3 pieces of advice from a 5-time oral cancer survivor

The first time I was diagnosed with oral cancer, I was only 26. The wart-like growth on my tongue was pretty small. A biopsy showed it was squamous cell carcinoma, and an oral surgeon successfully removed it near my home in Jacksonville, Florida.  

When I developed cancer on my tongue again, 14 years later — and it came back three times in 14 months — I realized things were getting serious. Fortunately, I found my way to MD Anderson in 2017, and now I am cancer-free. 

Here are three things I’ve learned since my very first cancer diagnosis more than 20 years ago.  

Get a second opinion

There’s a big difference between a local family doctor who’s a really nice guy and a highly regarded expert who specializes in your exact disease. So, you have to be your own best advocate and get a second opinion from a specialist.  

Think of it this way: there are probably thousands of quarterbacks on high school football teams. And, there are likely hundreds of quarterbacks at the college level. But there are only 32 starting quarterbacks at the professional level in the entire country.  

Quarterbacks call the shots. They figure out what’s going on and decide what to do about it. So, if you have something life-threatening, you don’t want to mess around with someone at the high school level. You need a professional. Get the experts.  

If you don’t prioritize your health and seek treatment at a place like MD Anderson — which specializes in cancer — your outcome will likely not be as good as it could have been. The impact of cancer treatment on your lifestyle is probably going to be worse, too. 

That’s why my only regret today is that I didn’t go straight to MD Anderson in 2016, when I only had stage II oral cancer, instead of stage IV. Get a second opinion. 

Start with the best

By the time I got to MD Anderson, the tumor in my tongue was so extensive that I believed only the best place in the world could save me. I had the most confidence in MD Anderson. Looking back now, that confidence was well-placed. But if I had gone to MD Anderson first, I also might not have needed quite as much treatment — or as invasive a surgery — as I did. 

What really sets MD Anderson apart is how its specialists work together. I talk for a living, so I’m in meetings all day. I need to be able to communicate in a way that people can understand me. But I’ve lost about 90% of my tongue through various surgeries. My jawbone has also been rebuilt twice, and the original floor of my mouth was removed.  

It took me almost nine months after the last major surgery and treatments to learn how to swallow again. But I worked with speech therapists at MD Anderson, and a dental oncologist created a custom oral appliance for me to bring my palate down so I could enunciate my words more clearly.  

Having specialists like that who could build something to preserve my ability to speak was game-changing. It simply doesn’t exist where I live. There are no dental oncologists here. Having one at MD Anderson vastly improved my quality of life. 

Adopt a positive attitude

When you’ve had a head and neck cancer like mine, and as many procedures as I’ve had, there’s really no way to hide it. It’s obvious in your speech and your appearance, as well as your ability to eat. Everything changes when your health goes sideways, and all of your big plans suddenly get thrown out the window. 

But if you just sit around stewing about it, it doesn’t do anybody any good.  There’s an old saying, “Man plans and God laughs.” Perhaps that’s true, but I know my faith, family and friends have helped me maintain a positive attitude. You have to adjust to your new normal and move on. 

One of my biggest challenges has been adapting to an exclusively liquid diet. I don’t think I realized before just how much of our lives revolve around food. It’s even a big part of sitting around at home, watching a football game with friends. 

I dreamt about eating solid food for a couple of years. But I can’t. My “last supper” was blackened chicken carbonara at a Houston restaurant on July 9, 2017. It was delicious, but I haven’t eaten solid food since. And I only have about 5-10% of my sense of taste left. 

Thankfully, though, I can still swallow, and I can smell my food just fine, even if I can barely taste it. So, I liquify everything I eat, and I savor the wonderful aromas of the foods I enjoy most. 

I also get great satisfaction from my work. Since my second cancer diagnosis, I’ve been able to build up my business and expand it more than I ever imagined possible. I still travel quite a bit with my wife and enjoy playing golf, working out at the gym and walking every day. So, overall, life is good. I can’t complain. 

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