Living With Oral Tongue Cancer Side Effects Every Day

Dry mouth and fibrosis remain among the most impactful long-term side effects for Stef Gayhart following treatment for oral tongue cancer, shaping her daily routine and requiring ongoing management strategies.

Gayhart said dry mouth began during radiation therapy and has persisted continuously, affecting her speech, diet and how she eats. She manages the symptom by always carrying water, using products like Biotene spray, trying lozenges and sleeping with a humidifier to ease discomfort, especially overnight.

In addition to dry mouth, she experiences fibrosis, which causes tightness in her neck and shoulders. To manage this, Gayhart incorporates daily stretching and periodically returns to physical therapy. She has also explored supportive approaches such as massage, acupuncture, dry needling and cupping to maintain flexibility.

Gayhart also uses a Flexitouch pneumatic compression device to help manage lymphedema and related fibrosis. The device, which includes a chest garment and headpiece, runs a 32-minute session during which she can rest or do light activities. She said it helps reduce swelling and improves mobility in her neck, making it an important part of her routine.

Transcript

As a survivor of oral tongue cancer, what lasting side effects have had the biggest impact on your day-to-day life, and how have you adapted to them over time?

The first one that immediately pops to mind is dry mouth, which is a side effect of radiation therapy. That’s been with me 24/7, every day, probably since halfway through treatment and continuing after radiation. It’s difficult for me. I always have to carry water with me. It affects my speaking, what I eat, what I can safely eat and how I can safely eat. But I deal with it — like I said, always having something to drink with me, which is probably healthy anyway since I’m getting those 64 ounces in every day.

I also use different medications or therapies. Biotene has a spray that I use, and I know there are different types of lozenges and things like that. I’ve tried all of them, and sometimes those can help, especially overnight. I also sleep with a humidifier to help with that.

The other big one for me is fibrosis. I have a lot of tightness in my neck and shoulders, so I try to keep up with daily stretches. A lot of my friends and I joke that managing the side effects and trying to stay well is a full-time job in itself — remembering to do the stretches and all the different things. If I want to get a massage or maybe try acupuncture, it all adds up.

For now, I focus on doing the stretches, and every once in a while, I’ll go to physical therapy if I need it. I’ve also tried dry needling and cupping and all sorts of different things to keep everything moving.

I also use a Flexitouch device for my lymphedema, which helps with the fibrosis. It’s a pneumatic compression device. A lot of people think of it for lymphedema in the limbs, but they make one specifically for head and neck. It’s comprised of a chest piece — it almost looks like a fishing vest you zip up — and a helmet. I always joke that I look like Magneto from “X-Men.” You turn it on, a full therapy session is 32 minutes, and you just kind of relax. It’s actually quite nice. If you have 32 minutes to sit there, you can read, scroll on your phone or answer emails. It really makes a huge difference in the lymphedema that builds up, and it also helps with flexibility and keeping my neck muscles moving.

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