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#56847 09-02-2005 07:13 AM
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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

#56848 09-02-2005 07:25 AM
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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


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#56849 09-02-2005 08:30 AM
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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

#56850 09-02-2005 09:16 AM
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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

#56851 09-02-2005 12:03 PM
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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


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#56852 09-03-2005 04:07 AM
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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

#56853 09-03-2005 11:27 AM
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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.

#56854 09-03-2005 02:29 PM
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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


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#56855 09-03-2005 02:51 PM
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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.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#56856 09-05-2005 01:11 PM
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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


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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