Team,

In a panic about teeth now. Starting work for 2 crowns in a.m. My dentist says I'll be fine for radiation after the crowns are done, but I don't think he has much, if any, experience with head-radiation patients.

I've read here that some get all their teeth pulled, some problem teeth and some back teeth. I've also read some horror stories of jaw destruction down the road because teeth became a problem.

Do most ROs refer to a dentist specializing in cancer patients? I contacted my local dental assn, and they had no idea how to find such dentists - suggested I call a few oral surgeons to see if they knew of any.

What have some of you done, and why? I'd appreciate your input.

Thx,

- Pam

My MO said we may mess up my teeth, but not to do anything up front since mine were in good shape. RO did not bring it up other than to look at them himself.
I have had no problems since treatment other than some sensitivity. The feedback I got was that if you had good teeth it would not be a great problem. So far so good for me.

Find a specialist who is familiar with oral cancer patients. I think that type of dentist is called a Prosthodontist.

Some people who dont have the best teeth will have them pulled before tx starts. Others will use a floride tray and be meticulous with their dental care. Sometimes this doesnt work and some patients will lose their teeth due to radiation damage. Thats what happened to me.

Everyone is different and can have their OC be at different places. Radiation's focus would be at all different angles.

There was a time, prior to IMRT, where the radiation path was broader and the resulting damage was greater where it was common for the doctors to recommend pulling all the bad to marginal teeth which usually meant pulling them all as the previous typical oral cancer candidate was a long term tobacco and alcohol abuser with poor oral hygiene practices. Since the use of IMRT we have also seen a different "typical" oral cancer candidate where there teeth are usually not bad to begin with so most now only recommend pulling any that need to be pulled and protecting the rest with daily fluoride treatments usually beginning prior to the beginning of rad.

Thanks, guys, for your input. Luckily for me, some of the financial pros where I worked as an admin assistant over 5 years ago found out about what's going on with me. One called me up and was insistent about wanting to do something. I told him about my dental quandary, and he got back to me right away with the name and number of his dentist, who has experience. I saw him yesterday, and he recommended I keep all my teeth, so the money I just unloaded (and next pile I'll hand over near Christmas when I get my crowns) won't be yanked out of my head at the end of the year.

On the water pik front - I asked both dentists, and was given a "go ahead and use it, but be careful". My dentist recommended a low to med low setting only. ("Lots of water pressure can actually force bacteria deeper down than it would penetrate on its own.") The "experienced" dentist also recommended something like a Sonicare automatic toothbrush because some people have fatigue, and the brush does the work for you. I think I'll hold off on buying that, and trust that I won't be that fatigued (yes, fingers are crossed, and I did knock wood).

Hi Pam,

I have been using toothpicks, in a double toothpick holder, to run along my gum lines as part of my morning dental routine.
I also use toothpicks to press between my teeth (again in the morning, using the same type of double toothpick holder). I then clean between my teeth at the gumline (molars only) using one of those small round brushes. I use a manual toothbrush in the morning. Note that my periodontist liked the toothpicks and my regular dentist liked the small round brushes (I had a root planing several years before my cancer treatment).

In the evenings I floss. I use a Sonacare toothbrush in the evening.

I recall my feeling some pain in my gums during radiation treatment due to pressure, but I'm quite sure I kept up this routine, except maybe just doing lighter manual brushing only due to painful gums.

Of course, I also used (and continue to use) sodium flouride twice per day (using trays).

I am more than 3 years out of treatment, and continue to get kudo's on each 6-month cleaning.

So, I did and continue to do nothing super fancy, but so far my routine has been effective.

Best wishes,

Chris

Chris,

Thanks for the info on your regime. A couple of questions, if I may:
Double toothpick holder? Are these found with other dental care items?

Which Sonacare do you use?

- Pam

Chris, you made the right decision. My first RO told me I'd lose all my teeth and painted a horror story. I dropped him for his lack of bedside manners - he was laying this on me the day after my surgery. Two years out from tx and no issues with teeth.

Pam:
My husband was diagnosed with SCC IVA BOT a little over a year ago. He also received TPF (Taxotere, 5FU, and Cisplatin) x2 and then 35 RT with weekly Carboplatin, Erbitux, and Taxol. He developed the worst mucositis the doctor has ever seen so trays were out of the question as was any kind of mouthwash. he had 12 extractions prior to treatment and it was put to us like we had no options other than removal. This came from MO, RO, and dentist. since treatment ended, he produces zero saliva. he rinses umpteen times a day and brushes 3 or 4 times but his gums continue to recede and cause abcesses. He has lost 3 teeth in the last two months. We are looking for a dentist ourselves with HNC experience as we think he is going to have to have all teeth removed and dentures.
**** ON A HAPPY NOTE **** Had PET scan in July and MO used the words CURED so we are going to take him at his word.

Traci,

Thanks for writing - I'd trade teeth for CURED any day - good to hear. Paranoid now, because I've got some swelling next to one of my temporary crowns - don't get permanent crowns until Dec. 23 - can't get fluoride trays fitted 'til then.

I think perhaps its time for one of our experts to chime in here and explain this thing about teeth removal.Its always been a bit of a mystery to me as we were told Rob had to have a dental check up and clean prior to radiotherapy but extraction of teeth was never mentioned.It seems to be coming more and more routine,which i find quite worrying.What is the science behind this Brian/David/Gary?

Actually Liz I think it's less of an issue today than it was say 5+ years ago or when IMRT became the standard radiation Tx over it's predecessor RT which produced far greater damage to the teeth and their blood supply. We still see it recommended, one because the teeth are so bad going into Tx and two because of continuing conservative Tx approaches especially beyond the CCC level.

This is just my take on this issue and by no means is backed by anything other than my experience on this site and my conversations with Moffitt and my dentist so that and $200 will get you a cup of java.

Traci,

Great web site.

Is he using the trays on what teeth he has left?

Man they hit his lips/mouth area hard.

What David said is correct to my knowledge. Back in 1997 when I had XRT radiation, they routinely pulled any teeth that were in the field of radiation, sometimes regardless of condition. I had my 16 rear teeth removed which my subsequent prosthrodontist who specializes in oral cancer patients said was totally unnecessary. I have since had to have all my remaining teeth capped despite meticulous dental care but I'm not in danger of losing any of them. These days they only remove teeth that are in bad condition and might need extraction at a future date.

Eileen

Mine were pulled to prevent tooth decay and infection that they said would be in my mouth if I kept my teeth. I sure wish I would have said lets risk it. The seed implants in my tongue were the main reason to pull them. I wish I would have refused implants too.

Hey David,
Unfortunately no - he is not using trays on his teeth because he has an area on his tongue that is still extremely sensitive to anything hot, spicy, minty, etc. Ive got him brushing with children's Crest using a Sonicare toothbrush and rinses with waterpick it seems like 15 times a day minimum. He is still not eating too many solid foods and is mainly eating soup and about a case of Ensure every 2 days. The amount of crud that comes out of his mouth is incredible seeing that there are no food particles really even entering his mouth.

I received an email from another member that has given me his oral surgeons name over at Emory since it is down the street and plan on calling him tomorrow.

Thanks for the compliment on the website. I need to update it and post some pictures of him now. What a year!

Traci,

Try Biotene toothpaste. It will be better for him.

Also look into Carnation IB VHC. At his consumption rate it will probably be cheaper and it will definitely reduce his drinking time.

Do ask his dentist about the trays. There are different fluoride products and maybe one won't cause him any irritation.

In addition to Biotene toothpaste for brushing, I use Gel Kam Fruit & Berry fluoride in my trays. This is not minty and does not burn at all. For me, the flavor also helps produce saliva. Might give it a try. 12 years out and I still can't do anything minty.

Take care,
Eileen

Eileen,

That's the first time I've ever heard of that variety. I almost thought you were kidding so I did look it up. Interesting. Is there a little prize inside each box?? lol

LOL! I only wish. The suggestion to use Fruit and Berry came from the dentist that had my 16 rear teeth pulled unnecessarily and then refused to make me partials for a year. The Fruit & Berry was the only good thing I got from him.

Take care,
Eileen