Hi, I am a youthful 80 year old woman right in the middle of radiation treatments at Moffitt Cancer Center in Tampa, Florida. A squamous carcinoma was surgically removed from my lateral anterior tongue in February, and PNI was found in the biopsy. We're now doing radiation to the tongue and the lymph nodes, and I'm at the point where swallowing is very painful and I'm having trouble eating. I'm thinking that accepting a feeding tube might actually be better than struggling against these mouth sores. Does anyone have any experience that can help me?

Hi! Some of the other patients here can tell you about the various kinds of feeding tubes ... I think the ones you can use once you already started treatment are different than the ones they install before you start treatment (because of not wanting to put you through a surgery right now). But what you are experiencing is definitely a normal thing to be experiencing, and you're right to want to get on top of it. And be VERY proud of yourself for getting this far!

I had the PEG tube, I think ... a stomach one, inserted via a simple surgery prior to the radiation and chemo. We chose that mostly because I already have / had issues with food intake, and it seemed better for my situation than taking chances. I really didn't want to do it, but it was the right choice, because it was amazing how quickly our bodies can go from "I'll put up with this" to "Never again!". Some folks get all the way through, and during the continuing burn even after rads stop, without needing the help ... but most of us end up needing one kind of tube or another.

If / when you do this, one big thing to keep up with is swallowing ... sips of water, whatever. Just to keep the reflex in practice. There is therapy they can help you through after you recover, but the less of the reflex you lose, the better you will recover later.

Christine is good at chiming in with nutrition information, and there's a whole part of the forum dedicated to that information ... you might want to browse through that section and see some of the options open to you while you wait to talk to your doctors.

((hugs)) You can do this!

Kristen

Hi Tiny, and welcome!

Another member with tongue cancer just posted about PNI found in the post surgical biopsy. Hopefully you get a chance to read the post, and respond. I’ve had PNI three times with my cancers, and was able to beat it. I’m not sure who is treating you at Moffitt, I’ve never been there personally, but I do know the chief of radiation oncology, Dr. Louis B Harrison, so if you cross paths, give him my regards as he was my Dr in New York, and is the finest around!

I’ve had two peg tubes. One was when I was hospitalized after my first treatment, and had it until my cancer was found clear seven months later. The second was put in two months later for a recurrence, and had it for about five more years, although I used it intermittently through various treatments through the years. These days, they want most to do without a peg tube or similar, to continue to swallow on their own, minus other issues requiring or possibly one, but if one waa suggested, there must be a reason? It’s better to hace one put in before treatment starts to prevent infection, otherwise one can be out in radiographically or a nasal tube! Even still, they want you to swallow as long as you can, and dry swallow after that. If I had to do it again, I would get a peg tube! You will most likely still struggle, but maybe not struggle with consuming as much as the proper amount of nutrition, but such issues with mucocitis, and others, can still persist.

There are a bunch of items to help with possible radiation treatment ailments, if they weren’t already suggested, like toothpaste, mouthwash, neck cream, etc. Just ask!

Good luck