Stephen Huff grew up living and breathing baseball in Tennessee. He earned a college scholarship to as a pitcher to Austin Peay State University, where he was drafted by the Chicago White Sox. He was the epitome of health.
"Growing up as an athlete and being a pro athlete, exercise and taking care of my body was my way of life," he told MensHealth.com. "I trained everyday, ran between 5-8 miles at a time. I've always been hyper vigilant about what I eat, what I drink. I always tried to eat organic. I mean, I was afraid to take Tylenol!"
A few years after leaving the minor league and time spent coaching baseball, he went back to school to get his teaching degree and start a new career. While finishing up his first year of teaching high school computer classes, he started feeling a bit off.
"I was very asymptomatic for a long time," he said. "I had some vague symptoms—I felt like I had indigestion or heartburn. Towards the end of 2016 and early 2017, I developed a nagging cough and had a wheezing sensation."
He went to a walk-in clinic, where they diagnosed him with bronchitis and gave him antibiotics to treat it. The doctor noticed a larger-than-usual swollen lymph node in his neck, which they attributed to the bronchitis.
They sent Huff on his way, but two or three weeks later, he still wasn't getting better. So he made an appointment with an ENT doctor, and they sent him for a CT scan.
"I knew something was wrong when I left the imaging center and my phone rang 30 minutes later," he said.
The conversation was a jumble of words and phrases.
"My doctor said, 'I just got your results, and they're not good. You have a lot of stuff going on in your body that is totally irregular. I made you an appointment with an oncologist first thing tomorrow morning,'" Huff recalled. "All I could say was, 'What do you mean, what are you talking about? What's an oncologist? And he said, 'It's a physician that specializes in cancer.' I was driving my car and had to pull over."
Huff was diagnosed with stage IV non-small cell lung cancer on June 1, 2017. At that point, it had metastasized in his lymph nodes, chest, a small spot on his liver, and on his spinal chord near his tail bone. Doctors told him the five-year survival rate was under 5 percent.
"It felt like a death sentence," he said.
"I was engaged, my fiancé Emily and I had just bought our first house, and we were getting married in three months. Cancer was nowhere in the plan. The first two weeks after I was diagnosed, I wasn't sleeping or eating. I lost almost 20 pounds in 2 weeks."
So how did this happen to a young guy who was the picture of health?
To set the record straight, you can get lung cancer without ever having smoked. And while smoking is still the greatest risk factor for lung cancer, it's not the sole cause.
"Approximately 10-25 percent of people with lung cancer worldwide are non-smokers," Roy S. Herbst, MD, Ph.D, chief of medical oncology at Yale Cancer Center, told MensHealth.com. "Radon gas exposure is a major cause of the disease and is responsible for about 10 percent of cases. Secondhand smoke and exposure to carcinogens in air pollution or in industrial work can also be risk factors.
Nine to 14 percent of lung cancer patients are under 50 years old, he added. "Be proactive about speaking to your doctor if you experience pulmonary issues, particularly if you have been exposed to radon gas or other airborne carcinogens."
Luckily, Huff learned that his type of lung cancer could be treated with a newly-approved FDA treatment called targeted therapy, due to a rare genetic mutation called ALK that caused his cancer. His treatment requires him to take four pills twice a day, and he has not felt the terrible side effects of normal cancer treatment routes like chemotherapy and radiation.
"I have been on this treatment for about 16 months," he explained. "It attacks the specific mutations that my tumors express. Some of my tumors have dissolved completely. The primary tumor located on my bronchial tube is down 60%."
Stephen and his wife Emily have started The Huff Project, a non-profit to raise awareness and destroy stigma surrounding lung cancer.
"Lung cancer is the leading cause of all cancer related deaths, but it only receives 6 percent of federal government research dollars," he said. "We wanted to know why...and it comes down to stigma. People associate lung cancer with smoking, older folks that smoke a lot...and that's simply not the case."
When it comes to lung cancer preventative tests, there really aren't any—which can make the diagnosis even harder. (While there is no lung cancer screening protocol for nonsmokers like Stephen, annual screenings with low-dose CT scans are recommended for smokers and former smokers aged 55 and older.)
"I had two misdiagnoses of bronchitis and pneumonia, a total of two chest x-rays, three CT scans, four MRls and one full-body PET scan before I was diagnosed," Huff said. "You have to be a strong advocate for yourself if you feel like something isn't right.
He and Emily have focused The Huff Project on working to make Lung Cancer Awareness license plates available in Tennessee—and they're well on their way. They got a bill passed by Tennessee legislators in March of 2018 in support of them.
"My message is hey, if it can happen to me, it can happen to you," he said. "It’s important for me to live my days to the fullest and advocate awareness of this disease."
