Hello! I know that dental care/fluoride treatment has been discussed a lot on this forum, but I have kind of a general question I'm hoping someone could help me with.

The dental oncologist prescribed me to just use the Gel-Kam fluoride daily (in dental trays) for life. I am approaching 2 years post treatment, and so far I haven't had any real dental issues, aside from a couple of small cavities.
However, I noticed the amount of fluoride in the treatment is actually very low (on par with the amount in my toothpaste), and I have seen other people on the forum discuss that Gel-Kam isn't enough. I also get pretty bad dry mouth, especially at night.

My question is this: if I haven't had any issues so far, should I assume that it's working for me and not worry about changing to prescription, or is the tooth decay a very gradual thing that could already be happening now, and I need to switch ASAP?

My dentist said my teeth look good and when I asked him about switching, he said it wasn't necessary. However, he is not a dental oncologist so I figured I would consult with my team of experts here before I push the issue further

Thank you!

Always remember that we are not doctors of any kind just battle tested survivors. With that in mind I would seek out a dental oncologist if you question the advice of your regular dentist. I was told by my dentist that I could stop using my trays after 5 years. My teeth were good before Tx and have remained so 7 years post Tx.

Thanks David that's good to hear! My teeth were very good before also - I wasn't sure if it was possible for teeth to remain healthy after treatment. Being 24 at diagnosis - trays every day for the rest of my life is a long time. I know I need to see a dental oncologist, finding the time is just difficult these days.

Emily, I sympathize with you at your age even though it's been awhile since I was anywhere near it. My dentist (good one so I've always thought, but not a specialist) has indicated to me that in his opinion I only need to use the trays a few times a week. The rest of the time I could just brush with the Prevident, which is what I use. However my RO said to continue with the nightly trays. I'll ask her again (RO) when I go in for my 5 year checkup, which should be in the next few months. In these matters I tend to defer to her as she's always been right and takes things conservatively. My fellow David's advice above is as always spot on.

Emily,

Perhaps being 24 at diagnosis is one reason why you want to take extra special care of you teeth now and continue with the fluoride trays. Radiation does a lot of damage to your mouth, teeth and jaw and it can take years to show up. Dry mouth can lead to more cavities and you mentioned you've had a few small ones (I assuming since RT?).

Everyone is different, so what happens to one person can be totally different that what happens to you. I would continue the trays and toothpaste for now, but discuss more with your doctors.

Trays - One comment I've heard about fluoride trays is they may not be all that effective at minimizing dental cavities in post rad patients.

The rational goes most of post rad tx cavities hit along the gumline. The trays put fluoride on the top surface of the tooth so it might not be helping the area of cavity formation.

Where I am on this topic is to focus primarily on the teeth along the gumline and the gums themselves, rather than the other parts of the teeth. My routine is to brush first with a regular toothpast, then waterpik thoroughly, then come back with a brushing using prescription fluoride paste. Leave it in my mouth then proceed to bed.

Don, I had demineralization, white specks, which are pre-cavities, which started mainly on the tips and middle of the teeth, and then progressed from there to break, chip, wear down to the gum line, in a relatively short time. Now they're more near the gum line with no tooth left. I think enamel, acid erosion was a factor too, as well as chemo, radiation, illnesses, and my medicine regimens, that played in deterioration of my teeth, so was maybe multifactoral, and not just from radiation.

Paul,

It is great having your wisdom here but your case is so far beyond what 99% experience and the battery of therapies, I doubt there is a single breathing research scientist who would be able to draw any conclusion about anything from you. LOL

Except maybe that the glowing comes from radiation therapies. :-)

I only had radiation to my mouth once, at 70Gy, in 2011. The rest afterwrds was only to my cervical neck, so that didn't effect my teeth any further.

Thanks for all of the insight. One question I have always wondered is whether it is possible for the effects of radiation to be reversed at all since I got radiation at such a young age (and thus my body is more able to regenerate), or if they will just be even worse for me since I have to live with them for so long. I tried to ask my ENT one time, but he kind of just said we would worry about side effects when and if they happen. Does anyone know if any studies about this?