Hello All,
Is it possible for mucositis to still be in your mouth three months after radiation? My tounge has always burned ever since radiation but now I have this sore spot on it where it keeps hitting one of my top teeth that has has a rough spot. It's the tip of my tounge and now it has stuff on it that looks like the sores I had in my mouth at the end of radiation. Before I called my oncologist I wanted to ask you all. Thanks

My mucocitis lasted for about 4-5 months after the last radiation treatment, but even after the sores themselves left, I had burning sensations on my tongue and other areas of my mouth off and on for some time. Even today, 5 years after treatment, that occasionally still happens. I always look to see if it is something there, but there is never anything visible. With xerostomia I am told, the papilla on the tongue get irritated very easily and it will be a life long occurrence, but these are irritations, not actually sores like mucocitis.

Thank you for the information Brian. I figured the burning was part of it all but it makes me nervous to have the sore spot. It looks as if one of my taste buds is swollen and the "stuff" on it has the same appearance as the sores I had during radiation. I haven't had any on my tounge for about a month now so was surprised. This is the second day it's been there. I found it yesterday when my tounge felt sore, I was surprised how quickly it appeared. Then by mid-day the "coating" on it was hardly visible and I couldn't really see it. When I got up this morning it was coated again but now, at 2:30pm, I have to look close to see it. Guess I will wait and see what it's like on Monday. In my mind I know it's mucositis/irritation. But my paranoid side is convinced it's cancer on my tongue. I hate what cancer does to a rationale mind.

The good news is that you can't see your taste buds, so what you are referring to are the papilla on your tongue, of which there are thousands. It is not uncommon for one of them, or a small group of them to become irritated, from everything from rubbing your tonge against the backside of your lower teeth (subconciously) to irritating them during eating. Your tongue should be brushed regularly like your teeth, and if something is building up on it, this should remove it. The questions become, does it actually develop into a sore that you can see, or does it develop a white coating that is visible and returns after brushing.? The sore, like a small ulcer is something you really have to have checked out. A white coating could be something as simple as Candida, which while it needs some treatment, isn't a big deal or anything to worry about.

Thank you Brian. This sore looks so much like the ulcers I had all through my mouth during radiation and for about 6 weeks after ending. They cleared up and all I have had is a very sore mouth. So I wasn't sure if a new one can crop up weeks after the initial ones resolved. You're right when you say it's the papilla that are irritated, the little bumps all over the top of my tongue. This spot has a sort of translucent look to it, not white actually. And if I scrape at it with my fingernail, some of the stuff will come off. I recall the docs always scraping at the mucositis in my mouth with a toungue depresser while I was having radiation. I have been eating more food by mouth this past week to ten days and it seems the more I eat the more sore my mouth gets. Very frustrating! I will start using the tube again today to give my mouth a break. I was hoping to have it removed at my appointment Nov. 4th but I think I need to keep it in. Also, my lower lip is still so sore and burned feeling, is this common? It seems to even be swollen.