Why Question Cancer?

What does it mean to question cancer? I would like to share my story about obtaining a second opinion at The University of Kansas Cancer Center. Before my own diagnosis, my only experience with cancer had been as a caregiver to my mother who was in her 70s. Then something unexpected happened in September 2018. I was diagnosed with stage IV ALK-positive non-small cell lung cancer at the age of 51. As a never-smoker, the pathway to diagnosis was a long one consisting of multiple visits to primary care physicians, allergists and pulmonologists. Each physician had a different diagnosis and a different treatment plan, each with the expectation of resolving a progressively worsening cough.

The month prior to my cancer diagnosis, I couldn’t speak a full sentence without heaving coughing spasms. Two chest x-rays revealed an atypical pneumonia and some broken ribs. The doctors were stumped and I was referred to another specialist in infectious disease.  After a dozen appointments with three different physicians, a nurse practitioner ordered a CT scan and directed me to the nearest emergency room. She suspected I had a pulmonary embolism. At this point, I had lost count of the number of suspected diagnoses.

As we entered the Emergency Department, I wasn’t overly worried, thinking I would receive fluids and antibiotics and be on my way home within a few hours. When the physician entered the room, there were a lot of words mentioned, but the only phrase I remember was “abnormal CT scan”. With a suspected viral or fungal infection, I was admitted. As the viral studies came back negative over a 24-hour period, the first pulmonologist ordered a scope of my lungs called a bronchoscopy. However, the next day another pulmonologist canceled the procedure and ordered a biopsy for the following morning. The only thing I could think of at the time was, “Gosh, I’m really hungry, when can I eat?” My food had been held for almost 24 hours in anticipation of the bronchoscopy. I was told a biopsy would be the fastest way to identify a rare fungal infection.

My husband asked the hard question: Could this be cancer? It wasn’t on the top of anyone’s mind. I was a never-smoker, had no family history of lung cancer and my house had a radon remediation system. The doctors were still pursuing a fungal infection diagnosis. Even the interventional radiologist said they didn’t think it was cancer and believed I’d aspirated during a coughing fit. I blurted out, “you guys have no idea what you’re dealing with.” I am from New Jersey so sometimes my verbal filters don’t work that well, especially when I am hungry.

After a successful tissue biopsy, I wanted to go home. I was receiving intravenous fluids, antibiotics and an antacid. Nothing was helping and each day I felt worse. I saw no point in remaining in the hospital to just wait for CT results. So I convinced the hospital team to let me go home and take the medications orally. I threw out the antacid, knowing there was no way I could have acid reflux disease.

Exactly 48 hours later, the phone call came. The pulmonologist said the ominous words, “you have adenocarcinoma, lung type”. I wasn’t exactly sure what that meant but it didn’t sound good. In a way, I was relieved because we were finally getting to the bottom of this horrible cough.

We went to see the pulmonologist a few hours later where he indicated I had lung cancer, probably stage III. He would organize a referral to an oncologist and recommended a course of chemotherapy. We were in shock. I began to sob. I asked about a second opinion. The pulmonologist asked me where I would like to be treated. In my mind, the only place to go when facing a life-threatening disease was The University of Kansas Cancer Center. The pulmonologist contacted a nurse navigator at KU cancer center who made all the arrangements for me to be seen by an oncologist within a week. My KU Cancer Center oncologist discovered I had a very rare mutation that affects about three percent of lung cancers. Rather than a course of chemotherapy, I started a targeted therapy where I take six pills a day. What could have been an imminently terminal disease turned out to be a treatable condition. My cough resolved immediately after one dose of therapy and I got the first full night of sleep in four months.

Do not worry about what the doctor thinks when you want a second opinion. It didn’t mean I was offending a doctor or even questioning their expertise. I have since learned that my lung cancer diagnosis and subsequent treatment is complicated. Without the second opinion, my clinical outcome would have been much different.

There have been more advances in lung cancer treatments in the last three years than in the last thirty years. It is not possible for a general medical oncologist in the community to stay abreast of the rapidly emerging scientific developments. Bottom line: Getting a second opinion at an NCI-designated cancer center saved my life. It could save yours, too.