Oral cancer survivor: 5 quality of life hacks that I didn’t learn until survivorship

When I was still in active treatment for stage IV squamous cell carcinoma of the tongue, a type of oral cancer, I was so focused on staying alive that I couldn’t think too far into the future. 

But after five years of being cancer-free, I finally transitioned to survivorship. That meant I only needed to come back to MD Anderson once a year for check-ups. It also meant I’d meet with a nurse or a physician assistant instead of a doctor. And finally, it meant I could start focusing on things related more to my quality of life than my survival. 

Still, before my first survivorship visit in November 2022, I remember thinking, “Do I really need to go to this thing?” Now, I know that the answer is “YES!” Because my case manager offered solutions to problems I didn’t even know I had. And, he is helping me prevent future complications that I never realized were potential issues.  

Here are five of my biggest a-ha moments since entering survivorship. 

Small adjustment to swallowing exercise enabled me to gulp again

Swallowing was really hard for a long time after I finished my treatments. It took me almost a year to pass the swallowing test that allowed me to stop receiving all my nourishment through a feeding tube. 

Even then, eating or drinking anything was a very slow process. I could only take one small bite of food or sip of liquid at a time, then chew or swallow it. And sometimes, when you’re really hot and thirsty, you just want to chug down a cold drink. If I’d done that back then, though, I would’ve choked and spit it right back up.  

It wasn’t until physician assistant Shawn Terry showed me a slightly different approach to one of my swallowing exercises that I learned this ability might not be out of my reach forever. And within three weeks of making the adjustment he suggested, I was gulping down water in a way that I hadn’t been able to in five years. I was so excited that I called my family over to watch me! 

Minor tweak to mouthwash formula significantly reduced my ‘salty days’

Until my cancer diagnosis, I’d never had a single cavity. But since finishing oral cancer treatment, I’ve had at least four. Part of that is due to radiation therapy and part of it is due to changes in my saliva. 

I get a really dramatic dry mouth now. And sometimes, my saliva is thick and much more acidic than normal. I call those my “salty days” because they make everything I eat or drink taste like salt — even milk and water. It completely kills my appetite. 

To neutralize the acid, Shawn suggested that I increase the ratio of baking soda to salt in the mouthwash I already use several times a day to keep my mouth moist. It worked! Now, instead of enduring that awful salty taste for four days every three months, it’s gone by the next day. The relief is not immediate, but it’s still a huge improvement. 

Clear, fitted teeth-aligning system may help me preserve my smile 

Another thing I learned from Shawn was that while I couldn’t use one of those clear, fitted teeth-aligning systems to fix anything that was already crooked after treatment, I could use it to prevent my teeth from getting any worse. 

That turned out to be useful information since I had four lower teeth pulled during my surgery. They’d been a little crowded to begin with, so I’d thought those remaining would naturally just kind of space themselves out. They ended up doing the exact opposite.  

All of my teeth have shifted now in a way that makes my smile less aesthetically pleasing. But it doesn’t bother me too much. It’s not a big deal, compared to the alternative. Still, I’m glad to have an option to preserve the smile that I have now. 

Posture-correcting device is helping prevent future problems 

The scarring in my neck tends to make me lean forward a lot. That will only get worse as I get older. I didn’t want to develop a hunchback, so Shawn suggested a simple posture corrector that I could buy online for about $15.  

I put it on, tightened the straps, and started wearing it for about an hour every night. I’ve only been using that device since Christmas, and it’s already helping me hold my head up straighter. 

It turns out that’s pretty important. Scar tissue can harden and thicken over time. If that happens, it could pinch or squeeze my carotid artery, causing serious circulation problems. That’s why one of the first things Shawn did as my case manager was to order an ultrasound of my neck to establish a baseline. I hadn’t even thought of that. But Shawn did. 

Simple massage trick resolved my painful oral ‘charley horses’

Shawn also helped me with the terrible pain I experienced when I yawned really hard. I was driving the first time it happened. It was so bad that I had to pull over. I thought I was going to die. It was like having a charley horse in the bottom of my mouth. 

Shawn explained that the pain was caused by a nerve spasm due to surgery and radiation. The floor of my mouth and tongue were rebuilt using a muscle from my arm, and when it spasms, it twists so hard that the bottom of it pops down and I can actually feel it under my chin. 

Shawn taught me how to make it stop by massaging the area for a few seconds and then forcing a swallow. Before that, it would take several painful minutes for the nerve to finally relax. Now, I know exactly where to press to make it stop, and the muscle pops right back into place.  

Lesson learned: Simple solutions can yield big payoffs

All of these things might seem really minor. But they don’t feel minor when they’re happening to you. And collectively, having such small tweaks result in such huge quality of life improvements is a really big deal. It makes me more grateful than ever for MD Anderson. 

It’s so reassuring to know that even now that I’ve transitioned to survivorship, I still have people at MD Anderson who care about me and know what they’re talking about. Even when they don’t have the answers to my questions, I know I can trust them to find out and not lead me down the wrong path. I know they care. 

MD Anderson has already saved my life once. Nobody knows my mouth better. I appreciate that they’re still trying to help me live well. And, they’re just a phone call or a MyChart message away when I’m not. 

Until my first survivorship appointment, I’d never even thought about the concept of “after-care” as something I should want. I didn’t know what that meant or what it would look like. But it’s wonderful to know that my care didn’t stop just because my cancer did.

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