I am here to support a good friend who has had recurring tongue cancer over the course of 15 years. I know none of the clinical details. I am, with her knowledge, doing research to help her understand what to expect after radiation. She is extremely anxious about pain and the potential need for a feeding tube. Her radiation starts today; she underwent tongue reconstruction and removal of numerous lymph nodes a month ago.

The best place to start is at the Main Site of Oralcancerfoundation.org. The information there is vetted and extremely detailed.

Hi tascott2,

Welcome to OCF. You are a fab friend to be doing this research. I had a great friend who found this site for me, and it's really helped me to get through my year of treatment for tongue cancer.
Radiation sucks massively. It makes you tired, more tired than you can imagine. I found that during the last couple of weeks I felt like I had been to a 4 day rave without any sleep. I had a dull ache all over my body. All I wanted was comfort. That wasn't the worst part. It's the mouth sores/ulcers and mucus production. The sores appear because you are having the equivalent of a sun bed blasting in your mouth. The mucus appears because your mouth is sore. Things that helped were rinsing my mouth out with warm water mixed with salt and bicarbonate soda. It works because it has healing properties and breaks down the mucus. You spit out gunk a lot. Using a water pik with warm water really helps to remove the thick ropey mucus that comes out. Sometimes I would stand in the shower allowing the warm water to clean out my mouth.
Your taste-buds get burnt so your taste goes haywire. I found that everything tasted salty. The only thing that counteracted the salt, on a temporary level, was a mug of lukewarm black coffee.
Towards the end of my rads I lost my voice for a few days, and then I had the worst sore throat. I ended up drinking frappucinos in winter to ease my throat.

After rads, the mucus continues for quite a while. Then comes the dry mouth stage. All day and night. Your lips stick to your teeth. Sipping tepid water and keeping up with the salty water rinse helped.
The mouth sores do heal, but mine took quite a while to go. Magic mouthwash is a great product for you guys based in the US. You swill it around the mouth to numb the sores so that eating can be done.

At some point you lose the ability (or desire) to eat solid food. Nutrition shakes such as Ensure, protein shakes etc are the way forward. On OCF we say you need 2500 calories a day. It sounds a lot, but rads and healing burns a lot of calories. If you burn too much, you won't heal properly. So please aim for that. There is a good post about foods to eat here. This helped me loads.You are also need a lot of protein to heal. My dietitian told me to have double the daily amount. So 100g of protein is require. Whole milk is a great source of protein. If your friend uses Ensure, use 2 as a base for smoothies as they have 300 calories in each bottle. I added frozen fruit, protein powder and protein yogurts into my smoothies. The biggest smoothie I made had 75g of protein and around 800 calories.

If she does end up with a feeding tube, it isn't so bad. Maintenance is really easy. If you're with her as her support, then you will be shown how to clean it and how to put liquids in. It's so simple. It's a good back up if swallowing becomes an issue.
As for swallowing, your friend needs to maintain her swallow. Ask her to speak to her speech therapist about tongue and swallow strengthening exercises.They will make sure her swallow stays nice and strong.

As for pain, whatever pain relief she is given, take the maximum dose of them all. I was told by my pain team that the pain relief is more effective and longer lasting when the full dose is taken. Her mouth will be sensitive to temperature, I found ice was a complete no no, nor was anything hot. Room temperature or tepid were the only different temperatures I could take. Even my gums were sensitive. Speaking of sensitive gums, minty toothpaste was an utter nightmare. I ended up using a children's strawberry toothpaste and a manual brush (I usually have an electric toothbrush), then rinse with warm water. Children's toothpaste has less fluoride in it, so I cleaned my teeth 3 times a day.

I hope this helps both your friend and yourself have a greater understanding.

Hi tascott2

Great info already shared here. I would add a couple ideas. One, keep a journal of all your food you eat every day with the goal of 2500 calories. Having to write it down and report it to yourself and your support team keeps you accountable. Weigh yourself every day at the same time in the same clothes and write it down. Again, accountability. May I also suggest you keep a journal of how you feel, medical notes, questions, etc. Take it to all appointments so when a thought or memory strikes, you can capture it. Use it with the doctor appointments to make sure you get all questions answered. Eat heavy now, try to gain weight during the first 2-3 weeks of treatment so you have reserve going into the last weeks.

I also suggest staying somewhat active. If you normally walk or jog or bike, step it down a notch or two but still do it when you feel OK. Don't burn too many calories but I would resist the urge to stop exercising. Walking around the block with a loved one can help your mood.

Thank you! Next stop!

I can't thank you enough for taking the time to relay all this info! Would you agree that it's better for my friend to have as much info as possible - as opposed to worrying and imaging the worst?

Thanks you so much for your reply. I'm concerned that getting adequate nutrition will be an issue for my friend. She was slender to begin with and lost quite a bit of weight after surgery. THe good thing is that she is fit and active - I will encourage her to stay so and to 'bulk up'! Thanks again.

Edited to add: Is it fairly 'standard' to require a feeding tube post radiation?
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Has anyone used meditation for additional pain relief and anxiety management during this whole process? TIA!

It's up to each person about how much information they want to know. For me, I looked up my surgery, what I'd look like on the table and what a tongueless mouth looks like. I read so much information in here and looked up pictures. The only thing I forgot to look up was the picture of an arm after the muscle is removed for reconstruction, so it shocked me for a second when they took off the dressing.
The information helped me ask relevant questions to my team, and it prepared me for everything so I didn't worry. I was told I was one of their calmest and informed patients. It also meant they gave me loads of information during my visits, and the reasons why things happen or why they wanted me to do certain things (like eating extra protein)

Oh and you're very welcome. OC is the gift that keeps on giving, so being able to help people through this is something I'm happy to do.

Your help to others here is invaluable. Glad your doing well Dizz.