Stephen
“Inoperable Stage IV lung cancer was not part of my plan.”
Stephen
From a young age, my life revolved around baseball and my dream of one day becoming a professional baseball player. To help reach my goal, I did all the right things: I exercised, ate healthy foods and never smoked. After earning a college scholarship as a pitcher, my dream was realized when I was drafted by the Chicago White Sox and spent time playing in their minor league system.
When I left professional ball, I spent some time coaching and then went back to college to get my teaching degree. In the Fall of 2016 during my first year of teaching high school computer science, I noticed that I was experiencing some shortness of breath. I attributed it to allergies, but not long afterwards I also started having a nagging cough with a wheezing sensation as well as a feeling similar to indigestion or heartburn. Then in January of 2017, I was driving home from school one evening when I noticed a hard lump above my collarbone. It was at that point that my then fiancé (now wife), Emily, took me kicking and screaming to the doctor to get checked out.
After 4 x-rays, 3 CT scans, 2 ultrasounds, a PET scan, dozens of blood tests, and several misdiagnoses, we finally learned on June 1, 2017 that I had inoperable Stage IV non-small cell lung cancer which had metastasized to my lymph nodes, chest, liver, spine and tail bone. I had just turned 29 years old and had my whole life ahead of me, and my new reality seemed surreal. When my doctor told me that the five-year survival rate was under five percent, I felt like I had received a death sentence. I had just bought my first house and was getting married in three months, and inoperable Stage IV lung cancer was not part of my plan.
Not knowing what to expect with my new diagnosis, I drew on my background as an athlete and started to prepare myself mentally and physically for the battle. I assumed that chemotherapy would be my only treatment option, and I knew enough about cancer to know that the days ahead would be very difficult. However, my cancer journey and treatment options quickly changed direction due to one simple genetic test called the “Foundation One” test. This test searches the DNA of your tumor looking at over 300 genes for cancer-relevant mutations (changes). The results showed that I was positive for a rare Anaplastic Lymphoma Kinase (ALK) mutation—and the knowledge gained by that genetic test was life changing for me. Because of this genetic mutation, my first treatment option wasn’t chemo as expected, it was a newly-approved FDA targeted therapy treatment using the drug, Alectnib, which I take twice a day orally by tablet. The side effects have been minimal compared to chemo, and most importantly, this targeted therapy allows me to live a normal life. Alectnib attacks the specific mutations that my tumors express, and some of my tumors have dissolved completely. To me, this is a miracle drug that is giving me precious time with my family and friends with a great quality of life.
It would have been easy for my doctors to overlook ordering genetic testing for me.
The ALK mutation found through genetic testing isn’t a hereditary mutation like the BRCA mutations found in some people with breast and other cancers. It is an acquired mutation that develops in some cells due to a variety of factors like exposure to environmental carcinogens which can damage genes and chromosomes and result in mutated cells. There is a growing consensus that everyone diagnosed with non-small cell lung cancer should be tested for ALK and other treatable genetic mutations—regardless of sex, race, age, smoking history, and other risk factors. I was young, in excellent physical condition, and had never smoked. Based on these factors, it would have been easy for my doctors to overlook ordering genetic testing for me. In ordering that genetic testing, they changed my life.
I’ve learned more about myself over the last few years than I did in my first 29 years, and as I’ve coped with my diagnosis, I’ve revised the question from “why me” to “why not me?” I don’t know what my future holds, and I’ve never wanted to have any kind of timeline from my doctors. There are numerous drugs both in the trial phase and being approved that are doing amazing things, so it is very difficult to say what my prognosis is now. My wife and I try not to focus on what the statistics say and focus more on how we feel day-to-day. We have been blessed with a son during this cancer journey, and I NEVER allow myself to lose hope. Even against all the odds, against all logic, we can still hope.
At school, sparking the imagination of my students has given me a purpose each day. Out of the classroom, my diagnosis has turned me into an educator of the general public on the warning signs of my disease. My message is, “If it can happen to me, it can happen to you.”
Because of our desire to educate and advocate for others with lung cancer, Emily and I started The Huff Project (https://www.thehuffproject.org), which is a nonprofit organization committed to raising awareness and destroying the stigma surrounding lung cancer. Lung cancer is the leading cause of ALL cancer related deaths, but it only receives six percent of the federal government’s research dollars. We wanted to know why, and it comes down to stigma. People associate lung cancer with older people that smoke a lot, and that’s simply not the whole story. I am proof that you can get lung cancer without ever having smoked. While smoking is still the greatest risk factor for lung cancer, it’s not the sole cause. Lung cancer does not discriminate—it doesn’t attack just smokers and it attacks people regardless of their age.
My successful treatment gives me so much hope for a better future—a future where people are not only living, but thriving with lung cancer as a chronic disease. For me, cancer has been a blessing in disguise. I appreciate life more than I ever did before I was diagnosed and I’m a stronger person because of this battle. I will spend the rest of my life advocating for the awareness of my disease, because I believe it will have an impact. During this journey, I’ve learned that our lives aren’t measured in years, they’re measured by the number of people we touch around us. Inspire someone today! And if you know someone with lung cancer, make sure they have had genetic testing for the ALK mutation. It might save their life!
“Inoperable Stage IV lung cancer was not part of my plan.”
Stephen
From a young age, my life revolved around baseball and my dream of one day becoming a professional baseball player. To help reach my goal, I did all the right things: I exercised, ate healthy foods and never smoked. After earning a college scholarship as a pitcher, my dream was realized when I was drafted by the Chicago White Sox and spent time playing in their minor league system.
When I left professional ball, I spent some time coaching and then went back to college to get my teaching degree. In the Fall of 2016 during my first year of teaching high school computer science, I noticed that I was experiencing some shortness of breath. I attributed it to allergies, but not long afterwards I also started having a nagging cough with a wheezing sensation as well as a feeling similar to indigestion or heartburn. Then in January of 2017, I was driving home from school one evening when I noticed a hard lump above my collarbone. It was at that point that my then fiancé (now wife), Emily, took me kicking and screaming to the doctor to get checked out.
After 4 x-rays, 3 CT scans, 2 ultrasounds, a PET scan, dozens of blood tests, and several misdiagnoses, we finally learned on June 1, 2017 that I had inoperable Stage IV non-small cell lung cancer which had metastasized to my lymph nodes, chest, liver, spine and tail bone. I had just turned 29 years old and had my whole life ahead of me, and my new reality seemed surreal. When my doctor told me that the five-year survival rate was under five percent, I felt like I had received a death sentence. I had just bought my first house and was getting married in three months, and inoperable Stage IV lung cancer was not part of my plan.
Not knowing what to expect with my new diagnosis, I drew on my background as an athlete and started to prepare myself mentally and physically for the battle. I assumed that chemotherapy would be my only treatment option, and I knew enough about cancer to know that the days ahead would be very difficult. However, my cancer journey and treatment options quickly changed direction due to one simple genetic test called the “Foundation One” test. This test searches the DNA of your tumor looking at over 300 genes for cancer-relevant mutations (changes). The results showed that I was positive for a rare Anaplastic Lymphoma Kinase (ALK) mutation—and the knowledge gained by that genetic test was life changing for me. Because of this genetic mutation, my first treatment option wasn’t chemo as expected, it was a newly-approved FDA targeted therapy treatment using the drug, Alectnib, which I take twice a day orally by tablet. The side effects have been minimal compared to chemo, and most importantly, this targeted therapy allows me to live a normal life. Alectnib attacks the specific mutations that my tumors express, and some of my tumors have dissolved completely. To me, this is a miracle drug that is giving me precious time with my family and friends with a great quality of life.
It would have been easy for my doctors to overlook ordering genetic testing for me.
The ALK mutation found through genetic testing isn’t a hereditary mutation like the BRCA mutations found in some people with breast and other cancers. It is an acquired mutation that develops in some cells due to a variety of factors like exposure to environmental carcinogens which can damage genes and chromosomes and result in mutated cells. There is a growing consensus that everyone diagnosed with non-small cell lung cancer should be tested for ALK and other treatable genetic mutations—regardless of sex, race, age, smoking history, and other risk factors. I was young, in excellent physical condition, and had never smoked. Based on these factors, it would have been easy for my doctors to overlook ordering genetic testing for me. In ordering that genetic testing, they changed my life.
I’ve learned more about myself over the last few years than I did in my first 29 years, and as I’ve coped with my diagnosis, I’ve revised the question from “why me” to “why not me?” I don’t know what my future holds, and I’ve never wanted to have any kind of timeline from my doctors. There are numerous drugs both in the trial phase and being approved that are doing amazing things, so it is very difficult to say what my prognosis is now. My wife and I try not to focus on what the statistics say and focus more on how we feel day-to-day. We have been blessed with a son during this cancer journey, and I NEVER allow myself to lose hope. Even against all the odds, against all logic, we can still hope.
At school, sparking the imagination of my students has given me a purpose each day. Out of the classroom, my diagnosis has turned me into an educator of the general public on the warning signs of my disease. My message is, “If it can happen to me, it can happen to you.”
Because of our desire to educate and advocate for others with lung cancer, Emily and I started The Huff Project (https://www.thehuffproject.org), which is a nonprofit organization committed to raising awareness and destroying the stigma surrounding lung cancer. Lung cancer is the leading cause of ALL cancer related deaths, but it only receives six percent of the federal government’s research dollars. We wanted to know why, and it comes down to stigma. People associate lung cancer with older people that smoke a lot, and that’s simply not the whole story. I am proof that you can get lung cancer without ever having smoked. While smoking is still the greatest risk factor for lung cancer, it’s not the sole cause. Lung cancer does not discriminate—it doesn’t attack just smokers and it attacks people regardless of their age.
My successful treatment gives me so much hope for a better future—a future where people are not only living, but thriving with lung cancer as a chronic disease. For me, cancer has been a blessing in disguise. I appreciate life more than I ever did before I was diagnosed and I’m a stronger person because of this battle. I will spend the rest of my life advocating for the awareness of my disease, because I believe it will have an impact. During this journey, I’ve learned that our lives aren’t measured in years, they’re measured by the number of people we touch around us. Inspire someone today! And if you know someone with lung cancer, make sure they have had genetic testing for the ALK mutation. It might save their life!