An Ohio man is sharing his medical “breakthrough” after recurring sinus infections were a sign of cancer.
Aaron Agler was 27 when he started experiencing chronic sinus infections, continuously going back to the doctor’s office for antibiotics. In addition to the sinus infections, he was also dealing with unusual snoring, which doctors initially believed was sleep apnea.
“It got to the point where the doctor was like, ‘OK, no more antibiotics. Something else is going on here,’” his girlfriend Danielle Styer, 31, told TODAY, speaking on his behalf after his disease impacts his voice. “When he looked in his mouth … it looked like the roof of his mouth was heavy, like pushing down.”
In February 2018, Agler underwent testing and learned that his nonstop sinus infections were actually a sign of a rare cancer.
He was diagnosed with nasopharyngeal rhabdomyosarcoma, a rare type of soft tissue sarcoma that formed in the top of his throat and was slowly destroying his pharynx, the muscular tube needed for breathing and swallowing. According to the National Cancer Institute, the disease typically occurs in children and Styer said the couple were told his case is “super rare.”
Agler’s doctors came up with a treatment plan for him, including 40 weeks of chemotherapy with six weeks of radiation in between. “By fall they said that everything should be fine or should be getting better,” Styer recalled. “They would have a better idea of what [treatment] should be next.”
However, scans at the 12-week mark revealed that Agler’s cancer was continuing to grow. He underwent a tracheostomy — an opening in the windpipe to help him breathe — finished radiation and then switched to a different chemo regimen.
“The tumor started gradually shrinking,” Agler told the outlet via email. “For almost a year it continued to shrink to the point where they felt comfortable removing my trach.”
However, a year later, he was looking into the mirror one day when he yawned and was shocked to see what the inside of his mouth looked like. “You could physically see the tumor,” Styer said. “It was coming down and you could see it in the back of his throat.”
“It was actually really scary because when you think about it unless it’s like a skin cancer … you don’t see a tumor,” she added. “It was really unnerving.”
With Agler’s new tumor growing quickly, doctors decided that another tracheostomy and a feeding tube were necessary. However, surgery on it would be dangerous as the tumor began growing around his carotid artery. “He literally could die in the surgery because of how dangerous it is,” Styer explained. “The day before [doctors said], ‘Sorry guys, we can’t do it. It’s too dangerous.’”
“We didn’t know how to tell the family because everyone was preparing for all of this,” she continued. “How am I going to tell his mom that he’s not going to have surgery to try to save his life?”
Agler started a new chemotherapy and radiation treatment but again, six months later the tumor started growing back. He saw multiple doctors before landing with Dr. Shlomo Koyfman, a radiation oncologist at Cleveland Clinic Cancer Institute, who decided a reconstructive surgery called stereotactic body radiation therapy (SBRT)was the best option to tackle the cancer.
“You could tell [the doctor] wasn’t going to give up on anything,” Styer said. “He was bound and determined. He said, ‘This is a challenge for me.’”
Despite the possibility of the treatment causing permanent impaired abilities to eat and speak, Agler underwent the therapy in April 2020 and another extensive surgery in October 2020. The team of doctors were able to remove all of the cancer.
“I wouldn’t be here without it,” Agler said. “My team of caregivers have all become like a second family to us.”
Agler, now 34, was still left with some lifelong damage following chemotherapy, radiation and surgery, including the left side of his tongue and his left vocal cord being paralyzed. Doctors also removed his soft palate during surgery, which makes his voice extremely low and forces him to rely on a liquid diet due to difficulty eating.
Although the cancer is gone and he’s recovered well, he doesn’t want to get too excited due to the possibility of recurrence. However, Agler is keeping high spirits.
“Even when I felt there was no way out, I never gave up hope,” he told to the hospital. “I didn’t know how, but I just knew in my heart there was going to be a breakthrough. And if you have a medical team willing to do anything to save your life and a support system to stand behind you, that is the best thing you could ever have.”
“He was so positive through the whole thing and that changed everything,” Styer told TODAY. “If you have a good attitude and a positive attitude that’s half the battle.”
The couple is hoping that sharing their story will encourage others going through similar battles with cancer.
“Never give up. Honestly, just keep pushing. You need to have a good relationship with your doctors. They need to understand you,” Styer added. “His doctors pushed so hard to try and save him and that’s why he’s here.”
