and then proton radiation therapy, and that treatment plan sounded more agreeable to me.
During the surgery, my surgeon found that the cancer had reached the pleura and spread to several nearby lymph nodes, but fortunately it had not penetrated my right lung. Still, the diagnosis was serious: stage IIIA non–small cell lung cancer. Genomic testing of the tumor determined that it was PD-L1–positive and in addition to the chemotherapy and radiation I received, I was also prescribed a year-long course of the monoclonal antibody immunotherapy atezolizumab.
I wouldn’t say that undergoing the combination of therapies I received was pleasant, and there were definitely difficult days, but 2 years later, I have regained my precancer energy level and feel like myself. Best of all, I have no evidence of disease. However, my concern and fear about having cancer is still with me, although it’s now centered around possible recurrence and how to pay for my continuing cost of care.
Paying for Care
I’m a small business owner and have been relying on health insurance purchased through the Affordable Care Act Health Insurance Marketplaces, and I’m terrified that federal cuts impacting this program will jeopardize my ability to pay for my continuing cancer care. Although I have completed therapy, I still have ongoing out-of-pocket costs from my quarterly imaging scans and other tests to monitor for cancer recurrence. I’m actually still carrying more than $5,000 in medical debt from the cost of the atezolizumab I completed a year ago, as well as travel expenses to and from the cancer center.
A friend of mine set up a GoFundMe page while I was undergoing treatment to help defray some of the costs of my medical care. Is this what we have to do now when we are diagnosed with a life-threatening disease like cancer, plead for donations to pay for care?
I was 61 when I was diagnosed with cancer. My husband and I have saved throughout our careers to ensure financial security during our retirement, but cancer has changed our financial picture and imperiled our plans for the future. With the additional threat of not being able to have affordable health insurance, I’m not sure how we will be able to pay for my care should the cancer recur or should we be faced with another serious illness.
I’m grateful to my oncology team for getting me to remission, but I can’t shake the anxiety I feel about a cancer recurrence. My fear of a cancer recurrence is matched only by my concern over whether federal budget cuts will take away my ability to pay for health care. Having cancer is stressful enough. Patients shouldn’t also have to worry about how to pay to survive the disease.
Ms. Stephenson, 64, lives in State College, Pennsylvania.
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.
