How I Decided to Hold Out for the Best Lung Cancer Treatment
By Leah Phillips, as told to Janie McQueen
I was diagnosed with lung cancer in December 2019. I never even tried a cigarette. I didn’t grow up around secondhand smoke. But at first, before I had biomarker testing, doctors told me they hoped I’d be alive at Christmas the following year.
In September 2019, it started with a cough that was persistent and didn’t go away. Eventually I was misdiagnosed with pneumonia. Then I went in for another CT scan and it showed lytic lesions — cancer spots — in my spine. A bone biopsy showed they’d spread from my lung to my spine and pelvis.
The oncologist diagnosed me with stage IV lung cancer and was ready to start me on chemo and immunotherapy. Meanwhile, my husband connected with Dr. Leora Horn at Vanderbilt University Medical Center by email over Christmas break. She said, “Absolutely, do not let her put one drug in her body.” She wanted me to do biomarker testing, and if I were to start chemo or immunotherapy, it could cause a tyrosine kinase inhibitor (TKI) drug treatment I might try instead to not work.
The Turning Point: Biomarker Testing
The key turning point for us – my husband has been my partner every step of the way – was getting biomarker testing. At big hospitals, that’s the first thing they do. But many smaller hospitals, like those near us, aren’t research driven. You need to get a second opinion and biomarker testing. It’s your life.
So mine came back showing a genetic mutation called an EGFR exon 19 deletion. What breaks that gene and allows lung cancer to grow? Radon exposure.
Radon is an odorless, tasteless gas emitted through limestone. Certain areas of the country, like Colorado and Tennessee, have lots of limestone in the ground. It’s emitted daily, but diluted in the air so much that it’s not a danger.
But there can be high radon exposure and radon poisoning emitted through the limestone that houses or buildings sit on. It can get trapped in the structures, so you breathe it in. It takes 5 to 25 years for the radon to break the gene.
The EPA measures radon by pCi, aka picocurie or “pico” for short. It’s the rate of radon’s radioactive decay. A level 4 or below is deemed OK. But if, for example, you have a pico reading of 20 in your home, it’s the equivalent of smoking 40 cigarettes a day. And though that pico level is high, it’s not even super high.
I grew up in Kentucky, where radon is prevalent. It’s ever changing. You really have to have radon tested every 2 to 3 years. If your radon level comes back high, you can opt to have it mitigated. This means you can have a fan placed in your attic. Then a pipe sucks the radon out of your house and expels it, but keeps a constant flow.
I could try to trace back where I was exposed to radon, but my energy is better spent moving forward with my treatment.
Targeted Therapy a Success
Targeted therapy is a type of cancer treatment. It zeroes in on proteins that direct the division, growth, and spread of cancer cells. My doctor at Vanderbilt prescribed Tagrisso (osimertinib mesylate), an approved targeted therapy for people with EGFR exon lung cancer.
The way it works is, that gene is broken, but targeted therapy tricks your body into thinking it’s still intact. Sometimes the cancer catches on that it’s not the real deal and mutates.
I started on Tagrisso in December 2019. By December 2020, the primary tumor had shrunk by 70% and all my bone mets — short for metastases, or cancer cells that have spread to the bones — had healed.
We made the decision to be aggressive and proceed with eight high powered SBRT, aka stereotactic body radiation therapy. This treatment uses super focused, strong radiation doses that attack cancer cells but aren’t as harmful to healthy tissue. In theory, this killed any remaining cancer cells that were present in my primary tumor. I’ve remained on Tagrisso and haven’t had any progression.
My condition has remained stable, with no cancer growth.
They say targeted therapies like Tagrisso can be effective for 2 to 3 years before it stops working. Well, it’s been almost 3 years and it’s still working. Tagrisso is a new drug — it was approved in 2018 — so really the jury is still out on how long it can last. I don’t think the projections take into account the overall health of the person, either. I’m very fit and active, a busy mother of 3, only 43 years old at the time of diagnosis and currently 46.
The Takeaway, So Far
I think a major plus for us in this journey has been that we’re educated people. We know not to just trust what one doctor says. We know how to be our own advocates. I was running about 20 miles a week, and caring for kids ages 8, 12, and 13, when I was diagnosed. I was like, “I can’t be done here.” I wasn’t willing to take this “two years to live” sentence. We quickly became our own advocates because we had to be.
Lung cancer is a very lonely cancer. Most people diagnosed with it are older and have smoked. The general perception is, “You smoked. You did this to yourself.” Well, for one, I don’t look sick. It’s a huge stigma you don’t deserve. No other cancer seems as isolating. For example, people empathize with you more if you have a condition like melanoma.
For those of us who are younger – we make up 20% of lung cancer diagnoses – we’re rolled in with everyone else. It seems people don’t want to devote energy to research and funding as much as other types of cancer. This is a hard cancer to have.
But we forge ahead. We drive 3 hours every 3 months from Louisville to see these specialists. I maintain a passion for raising awareness that anyone can get lung cancer and for sharing what has worked for me.