Why I went to MD Anderson for my oral squamous cell carcinoma treatment

A few of my relatives have had cancer over the years, but not many. And the one who developed lung cancer was a grandparent who smoked three packs a day and was diagnosed in her 60s.

So, when I was diagnosed with a type of oral cancer called squamous cell carcinoma in August 2018, I was shocked. I was only 31 at the time. And I learned later that this disease is not something typically seen in anyone under the age of 60 who doesn’t use tobacco or drink alcohol.

My surprise oral squamous cell carcinoma diagnosis

I found out I had oral cancer entirely by accident. My teenage twins were having some cavities filled by our family dentist, and we had a few hours to kill before we left town to visit my husband at his job in West Texas. I figured I might as well have my teeth cleaned while I waited.

I asked the dental hygienist to examine my gums first, though, because I thought I had a little infection going on. She took one look and ran to get the dentist. He told me he saw some discoloration there, too, and said I needed to get it biopsied right away. He suspected it was cancer.

I said, “No way is that cancer in someone my age. Besides, the car’s all packed up and we’re ready to go.” And he said, “I’m very sorry. But I think you need to call your husband and cancel this trip.”

Why I came to MD Anderson for my oral squamous cell carcinoma treatment

I was pretty scared, but I took the dentist’s advice. A local oral surgeon performed the biopsy a day or so later and confirmed the diagnosis: I had squamous cell carcinoma of the oral cavity. He referred me to an oncologist in Shreveport who’d dealt with it before, but I didn’t want to go there. And the doctor I saw in Tyler said my cancer was too advanced for him. That’s when I decided to go to MD Anderson, because I’d heard it was the best hospital in the nation for treating cancer.

I called the phone number on the website. The lady who answered the phone was very sweet. She asked me some questions and helped me set up an appointment. A week or so later, I was meeting with Dr. Jeffrey Myers, a head and neck surgeon.

It turns out that Dr. Myers’ assistant, Jill Flynn, is from my hometown. We recognized each other right away, because she’s one of my high school best friend’s cousins. Everyone I met at MD Anderson was kind and super helpful. But finding that little piece of home at MD Anderson was especially comforting, because my first day there was one of the scariest of my life.

My oral squamous cell carcinoma treatment game plan

The first thing Dr. Myers did was order a new set of scans. I really liked that, because it meant he wasn’t just going based on somebody else’s findings. He wanted to start fresh, at Ground Zero.

Unfortunately, the new scans showed that the cancer was not only in my gums, but also in my jawbone and tongue on the left side of my mouth. So, Dr. Myers came up with a game plan.

In the best-case scenario, I’d have surgery to remove the tumors and at least some of my teeth replaced with implants. But if the cancer was even more advanced than the scans revealed, I’d need to have part of my jawbone replaced. I’d also need to have all of my teeth extracted on the lower left side, and probably a course of radiation therapy.

My oral squamous cell carcinoma treatment

It turned out that my cancer was more advanced, so Dr. Myers removed a part of my tongue, gums and jawbone during the surgery. Plastic surgeon Dr. Pierong Yu rebuilt my gums using muscle and skin from my right leg, and replaced my diseased jaw bone with a section of my right fibula, or non-weight-bearing lower leg bone. I also had six weeks of proton therapy under Dr. Clifton Fuller.

I finished all of my cancer treatments by the end of 2018. Since then, I’ve had two additional surgeries: one to remove some hardware from my jaw that kept getting infected, and the other to remove a mass from my left kidney that turned out to be non-cancerous and completely unrelated.

Several expected — and one very unusual — cancer treatment side effects

The aftermath of the first oral surgery was tough. I had to eat through a feeding tube for almost a month, which was miserable. And I wouldn’t wish a trach tube on anybody.

But the hardest part of my recovery was actually learning to walk again. I have a scar on my right leg from my ankle to my knee where a bone and some of the muscle and skin were removed. And I still don’t have full range of motion in my left arm or shoulder, because the muscles on that side of my body just “froze up” during surgery, in some kind of weird defense mechanism. I’m getting physical therapy and massage therapy now to “unfreeze” them.

The most unexpected treatment side effect I experienced was probably when I discovered a leg hair growing in my mouth. Dr. Yu used a whole section of my skin to reconstruct my gums, and I mistook one of the follicles for a loose stitch when it started sprouting a new hair. That didn’t seem very funny to me at the time, but looking back now, I think it’s hilarious. Fortunately, proton therapy destroyed the follicle’s root, and my speech was never affected, so having the weirdest kind of hair ever in my mouth wasn’t an issue for long.

Making the most of life after an oral squamous cell carcinoma diagnosis

I still have some limitations in terms of what I can do. I can’t walk around all day, for instance, due to lingering neuropathy. And I’m still on a soft foods diet, because I’m missing a quarter of my teeth and can choke fairly easily.

I’ll probably have to learn to eat all over again, too, once my dentist, Dr. Richard Cardoso, fits me with some permanent dentures. We actually started that process back in early 2020, but COVID-19 hit, and we had to press pause. My teeth have shifted around a lot since then, so now we’re back to square one.

Things could have gone differently

Everything in life is an adjustment, though, so I don’t let any of that weigh me down. I just figure out how to deal with it, and keep on going. I’m still here, raising my kids, and spending time with my husband. So, I’ve got no reason to be sad or depressed.

Still, I’m very aware that things could have turned out much differently if I’d gone somewhere else. I met another woman a few years ago, who was even younger than I was when she was first diagnosed. She had the exact same type of cancer I did, and some oral reconstruction, too. But her cancer came back. I begged her to go see Dr. Myers. But her dad was a doctor, and he wanted her to stay where she was. She died a short time later.

I can’t help thinking that if my friend had been treated at MD Anderson, her story might’ve ended much differently. I also keep thinking, “That could’ve been me.” But I did go to MD Anderson, and I’m so glad and grateful. Because I’ve been cancer-free since 2018. I don’t regret anything.

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