My mom had oral cancer, treated with radiation for 2 tumors on her mandibles more than 2 years ago. She has since gained the weight back, but is left with little to no saliva, difficulty swallowing, lots of tooth decay (worsening by the minutes!) and what to seems to me lots of pain in her mouth and her tongue flares up and swells. I have been reading some of the posts and this all seems normal, but this far out? I guess I am concerned that she still relies heavily on narcotics for pain, and this combined with history of alcoholism (sober from alcohol for 7 years)makes me wonder how much pain is she really in? How much is she taking that mght not really be helping? I also know her nutrition has a large sugar component because most soft easy to eat foods are high in sugar. I realize sugar slows healing. I understand no one can know how much pain she is in, but is is normal to have a tongue that swells and a mouth that hurts so much that you are still using fairly large amounts of narcotics? Are there any tricks to reducing mouth pain, tongue pain/swelling?

Kristin,

Radiation, lack of saliva and a high sugar content diet can all contribute to tooth decay if not carefully monitored. I'm not sure how much of her oral difficulties are the result of just post-radiation symptoms.

Ask the dentist if he is familiar with the difficulties with oral cancer patients. If he hestitates, I'd run to someone else; at the very least, for another opinion.

David

Kristin,
No it's not normal to be on pain meds for 2 years. The doctors need to find the cause of the pain and treat it. Tooth decay is bad news if she has had radiation. An extraction, post radiation, can cause many complications such as Osteoradianecrosis. She needs to see a dentist every 4 months for cleaning, use dental trays with flouride treatments regularly and practice rigorous dental hygiene. This is a lifetime risk after radiation. Like David said, you may want to find a dental oncologist -especially if extractions are required.

The tongue swelling doesn't sound right - when is the last time she saw the ENT or head & neck surgeon and what does he say about it?

I have 9 years sober myself - alcoholics suffer pain too.

Speaking of flouride treatments, do all of you use the flouride trays nightly? We did get a bit of a chuckle when Tom's dentist put the words "15 minutes each night forever" on his flouride prescription He might not like it, but we are so grateful that his teeth are all strong and none needed to be removed.

Nicki

Hi Nicki,

I use my fluoride trays nightly, too. I brush with a prescription toothpaste (has 1.1% fluoride) and use the fluoride gel in my trays for 15-20 minutes. I, too, was fortunate in that I didn't have to have any teeth pulled and I'm doing my part in seeing it stays that way! Tell Tom to keep up the good dental routine - it'll pay off in the end.

Hugs, Nancy