I've read enough here on the OCF to realize that oral cancer patients need expert dental care. Prior to treatment I took your advice and had my teeth in perfect shape to begin. Now that I'm finished with treatment there are a couple of things I need looked at and a good cleaning.

My question here is, how does one go about finding a dentist that is aware of how to treat OC patients (along with the decrease in saliva and all those other issues we bring)? I would return to my previous dentist, but he and the partner seem to be on a sabbatical as I can only leave phone messages.

This leaves me to pursue the possibility of finding another dentist. I don't want to pick one out of the yellow pages. I spent time looking at the yellow pages but wonder if there's a dental referral service available to help us FIND dental care that will meet our needs. I do plan to ask my CCC for perhaps an idea on how to find a dentist, but I just really want to be sure that I find a professional that will keep in mind my dental treatment might need to be adjusted for someone who's had radiation and chemo.

Thanks...
Jen

Jen, at over two years past treatment, we finally realized that our regular dentist wasn't very knowledgable about post-radiation dentistry. We talked to our ENT and he suggested a periodontist/dentist that is very good with radiation issues. We were a little surprised that it wasn't suggested to us at the start - but better late than never.

Anyway, you are probably correct that your CCC is your best resource for locating the right person. You might keep the idea of a peridontist in mind - as they are good at the soft tissue problems that radiation can cause.

Best,
Anita

Thanks. That is exactly my concern.. the "post-radiation" issues. While at the last dentist, I asked if they had any patients who have undergone cancer treatment. Although they do, I think they didn't realize I meant "head and neck" cancer patients. I know if I call around, I'll probably get some receptionist that will just tell me what I want to hear.

I was wondering though if there's a dental referral service either on the internet or via phone where you can specifically ask for a professional that has training or experience with treating head and neck cancer patients. This would be far easier.

I don't need some guy fooling around with my mouth that doesn't have a clue. I'd rather make a good choice that proves out to be the RIGHT choice.

Jen

hey Jen,

a support group that i attend had a local dentist come in and give a discussion about teeth and radiation issues. he is just naturally curious about this topic and has been researching it and working with some of his patients. what a surprise it was to find a dentist who knew much!

so it seems they are out there and you might get lucky and find one in your area. ask some of the cancer support groups if they can help.

on the other hand, i was on travel about a year after i finished treatment and needed to see a dentist about a problem that arose. i used email to contact the very special dental doc at the hospital where i had been treated. he reviewed his contacts and told me of a specalizst in a nearby city.

good luck,
keep them clean,
cu,
larryb

Jen,

Here are some opinions from a dentist:

The best source for a new dentist is a referral from a satisfied patient. Because of your special needs, as an oral cancer survivior, your best bet is to check with patients that also go to the same CCC that you go to. The center itself may not do referrals, but they may be able to get you in touch with other patients, if you don't know any of the other patients.

The yellow pages and referral services probably never address the needs of the cancer survivor and only present those things that the dentists pay to have listed.

Your ENT, or any ENT, if you don't have one, may also be a good source of referral.

As far as your present dentists are concerned, it is unconscionable that you cannot reach them. A sure sign that you need a new dentist, anyway.

Dentists are not taught in school about the special needs of cancer patients. They must learn on their own and honestly, most don't.

Good luck and if there is anything you think I can do for you, feel free to email me at [email protected]. I wwill do my best.

Jerry

My ENT usually does not have much time to spend with me in regard to answering questions. However, my next appointments this month are with the chem and rad oncologists. They are a bit better about spending time to answering questions.

You are so right about this being a "special needs" case. I really don't want to be calling around the yellow pages trying to explain my special needs and having a receptionist tell me "oh sure, we have cancer patients" and not having a clear clue as to what my question was about.

There's hundreds of dentists in my locale. I would just like to find the right one that can handle these sorts of issues.

I'm still pondering why everytime I call my current dentist, I cannot get ahold of a live person at the other end. It's odd. But at least it's spurring me on to try to find someone in the dental profession that can take care of my needs.

Thanks,
Jen

Jen, I was referred to an experienced dentist by my rad doc. You might also call the nearest dental school for a referral. You are absolutely correct about needing to see someone who has treated oral cancer patients.

When I went to my first check up after my surgery, I was given names and numbers for a physical therapist and a dentist. Ask your doctors, they should have that information.
Take care,
Minnie

Is there an oral surgeon on the head and neck cancer team at your CCC?

The way I found my dentist was a referral from my ENT but it turns out, had I asked to speak to an oral surgeon who is affiliated with the hospital where I was treated, I would have ended up with the same dentist (instead, it was the dentist who refered me to the oral surgeon). Unfortuntely, my rad oncologist, because the rad medicine department is new at the hospital and he is from Roswell Park in Buffalo, wasn't any help.

Jen,

I worked as a dental hygienist in the department of General Dentistry at a CCC in Philadelphia. You should check to see if the hospital where you were treated has a department of dentistry. We treated lots of head and neck cancer patients. Make sure you see an attending dentist, not a resident who will only be around for a year or two.

Barb

If I had listened to the dental oncologist at UCSF they would have pulled ALL of my teeth! I just go to my regular dentist and educated him on my needs, which are actually pretty simple. NO extractions or I will have to do HBO therapy prior. I increased my cleaning schedule to 4 times a year and he makes repairs sooner rather than later. I had to educate them about ORN.
They are very careful. His son just graduated from UCLA school of dentisty and they had a section of the course that dealt with oncology patients.
I am almost 3 years post Tx now and my teeth are doing fine. I still use my dental trays with flouride occasionally and practice scrupulous at home dental care.

I asked my chemo oncologist today for information on a dentist in my locale that might have experience in dealing with head and neck cancer patients. Hopefully, they will get back to me.

Thanks for the heads up Gary. About an hour ago my previous dental office finally called back. I scheduled a cleaning (which I believe they can handle) but should I need to get anything further done, I might decide to get another dentist.

The receptionist once again told me that they do handle cancer patients, but handling someone that is technically a cancer patient doesn't always mean they are aware of the special circumstances of someone who has had radiation to the head and neck area.

Just as a general guideline, the main thing I have to be on high alert for is if they do an extraction right? Otherwise normal fillings should be okay?

Thanks, Jen

Hi Jen, extractions are to be avoided at all costs. Filings, crowns, etc. are perfectly ok. Make sure to ask the hygenist if they clean below the gum line - much to my susprise I learned that some don't. I take it you have dental trays and are doing flouride at home? Have them give you a flouride treatment everytime you go in (they use much stronger stuff - bring your trays with you).

The only special circumstance is that we have a 10% risk of ORN if we have to have an extraction. Make sure that they know it is imperative that your teeth be perfectly maintained as possible. Any good dentist should be able to accomplish that. I had full mouth x-rays done a year after treatment to insure that nothing was rotting out where I couldn't see it.

Also use the floss that has the candy cane image on it. It's a lot like yarn and very easy on the gums.

Hi Jan,
I had my surgery done at the Mayo Hosiptal in Scottsdale, Arizona. The Mayo System has just hired special dentists who work very carefull with the head surgeon and are making great progress with persons who have had radiation etc. check them out. I know you won't be sorry.

HI,
I had SSC 7 years ago, tongue resection, neck nodes removed(2nd layer positive) and 42 radiation treatments. Mouth care is essential. I go routinely every 2 months and have many fillings at the gumline and many caps because my teeth are deteriorating. My dentist who has been very good has finally said I need a specialist because my gums are turning into mush. My rad MD suggested a prostodontist at Sloan in NYC. My insurance is giving me a hard time since he is not on my plan?? I called 2 oral surgeons that Cigna recommended and they dont have a clue about post radiation effects. I have been able to keep my teeth so far with water pik, sonic care tooth brush and flouride. If some of you are very sensitive brushing , I found brushing in the shower was the best.(shower saliva) and definately get a water pik! If anyone knows a dental oncologist in NJ let me know. I have an appt with Dr.H at MSKCC in 2 weeks for a consult. (Hopefully insurance will cover)Maria

Got a ?. What is ORN? HBO is hyberbaric right?
Thanks, Mary

Mary,

I think ORN is OsteoRadioNecrosis which basically means bone rot due to prior radiation--it can happen when the jaw bone gets cut into or exposed to the air during dental surgery and its a nasty nasty thing to get according to my oral surgeon. The risk of it also is there, once you have had head and neck rad, for the rest of your life. It does not decrease over time.

Nelie

Hi Mary,

Nelie is right on with the definition of Osteoradionecrosis. Basically bone that has received doses of radiation may lack the ability to repair itself after trauma. Radiation destroys the blood vessels in the area causing a reduction of circulation to the area of oxygen and other nutrients. This then will prevent normal healing in that area if the bone is injured.

Hyperbaric oxygen to the area will stimulate new blood vessel growth and therefore stimulate bone healing.

Hope this has been helpful.

Jerry

HI
I had a question about dentistry and oral cancer. Somewhere on this board I had read about a special light that some dentists can use for their exams on paitients of high oral cancer risk. From what I recall the light is able to pick up on abnormal type cells in the oral cavity. What type of equipment is this and how do you find a dentist that uses it?

Thanks
Tami

Tami,

I don't have any personal experience with it, but if you search this site using the word vizilite, you'll find quite a few posts about it.

Cathy

Thanks Cathy-I found it with your help!
Tami

Hi All, on the dental subject, has anyone had their front teeth replaced with crowns? I currently have veneers on front four teeth, (had them pre cancer), anyway, my teeth under them are decaying,veneers are very worn down, dentist said they have to go,he will either replace with more veneers or crowns. Thanks, Carol

I don't like to speek in absolutes, but if they are not going to go below the gums you should be OK. Additionally, uppers in the front are less likely to be an issue. I have had 2 upper wisdom teeth removed and some crowns on the bottom done with no problems. Just make sure your dentist knows what he is doing. I used the oral surgeon that did my jaw resection for the wisdom teeth and my regular dentist did a stint at MSKCC. My only concern would be a surprise if he has to grinds down the teeth for crowns.

Hi, thanks for your post. The dentist that will be doing the work is my oral surgeon's dentist and I feel pretty confident in him. Have a great day....Carol

Hi Carol,
They pulled all my rear teeth in 1997 prior to radiatuion, leaving me only 6 uppers and 6 lowers. To make the partials, they had to crown the 4 end teeth. Despite careful dental care and flouride trays the remaining front teeth became very porous, so I had the other 4 uppers crowned last year. They look beautiful if that is your concern but it took the lab 5 tries to get them correct. My concern was the fact they have to grind them down to nothing to do this and what happens if there is decay. Thus far I have had no problems with any of them and will proabably have the bottom 4 capped sometime in the next few years as they are beginning to have problems. My partials and caps were done by a maxillifacial prosthodontist in Princeton who is MD Anderson trained. Be certain your dr is familiar with the special problems us cancer patients face.

Take care,
Eileen

Hi
I had a question on how long should my Mom wait to have her partial evaluated from her dentist. She had completed her treatment at the end of August and the partial still does not fit. It seems to fit too small for her now. Will her mouth continue to change from the effects of the IMRT or should she assume it is time to go get another impression and refitted for a new partial? She feel that by not having the partial in it inhibits her ability to eat. She is currently able to open her mouth at about 60% of the range that it was originally. Is there any type of exercise that can be done to increase this?
Thanks
Tami

Tami, John's surgeon told him not to even think about replacing the teeth that were extracted during surgery for at least a year. I wonder if replacing partials is the same.John is really frustrated because he wants to be able to chew again. I gues we'll just have to wait it out.

thanks!
Is that because the mouth is still changing from the healing?
Tami

The mouth is still changing and healing. This is not just a function of the frailness of the tissues, but there are actual differences in dimensions as the swelling goes down, even though this may not be visible to the naked eye. If you built a bridge for instance that had great esthetics now, it might actually leave a space under the pontics (false teeth portion) after the total healing has taken place. Placement of implants in the bone would be a function of seeing that the blood supply in the bone was adequate to allow osteointegration of the implants, and as a matter of routine they like to wait about 18 months before jumping into something like that. But with a partial, which is going to be a tooth born (where the forces of mastication are going to be loaded) appliance, with little soft tissue contact, there are fewer issues. If large areas of it rest on the soft tissues, then it will not fit well in short order as the tissues change under it, and parts of it will have to be relined with new acrylics to fit properly again. Personally given as sore as my mouth was the first year after treatments, I don't think I would have been able to tolerate anything resting on the soft tissues of my mouth.

Hello Guys
One question,
Did your health care insurers pay for the crowns etc? Our Dental ins only pays up to $1000.00 per yr.
We have Cap Blue Cross and even with letters from Radiation, Oncology and Dental docs explaining damage was caused by radiation they are refusing to pay.
Will we just have to bite the bullet?

Marica

Marica,
Well, I did not win the battle with my Cigna Insurance. The medical paid to have the 16 rear teeth pulled in the opertaing room, but whwne it came to paying for the bridges and caps I needed to be able to eat agin, they flatly refused, despite a zillion letters of medical necessity and said it was the dental insurance that covered it(max $1850 a year). This was a $15000 bill.

Others have managed to get the replacement dental work paid. I think it depends on the insurance company and how hard you fight. Good luck to you on this.

Take care,
Eileen

Marica, We have federal BC and BS and they almost pay nothing towards dental regardless of situation. I think we get a small portion of our 6 month check ups and cleanings paid. I am having 6 upper front teeth crowned come January, fortunately, my husband has a flex plan at work for dental, where he can request the money up front with the dental bill and repay in installments out of his pay check for the rest of the year. Good Luck!!! Love, Carol