By Wendy Brooks, as told to K.J. Bannan
I wasn't surprised when I was diagnosed with small-cell lung cancer in July 2023. I had been doing yearly low-dose lung cancer screening CT scans because my father was diagnosed with SCLC, and I knew I had many other risk factors, too. There were a lot of strikes against me, so I was almost expecting the news when it came.
SCLC is a rare disease that only affects about 13% of the estimated 229,000 people who are diagnosed with lung cancer each year.
I was 58 at the time of my diagnosis and already retired from my career as a construction inspector with the Missouri Department of Transportation – which was one of the factors I knew put me at risk. I spent my life testing roadway construction materials and other products used for installing highways and bridges. That exposed me to silica dust, in particular, which is a carcinogen for lung cancer.
I was also exposed to secondhand smoke as a child from my father, and I was also a smoker myself for more than 20 years. Still, I know I was lucky getting diagnosed so early, since, at the time of diagnosis, I didn't have a single symptom of the disease.
Typically, you can get preventive lung cancer screening that is usually covered by insurance if you meet certain criteria. Right now, the United States Preventive Services Task Force recommends that anyone who is between the ages of 50 and 80 years old, is a smoker, and has at least a 20 pack-year smoking history can get screening. People who have a 20 pack-year smoking history but have quit within the past 15 years also qualify. A pack-year is smoking an average of one pack a day for one year. So if you've smoked two packs a day for 10 years, you also qualify.
Back in 2017, the guidelines were different. You had to be 55 with a 30 pack-year history. I was only 51 and didn't qualify under the pack-year guidelines, but my primary care doctor was adamant. Knowing my family and exposure history, they wanted me to start earlier. The hospital had recently gotten a grant, so even though my insurance didn't cover it, the scan didn't cost anything out-of-pocket. I know how lucky I am to have been enrolled in that program.
Getting the News
In 2023, after having normal scans for six years, the doctors saw something on the CT scan. It was so small at that time that the doctor said it didn't meet the criteria for further investigation. They told me to follow up in three months. When I did a follow-up scan, the tiny spot had increased dramatically. It wasn't tiny anymore! I was immediately scheduled for a biopsy. It had grown so much that they told me it was cancer unless proven otherwise.
My husband was so upset when I got off the phone with my doctor and got the diagnosis. I told him, 'This is exactly why we test, because if we catch it early, we have a much better chance of cure than waiting until symptoms start.'
Starting Treatment
My daughter is a physician's assistant at the local university hospital where I ended up being treated, so she was my next call. She and my primary care doctor were wonderful. They told me what I needed to do to get started with treatment. I would need a bronchoscopy so the doctor could get a sample of the tumor for a biopsy.
I would also need an MRI of my brain because that's one of the most common places that SCLC metastasizes to, and I'd need to get an appointment with an oncologist, a doctor who treats cancer with drugs. We did all that, and the news was exactly what they expected: I had limited-stage small-cell lung cancer. It had not spread beyond the lung, so that was good news. I could start treating it. I got the initial call on July 7, and by July 27, I was meeting with my new oncologist. Because it was limited-stage, the doctor told me, 'We're treating to cure.' That's all I needed to hear to have hope. I said, 'I'm a unicorn, and I'm going to beat this.' He asked me if I was ready to get started that day, and when I said yes, he walked me across the hall to start chemotherapy.
My first treatment was carboplatin and etoposide. I had four rounds of that, or 12 total infusions. During my second round, they introduced radiation. I had 30 doses of radiation to my upper left lung. They did offer me, at the time, prophylactic cranial radiation, but I opted to go on MRI surveillance every three months instead. Immunotherapy was not part of the standard of care for limited SCLC back then like it is now.
Checking for Progression
At my first three-month scan after my treatments, the doctor didn't see any evidence of disease in my lung, but I did have a metastasis in my brain. I was wrecked and second-guessing myself. I asked my doctor if I did it to myself by not doing the prophylactic cranial radiation, but he told me no, it wasn't my fault. He started me immediately on radiation to my brain. We did a Gamma Knife radiation surgery treatment, which uses very precise radiation to treat the tumor without hurting the healthy brain tissue around it.
After the Gamma Knife treatment, they changed my scans to every two months. Two months later, the tumor was back in my lung. At that point, I had been doing a lot of my own research, spending time in online patient support groups, so I told my doctor that I didn't want to just stick with standard-of-care options. I wanted to be aggressive. I had read about an immunotherapy trial that was having great success called tarlatamab. It was still in trials, though, and had not been approved by the FDA. I was pushing for that, though. My doctor told me that there was no room in the study for me at my hospital but offered me another trial drug that he said worked as well if not better than tarlatamab. He told me I'd be a great candidate for it – an antibody-drug conjugate. In April 2024, I went into that trial and had amazing results. We had a 70% reduction of the tumor, so I stayed on it from April until December 2024.
I had some side effects from the treatment, including low hemoglobin, so I got regular blood transfusions. But otherwise, I felt great. I had an MRI and I still had some cancer in my lungs, so my doctor said it was time to pivot. It was May 2024, and by that time, tarlatamab had been FDA-approved. But he wanted me to try something different that's being studied as part of a new drug class, like tarlatamab – drugs called bispecific T-cell engagers. The medicine would use my own immune system against the cancer. I've been on that drug since May 2024 and have been doing well.
My Outlook Now
Living with SCLC is a roller coaster. At my last scan, it looked like my tumor was starting to get some volume again, so my doctor is starting another round of radiation. I should get another 15 doses. We're going to attack the tumor with radiation and let the drug continue to do its job. Hopefully, the radiation will break the tumor down enough to where the drug can get in there and infiltrate even more.
I am living my life as best as I can while treating my cancer. Because of the cancer, I am more likely to say yes to things. I used to say no a lot more. I'm looking for joy whenever I can and saying yes whenever I can afford to. For example, we just got back from Hawaii, and I will continue to focus on living rather than just thinking about cancer and how it affects my life.
I'm going to stay on this treatment as long as I continue to respond. As far as what's next if it stops working: My oncologist and I have war room talks. Every once in a while, my doctor will tell me about the new drugs going into trial. There's just so much hope now, and so many new treatments coming in the near future. I intend to continue to fight, get involved, and learn more about this disease, because knowledge is power.
