I Still Reflect on My Lung Cancer Treatment Decisions

Sue McCarthy received diagnoses of breast cancer in 2001 and lung cancer in 2018. Catch up on all of Sue's blogs here!

For the past six years, I’ve wondered why my primary treatment for lung cancer was cisplatin, a harsh chemotherapy, despite the fact that my PD-L1 test results were at 60%, which made me an excellent candidate for immunotherapy.

Six years ago this month, I sat in the waiting room of my hospital’s cancer center, anticipating my first appointment with my new doctor. The medical oncologist had come highly recommended by my thoracic surgeon.

I trusted my surgeon and felt comfortable with him. He had removed malignant tumors, one from each of my lungs in the summer of 2018. My non-small cell lung cancer was diagnosed as stage 3B: two tumors and eight cancerous lymph nodes, taken from my chest during the first of my two surgeries.

Despite feeling discouraged and rather negative, I sensed a bit of optimism for one reason and one reason only. My thoracic surgeon had my PD-L1 tested and the results, at 60%, indicated there was a good chance I would benefit from a checkpoint inhibitor type of immunotherapy. Not only was I happy with what my surgeon had shared with me, but I was also terrified of chemotherapy.

As I continued to wait for the doctor in an examination room, anxious thoughts bounced back and forth in my mind, from my fear of chemo to my hope in the newer cancer treatment: immunotherapy. It would use my own immune system to kill cancer cells. In my mind, there was very little doubt that immunotherapy was the better choice for me, specifically better than platinum-based chemotherapy. I was feeling good as the doctor walked in; I sensed that my oncologist would trust the PD-L1 results and choose immunotherapy as my primary treatment. However, not so! Why not? I wondered.

It was hard for me to even listen to the oncologist after he started talking about my planned chemotherapy regimen. Cisplatin and Alimta (pemetrexed disodium) were in the drug cocktail which I would receive every three weeks. My oncologist’s manner indicated that he was stressed; I sensed no compassion in his voice.

I saw myself only as a victim that day. A life-threatening cancer had taken hold of me and then a reputable oncologist had just explained to me what I must do to survive. I knew I must tell him that I had a high PD-L1 score of 60% and I did, yet he gave me no explanation for his choosing cisplatin as my primary cancer treatment. And I wondered.

Yet, in a matter of minutes, my experience changed significantly. As a new oncology patient, I needed to have blood work done, and as I waited for the phlebotomist, my doctor tapped me gently on the shoulder and quietly said, “It will be OK.” I felt relieved. He cared.

One week later, after another scan to make sure there was no change in the stage of my cancer, and a procedure to implant a port in my upper left chest, it was time to begin chemotherapy. I was called into the treatment area, this time with a much different attitude; I was absolutely ready to begin the infusion.

Resilience is a trait I’ve had many chances in life to practice — from years of family issues to earlier serious illnesses. I smiled at the kind, caring oncology nurse, but was not surprised as she read me the long list of side effects commonly suffered by patients with cancer who receive cisplatin. In anticipation of intense fatigue, nausea, diarrhea and vomiting, my husband drove us home. However, it took almost four days for me to become ill.

My chemotherapy treatment had taken place on Thursday, Sept. 6, 2018, but it wasn’t until the following Monday evening that the full force of the harsh, platinum-based chemo, went to work on my body. I felt sick — sicker than I had felt in my entire life. Maybe chemo would do me in. I was scared I wouldn’t make it. Not just physically, but mentally and emotionally. At that point, I was too sick to wonder.

Anxiety gripped me as I called the oncology office first thing Tuesday morning. I was able to get an appointment to see the doctor later that day, but the movement of the car and my sense of nausea as my husband drove toward the doctor’s office caused me to vomit before we arrived at the cancer center. I clung to my husband, enabling me to walk the short distance from the parking lot to the medical building.

The medical assistant took my vital signs, and all were fine. However, I weighed only 103 pounds, despite my height of 5 feet 6 inches. One of my oncologist’s associates examined me more thoroughly and diagnosed me with dehydration. “Drink more fluids,” he said. “You are fine. All your symptoms are normal."

Astounded to hear that, I felt a bit embarrassed but trusted the doctor and appreciated that I was not nearly as ill as I thought I might be. I knew I would get through that first round of chemotherapy. Drinking water, even sip by sip, was a priority, as was eating simple and bland food that my stomach could tolerate.

From that point forward, I did well with all my treatments, including the optional immunotherapy I received at the end of my treatment. Some would question why I continue to wonder about the immunotherapy as my primary treatment, but to me, it was completely clear: if not to help me, then to help the next patient.

I visited my daughter for the weekend soon after and while at their home I talked to my son-in-law, a PhD research microbiologist. He explained to me: PD-1 is a protein found on T cells that helps control the body’s immune response. When PD-1 is attached to another protein, PD-L1, it helps keep T cells from destroying cancer cells. The checkpoint inhibitor immunotherapy blocks PD-1 and allows T cells to kill cancer cells. Again, I understood some more, and again I wondered.

Today I saw my primary care physician for my annual exam, and when the topic of my lung cancer journey came up, he said, “That…PD-L1 score saved your life.”

I thought, but for only a moment. Then again, I wondered. Why?

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