15 Years Later, a Man Reflects on the Facial Tumor That Caused Him to Undergo Multiple Surgeries as a Teenager
Cameron Fromm was a bit of an angry young man.
In addition to the typical teen angst that emerges in many adolescents, Fromm was diagnosed with juvenile nasopharyngeal angiofibroma (JNA). JNA is a rare benign tumor located predominantly in the nasopharynx – the upper part of the throat that lies behind the nose – of adolescent males.
“When I was going through all of that, I was a teenager and it really pissed me off,” Fromm, now 30, recalls. “It’s a completely random issue, not genetic. So I kind of had the mindset of ‘why me?”
Who could blame him? JNA is very rare, accounting for 1 in 5,000 to 1 in 50,000 head and neck tumors. While not cancerous, it is aggressive and serious and can spread from the nasal cavity to the sinuses, eye socket, skull and brain.
In the early stages of JNA, symptoms include frequent or severe nosebleeds, difficulty breathing through the nose and runny nose. Symptoms get worse as the tumor grows and can include swelling of the cheeks, watery eyes, droopy eyelids and bulging eyes, headaches and pain, blindness or double vision, hearing loss, speech problems, sleep apnea and facial numbness.
While Fromm never experienced the more severe symptoms, he was unable to breathe through his nose for the better part of a year. By the time he was referred to Drs. Marc R. Rosen and James J. Evans, who co-direct Jefferson’s Minimally Invasive Cranial Base Surgery Center, 15-year-old Fromm needed surgery to have the tumor removed.
“I was so young at the time, I don’t think I knew what I was in for,” Fromm says. “I remember speaking with my parents afterward and I didn’t realize at the time that there was a possibility that they would need to peel my face back to get to where the tumor was.”
Thankfully, that was not the case.
In the past, surgical management included procedures that required incisions in the face or mouth, but more recently, incision-less approaches through the nose using advanced endoscopic sinus surgery techniques have been used successfully. Minimally invasive skull base surgery allows the surgeon to put a thin tube with a light and high-definition camera (called an “endoscope”) into the nose. Then, the surgeon uses special tools – micro-instruments – to remove the tumor or other growth.
Jefferson’s Minimally Invasive Cranial Base Surgery Center partners with specialists at Nemours Children’s Health in Delaware to offer the same approaches for children with similar rare problems of the skull base and sinuses.
“A lot of the treatments in the past were very destructive and disfiguring and required huge facial incisions, possible craniotomy,” Dr. Rosen says. “Cameron’s was one of the first done endoscopically. It has really revolutionized the approach to these tumors.”
In conjunction with new micro-instrumentation and enhanced computer navigation, this leading-edge technique provides surgeons with better visualization and improved access to the tumor, resulting in improved resections, the preservation of neurological structures and function, reduced surgical complication rates. Patients can also expect less postoperative discomfort, a shorter hospital stay and faster recovery.
Techniques and instrumentation have improved drastically in the past 15 years. Despite being done endoscopically, removal of Fromm’s tumor required numerous, lengthy surgeries. As he recalls it, the first surgery took some 15 hours and was followed by four more procedures – all over the course of about 18 months. Today, depending on the size of the tumor, JNA surgery requires only one procedure and patients often go home the next day.
“I was going nuts,” says Fromm, at the time a student at Red Lion Area Senior High School, near York, PA. “I would start feeling better after one surgery and I would kind of push myself further than my parents liked.”
Cameron’s surgery was extremely extensive and it was probably pushing the envelope to do something endoscopically at that time. But we did get it out completely and he’s 15 years post-surgery without a recurrence. –Dr. Marc Rosen
Which is why Fromm recently reached out to Dr. Rosen. Being on lockdown for the past year, a period during which Fromm contracted and successfully recovered from COVID-19, gave him pause to reflect on what he had been through – and what Dr. Rosen had done for him 15 years prior.
“I really just wanted to say ‘thank you,’” Fromm says of his e-mail to Dr. Rosen. “COVID knocked me down for a good bit, but aside from that, life is short. I know these doctors went to school and they chose to do this, but without them, I would not be here.”
Now married with a 10-year-old son, Fromm still calls the York, PA area home. “I live about 10 minutes from the house where I grew up,” he says. “I do feel like my head is on my shoulders a little bit better and if there was anything I could do to help other people going through similar situations or help Dr. Rosen with anything, I wanted to do tell him I would do that.”