In early 2019, I noticed that I had a small lump under my right eye that just felt a little out of the ordinary. At the same time, I experienced recurring and unusual sinus infection symptoms that my doctor said was a sinus infection. I had a runny nose that would come and go, but when active, would last all day. I could literally use up a whole box of tissues in a day. My doctor prescribed me antibiotics, but they did not work.
The combination of these symptoms led me to my eye doctor. I initially thought it might be a tear duct issue. She referred me to an ocular surgeon, and I underwent a CT scan which showed something suspicious, but no tear duct infection. To follow up, I went to an Ear Nose and Throat doctor and they performed an MRI, which didn’t show anything.
Still, I felt unsatisfied by the lack of explanations, so I went back to my ENT. He looked at the CT scan, and said “I don’t know what this is, but it looks like something that should be removed. It shouldn’t be there. I know a great doctor you can see.”
I made an appointment to see this second ENT, who specializes in head and neck cancer treatment and surgery. When he examined me, he asked a bunch of questions. Right then and there, he sent me two floors down to do a needle biopsy. We got the results while I waited in his office, and it was suspected to be malignant. He then scheduled me the next month for surgery to deal with it. I had the surgery, and it was apparently successful.
They removed the lesion, as well as some bone. To create a cancer-free margin, my surgeon had to sever the intra-orbital nerve, leading to loss of innervation in part of my cheek, upper lip, nose and a few teeth. Now, they’re just numb. The muscles aren’t affected, but I have no sensation in these areas. I had a large incision down the junction of my nose and cheek. When I healed, no one could tell I had surgery.
Then COVID-19 hit, and my follow-up MRIs were postponed for three months. I had a follow-up MRI a few months later, and it showed a suspicious area in the same spot as the year before, indicating a possible return of the cancer. I went to see my surgeon and he recommended that we have another surgeon in the group remove it endoscopically. I said yes and felt happy there wouldn’t be an incision on my face.
They were able to schedule my surgery within 10 days of receiving the MRI results. The surgery was successful.
After the second surgery, I had to go through proton beam radiation. That meant going to a proton center for thirty radiation treatments over six weeks. So, Monday through Friday, for 6 weeks, I drove early in the morning to the center. I think that must have helped clear out anything else that might’ve been there. This treatment is state-of-the-art and my surgeon got it approved through insurance. Although it was not exactly an enjoyable experience, I am grateful that this option was made available to me.
For the procedure, they first took this plastic mesh screen molded through a heat process to fit the shape and size of my head. The screen would fit snugly and had to be worn for each treatment. It immobilized my head during the treatment. I’d lie on a gurney, and they put on the headgear and strapped me down across my shoulders. I literally could not turn my head or move. They rolled me in and put me under the beam, and the beam would create the treatment. That was tough to handle. I’m not claustrophobic, but that experience brought me as close to feeling claustrophobic as I’ve ever felt. Since then, I’ve had clear scans.
I have two pieces of advice to offer others on this journey. First, take your health into your own hands and listen to your body. If you think what you’re being told is incomplete or inaccurate, don’t accept it. Challenge it. Research it. Follow up. Get another opinion. Find the best doctor for what you’re going through, and ask questions. We have a lot of great doctors, but sometimes these things are out of their realm or they may just be mistaken. Second, as I said, you have to listen to your body and always be aware of what is going on with your own body. You are your own best advocate. That’s the advice I would give anyone who wants to listen.