The good news is that my husband has made it through radiation, chemo and a left neck dissection. His last radiation treatment was 10/31/03. He is now on the once a month checkup program for the next year. However, in preparation for his treatment he had to have all his teeth pulled (still the single worst event of the whole program). Yesterday he saw the oral surgeon who told him that he could have a full upper plate, but he could never have lower dentures because of a fewer raised areas that would be irritated by the dentures. These irritations would get infected to the point of gangrene and he would loose his jaw. Basically he dismissed Rob as a standard VA cancer patient and did not care to go out of his way to help him enhance his quality of life. We know that new teeth will not be easy, but he wants to eat real food so badly. He has a PEG tube which has enabled him to remain nutrionally sound through his treatment and months since. He eats what he can now as his sense of taste has returned and his swallowing is greatly improved.

We have been discussing the matter of teeth for months and the possibility of paying to have his teeth built here in Bend instead at the VA hospital which is 4 hours away and only has an oral surgeon once a month. Now for sure we will have a second opinion.

Has anyone been told this before? Should we accept the oral surgeon's decision? Rob is not afraid of adjusting to dentures and he definitely wants to look better and eat some regular food.

Please help!

Cindy

Hi Cindy,

We have had lots of talk about the importance of teeth, If it were me I would fly around the world to get teeth! (Fortunately I still have all mine.) Definately get additional opinions. There are others here that either have had similar work done or are getting ready to have it done.

For any one else recently diagnosed, PLEASE PLEASE do not let them take your teeth unless it is absolutely necessary. The old standard for preparation for radiation was to have your teeth removed. That thinking fortunately has been replaced by the view of removal only if they are in bad shape to begin with. I am afraid that some Medical profesionals are still thinking the "old" way!

Definitely get as many opinions as necessary. I was told by the same idiot that had all rear teeth pulled that I could never wear dentures. Fortunately, he also sent me to another prostodontist that specializes in cancer patients who not only made me partials, but also informed me, when he saw my xrays, that there was no reason that the teeth should have been removed in the first place.

It may be too early for your husband to have dentures made. I didn't get my partials until and year and a half after radiation. They also took 6 months to make and $15000 not covered by insurance. I did have one large bump on my lower jaw bone that other dentists gave as the reason they wouldn't mkae me dentures. My prostodontist didn't find it a problem and by the time the final partials were ready, it had
disappeared.

The dentist you saw sounds like an idiot. How is your husband supposed to chew with only an upper denture? Chew on the gums? Or does he take it out whne he eats? When I asked for just am upper partial so my face would stop caving in, they refused because I might bite myself. Get another opinion from a competent prostodontist. Good luck.


Eileen

Hi, I have been told much the same thing. I have a bar replaceing my jaw bone. It is not final, but maybe no bottom teeth. Top for cosmetic purposes. I am 20 pounds over weight since They removed my Peg and said eat! You can eat anything even steak if you work at it.Use what you have.If I had a bone they said maybe implants , but that has been water under the bridge years ago.My jaw has ups and downs from where real bone is and where bar is. I can see where it would be difficult to put a denture in.The fear of irritation is a real one. Mine would be having infection on bar. I am on my second one and this area has taken a lot of surgery.I would love to have a full set of teeth, but I also do not want to go backward in my treatment.Now, no fat jokes I am working on this! I only told this so you could see that a person with no jaw and no teeth can use tongue and roof of mouth and side of jaw to eat normal. Lettuce is my only problem. Good Luck

I was at my prosthodontist yesterday and asked him how you go about finding someone like him in your area for a second opinion. He said to look for a maxillofacial prosthodontist, preferably one who is also a dental oncologist. He suggested contacting the Fred Hutchinson Cancer Center which is in Seatle to see if they could refer you to someone. He also suggested trying major cancer centers in California. If all that fails and you want more info on my guy, let me know, but we are in NJ.

Good luck and take care.

Eileen

Sundance/Cindy, if you are checking the forum, I can refer you to some good dentists who work with cancer patients in Portland. Contact me if you want this info. Awaiting lower implants, I have had just an upper denture for appearance. It is truly amazing what one can eat with no teeth -- as gnelson says, just about anything. Fingers crossed, I will have bottom implant teeth by the end of the month, but I have not curtailed my social life and eat out often with just the upper denture. For those of us who had no choice about losing teeth, this is a great improvement. I was made to wait a minimum of six months post rad before anyone would even talk to me about putting anything in my mouth. Do not settle for less than functional!