My name is Stephanie Williams. I live in Harrisburg with my husband and our daughter, who is nine years old and about to start third grade. My husband and I are originally from Ohio, and we moved to Pennsylvania around 2014. We have been here ever since.
The spring of 2021 felt hopeful because things were starting to improve after the pandemic had weighed heavily on everyone. My daughter was about five then and really coming into her own. We were doing more together, and that summer was especially fun as she prepared to start kindergarten in the fall. We were enjoying life without strict schedules. Around that same time, I noticed a mild, intermittent cough. I brushed it off for months, assuming it was allergies, humidity, or pollen.
At a routine yearly appointment with my general practitioner, I mentioned the cough. She suggested possible causes like acid reflux, allergies, or asthma and offered medications to test those possibilities. I asked if we could do a chest X-ray just to be sure, thinking maybe I had an asymptomatic illness with lingering effects. She agreed and sent me down the hall for imaging. The next morning she called to say a mass had appeared on the X-ray.
I had actually seen something unusual myself while the technician was taking the image. On the monitor, I noticed a cloudy oval shape on my right side but didn’t fully process it. That night at dinner I mentioned it to my husband, but it seemed so unlikely that we didn’t dwell on it. The following morning, my doctor ordered a CT scan immediately and asked me to stay at the facility until it was read. That was when I started to sense something serious was going on.
While I sat in the waiting room, my doctor called to say the mass was large and spiculated, meaning it had spiky edges. I knew that irregular borders can be concerning. She continued reading the report and said it was highly suspicious for neoplasm. At that point I understood we were likely dealing with cancer.
When I got home, my in-laws were there with my husband and daughter finishing dinner. I had called my husband on the way home and cried a little, then sat quietly at the table eating cold pizza crust while everyone else tried to process the news gently. It felt surreal watching my family try to understand what might be happening.
Within about two weeks, a surgeon scheduled a biopsy using a bronchoscopy to sample lymph nodes and the tumor. Physically, recovery from the procedure was minor, but emotionally I checked the patient portal constantly as results came in. Tests ruled out infections and other possibilities. Then a few days later, the surgeon called and told me it was cancer. He explained the next steps would include scans, tests, and a tumor board review. When I asked what type, he said adenocarcinoma.
After more testing, he explained the plan was surgery to remove part of my lung. Because the tumor was about five centimeters, he expected to perform an open thoracotomy rather than a minimally invasive approach. My mom came from Ohio to support me and drove me to the hospital early the morning of surgery. When I woke up in ICU, she told me they had removed two lobes instead of one because the tumor was positioned between them.
Recovery in the hospital was difficult. I had a chest tube, catheter, IV lines, monitors, and lingering effects from anesthesia. Eventually those were removed, but regaining normal bodily function took time. When the surgeon came in with pathology results, he explained that all twelve lymph nodes they removed were negative and margins were clear. The cancer appeared contained, and I was staged at 2B after surgery.
About a month later, I met an oncologist who told me my tumor was ALK-positive, meaning it contained a specific genetic mutation. This mutation occurs only in the tumor cells, not throughout the body. It is found in about 4% of lung cancer patients and is more common in younger people and those with no smoking history. Because of that biomarker, targeted therapy could be effective.
I underwent four rounds of chemotherapy through a port placed to protect my veins. During my first treatment, I had a frightening reaction—likely to an anti-nausea medication—which caused coughing and a throat-closing sensation. It passed, and the nurses adjusted my medications. Still, chemotherapy was exhausting. I felt fatigued for days, had ringing ears, brain fog, and visual disturbances. It was hard knowing I had to repeat it several more times.
Between surgery and chemo, I sought a second opinion from a specialist experienced with ALK-positive cases. He suggested targeted therapy, typically used for stage four patients, might help prevent recurrence even in earlier stages. New research indicated potential benefit. He recommended taking it for several years. My local oncologist agreed, and insurance approved the medication. I started it about a month after finishing chemotherapy.
It has now been nearly three years since my diagnosis. My scans have been clear, and my bloodwork has been good. I hesitate to say I am cured because I am still on medication and still cautious. The original plan was to take the therapy for three years, but since I tolerate it well, my doctor may keep me on it longer.
I have a daughter I don’t want to leave without a mother. If there is anything that can improve my chances of staying here for her childhood, I will do it. That is my motivation. Before my diagnosis, I used to think I would fight endlessly if I ever had cancer. During chemotherapy, feeling how hard it was on my body, I understood why some people choose not to continue treatment. I didn’t reach that point because of my family, but I now understand that perspective.
My advice to others is to learn your biomarker status, seek a second opinion from a specialist who focuses on it, and join a support group. People in those communities often know which doctors and researchers specialize in specific mutations and can help guide you to the best information and care.
