Scott’s journey began in the summer of 2018 when he noticed swelling on the roof and back of his mouth. As a healthy, athletic, and active 34-year-old, he didn’t think much of it initially. He tried various home remedies to reduce the swelling, but nothing worked, and he eventually began to experience occasional pain in the area. In August, during his regular dental cleaning, Scott mentioned the swelling to his dentist and requested an examination.
Reviewing his X-ray images, the dentist looked concerned and stated, You have no bone. The dentist showed Scott the difference between the dense, strong bone on the left side of his face and the weak, spongy tissue on the right. His teeth on the upper left side were being held in place only by soft gum tissue, thanks to the health of his oral hygiene.
Unable to provide any answers, his dentist referred Scott to a periodontist, who fortunately had an appointment available that same morning. After reviewing additional images, the periodontist said, I have good news! It’s not cancer. The mention of cancer, even in the context of reassurance, was shocking to Scott. The periodontist believed it was a benign tumor and referred Scott to an oral surgeon.
Scott’s oral surgeon recommended an X-ray and a CT scan. The CT scan revealed a mass integrated along several teeth in Scott’s right cheek, alongside several nerves, sinuses, and vascular tissue. The radiology report classified the mass as almost certainly malignant. The oral surgeon outlined the next steps: a biopsy and a referral to the ENT department at Shands Hospital, part of the University of Florida Health System in Gainesville, Florida.
Needing to process the events of the previous month, Scott took the next day off and shared his diagnosis with his family and friends. He called his parents first. We did not speak on the phone often, so making a call in the middle of a work afternoon was very rare. How do you tell your parents there is a very real chance you have ‘almost certainly’ cancer? I tried to be very matter-of-fact, but as the words were coming out of my mouth, I began to break down into tears. My parents tried to remain calm as they were trying to confirm what they thought they heard. After the emotions settled, I was able to explain what I knew and the next steps. Scott then underwent a biopsy and was referred to an ENT Specialist. The following week, Scott, his mom, dad, and sister met with his medical team. The brief examination concluded that the growing mass had to come out, whether it was cancerous or benign. The surgery would remove the tumor, several teeth, including his two front teeth, and part of the maxilla. The area occupied by the tumor would be replaced with a bone graft from his left leg’s fibula. This approach aimed to allow for dental implants to replace the teeth embedded in the removed tumor and to maintain Scott’s facial appearance as normal as possible. However, his leg would require extensive physical therapy, with no guarantee of full function afterward, which was a significant blow for Scott to accept.
Before the surgery, Scott received a call from his oral surgeon. The biopsy results were in: osteoblastoma. NOT CANCER! This simplified the treatment plan to just surgery. A 12-hour surgery led to a 7-day ICU stay, the most challenging week Scott had ever experienced.
I was in so much pain I didn’t want to be awake. They covered me with heating blankets to elevate my body temperature to help the blood flow to the healing bone and skin grafts in my mouth, Scott said. Being unable to take care of myself in any way was very humbling. Just going to the bathroom felt like one of the most embarrassing experiences I had ever felt. I was forced to let go and let people help me. The nights were long and I was never able to sleep. I was fed only through a feeding tube, which made me feel extremely nauseous.
After a week in ICU, Scott was finally released to his parents’ place. His diet was still limited to only clear liquids, no solid foods. He returned to UF Health for his post-op check-up a month later. They had performed a biopsy on the tumor, and it was confirmed to be osteosarcoma. Cancer cells were also within the margins of the graft. Scott would now require radiation on both sides of his face, causing his heart to sink into despair.
Proton beam radiation was recommended for its precise targeting, reducing collateral damage to nearby facial structures compared to traditional IMRT radiation therapy. The closest proton beam facility was in Orlando. After 2 months of recovery in Gainesville, Scott was able to return to his own home for radiation treatment.
A week and a half into radiation treatment, Scott started feeling less energetic and noticed that food began to taste bland. He lost his sense of taste, followed by severe fatigue and mucositis in his mouth. These effects worsened rapidly, leaving him barely able to walk, with his mouth and tongue burning so badly that he couldn’t tolerate solid food or even water. His entire body ached, and he needed pain medication to sleep. Scott began to abuse the oxycodone prescribed to him, seeking escape from the intense pain that only subsided briefly.
Scott underwent 40 sessions of hyperbaric oxygen treatments to aid his recovery and prepare for the final phase: getting his teeth. In February 2021, after waiting through COVID-19 shutdowns and several other oral surgeries, a prosthesis was finally created and delivered. Scott had a real smile again and something to smile about.
On March 25, 2019, Scott completed the 7 weeks of radiation, but the pain, burning, and fatigue persisted for another two months before subsiding. The burning in his mouth finally lessened enough for him to eat solid food again. His first meal was KFC mashed potatoes. While he couldn’t yet tolerate fried chicken, it was a start. His energy gradually returned, but it took over a year to feel somewhat normal again.
Long-term side effects appeared soon after radiation ended. Scott’s mouth muscles became tight and scarred, limiting him to opening his mouth only a quarter of an inch, making eating solid food difficult. This problem progressed until he could no longer fit or chew solid foods, necessitating another liquid diet. A follow-up surgery stretched his jaw to a half inch, enough to fit small bites of food and chew, but eating remained difficult and tiring. This issue persists today, making it hard for Scott to gain weight back.
Scott feels like a different person now than he was in 2018, more grateful, present, and authentic. He has become more empathetic and compassionate, thriving on personal connections and aiming to make a positive impact in others’ lives. He hopes to leverage his story and experiences to inspire, motivate, and support cancer patients and survivors as an ambassador.
