I never could’ve imagined where my diagnosis with stage 4 EGFR-positive lung cancer would lead. Oh, the things I’ve experienced, the places I’ve gone, and the people I’ve met.
Since my diagnosis, I’ve experienced some of the toughest challenges of my life.
I’ve had a collapsed lung and five brain metastases. I’ve had a craniotomy to remove a brain tumor, multiple radiation treatments, tumor ablation (back surgery), and multiple procedures on my lungs.
I’ve participated in a clinical trial and tried multiple targeted cancer therapies.
I’ve also traveled across the United States to lung cancer conferences and patient advocacy groups.
And I’ve befriended some of the toughest and smartest medical professionals and fiercest cancer fighters I know — who I call my lung cancer brothers and sisters — on my journey to advocating for all of us.
In summer 2016, after experiencing breathing spasms, tightness, and chest pain, I knew that something was wrong.
I’ve been an asthma sufferer since 1982 when I was diagnosed with exercise-induced asthma, but this particular summer my rescue inhaler wasn’t helping with the heavy breathing I was experiencing.
My doctor informed me that it was probably nothing but asked to see me 6 months later. I brushed it off and thought it was just a result of the South Carolina summer heat.
A few weeks later, I awoke abruptly in the middle of the night with severe chest pain. It was the classic pain some describe when experiencing a heart attack — like an elephant standing on your chest.
The pain moved through my back and arms. Though it eventually went away, I knew I needed to see a doctor.
I decided to switch to another primary care doctor. After a thorough review of my medical history, my new doctor ordered a simple chest X-ray.
Nothing could have prepared me for what came next. The scans showed a mass on my right lung. Although the healthcare team didn’t know exactly what it was then, they suspected it was lung cancer.
I also learned that lung cancer has a 5-year survival rate of about
In September 2016, a PET scan confirmed that I had stage 4 EGFR-positive lung cancer. My outlook was far worse, as stage 4 lung cancer only has a 5-year survival rate of around
The hardest thing my wife and I had to do was tell our kids about the cancer. They didn’t necessarily understand all the details, but they were all crying.
I knew I had to be there for them, so that night I told everyone to grab pillows and blankets, and we slept in the same bedroom.
I wanted to show the kids that I was fine and would wake up in the morning.
Treatment started with radiation on my T2 vertebrae (spinal) tumor to help with chest pain, brain radiation, and a targeted oral drug called Gilotrif (afatinib).
Though I initially responded well to my treatment plan, I developed radiation pneumonitis — an inflammation of my lungs caused by the treatment. Several months later, I developed swelling in my brain.
The swelling didn’t respond to steroids, so in July 2017, I had a craniotomy, a surgery in which a piece of my skull was removed. I responded so well to that procedure that I actually cut the grass on my lawn the following weekend.
I was in fairly good health until late 2018, when I developed a chronic cough and wheezing. Exams of my lungs, including a bronchoscopy and biopsy, confirmed a cancer mutation. I then needed another treatment change.
I opted to participate in a clinical trial. During the trial, I experienced a 20 to 25 percent shrinking in tumor size, which was amazing. However, I had to stop taking the clinical trial drug when an MRI scan revealed five new brain metastases.
For now, I’m on my third targeted therapy drug and doing well!
During my journey, I sought out other people with lung cancer for many reasons:
- to learn and understand the disease
- to become a part of the lung cancer community
- to mentor people newly diagnosed with lung cancer
- to get involved with advocacy
Through this, I’ve met many dedicated lung cancer survivors, patient advocates, and medical professionals — all with the single-minded purpose to advance efforts against lung cancer.
I also learned early on that you need to advocate for yourself. If you don’t, who’s going to advocate for you? Lung cancer doesn’t discriminate. People of all races and backgrounds, smokers and nonsmokers, can be affected.
We can raise awareness of lung cancer, we can give money to worthy causes, and we can participate in fundraising activities. But there’s no research knowledge gained unless people with lung cancer participate in clinical trials to help assess new treatments to provide better options in the future.
If you or a loved one have lung cancer, consider getting involved in ongoing research. This research, along with new technologies that detect lung cancer earlier, will help change the narrative, taking lung cancer from being a terminal disease to someday a very curable condition.
Mike Smith is a patient advocate with stage 4 lung cancer. He lives in Fort Mill, South Carolina, with his wife and three kids. September 2021 will mark the 5-year anniversary of Mike’s lung cancer diagnosis. Mike is still in treatment, works full time, and advocates for all people living with lung cancer through volunteer work with the American Lung Association, Congressionally Directed Medical Research Program for Lung Cancer, International Association for the Study of Lung Cancer, Levine Cancer Center, Lungevity, Livestrong, Live Lung, EGFR Resisters, Wind River Cancer Retreats, Lung Cancer Initiative of North Carolina, and South Carolina Cancer Alliance.