Hi Sue, I'm glad they found the primary site.

I have to agree with Eileen on the subject of teeth. I still have all the teeth I had before my radiation. (and I got plenty of it) Ask them for more info as to why they want them removed.

Eating without salivia is bad enough!

Dear Eileen,Mark and Everyone, I'm afraid the top teeth are gonna be history,have had a long battle with peridontal disease-teeth are ok but the gums gotta go,lol.I could probably kept them if I had more time and money but my insurance only pays for 1500 dollars worth of work a year,and I don't know when I'll be back to work.My radioligist told me (I was not real willing to part with them) that he would continue treatment whether I had them pulled or not.I'm depressed about it but am working on acceptance-minor loss it this game. On the up side the rad dr.and the chemo dr. are expressing lots of confidence that this base of tongue tumor will shrink and go away with no futher surgery.Yipeee!So on to chemo and radiation.Thank you for writing a reply. Keeping Hope,Sue

Let's try this again. First removal of the teeth should be covered by medical insurance and can be done in the hospital but you will have to get prior approval. Second if you are worried about the dental expense, how are you planning to pay for the dentures? These most likely will not be not be covered by medical and generally only covered up to 50% of reasonable and customary expense.

I had periodontal disease and fillings in my rear molars. I had not had any root canals and had very long roots on my teeth. My periodontist who I unfortunately did not consult for lack of time felt that what they did was unnecessary as did the prosthodontist who eventually made me teeth. I had my remaining teeth scaled by the periodontist every two weeks during radiation and every two months thereafter. While I have had some cavities in the front teeth, that started after I started wearing the dentures.

As Mark points out, eating is bad enough with little saliva. Being unable to chew anything is really going to make it difficult.

Eileen

They wanted to pull all of my teeth also. I went to my own dentist and got a second opinion and decided not to pull any. I have been quite meticulous about cleaning and flouride treatments, etc. The main risk in keeping them is ORN (OsteoRadioNecrosis - literally bone-radiation-death) and there is no guarantee that, even with pulling them, you won't get ORN. ORN occurs less than 10% of the time. It is a lifetime risk I am told. I had everything x-rayed, cleaned and repaired before I started treatment and like Mark, they irradiated both sides. They have to scare the crap out of you because of disclosure rules and liability issues.
If they can keep the exposure below 6200Gy, ORN becomes even more remote of a possibility.

Sue, I don't want this to sound insensitive but I would sell the family car (or house) to keep my teeth. You know better than we do about your own teeth, but just be sure before you get rid of them. I won't say any more about it.

Hi Sue,

Sorry I didn't answer your question about what type of surgery to expect, but it sounds like you may not be needing surgery anyway. I sure hope the chemo and RAD works. There are several people on the board that have had the chemo/RAD and it has worked great with no surgery needed except sometimes a neck dissection. I wonder sometimes if Heather would have been better off with chemo and RAD instead of surgery, but that's something we will never know. Unfortunately, there doesn't seem to be any way to know the best course of treatment ahead of time.

As far as the issue about your teeth, I can't help you there. Heather had strong teeth with no problems and it wasn't even suggested that she have any pulled. The surgeon did remove 2 when he did the glossectomy and mandibulotomy, but that was so he could obtain clean margins. It sounds like you are getting good advice from Eileen, Mark and the others.

Stay strong, be positive and always ask questions until you understand and are comfortable with everything the doctors recommend. You have to be your own advocate and keep on top of things. Even the best doctors in the world don't know your body like you do. If something doesn't seem right, question it until you're satisfied with the answer. Good luck and keep us updated on your progress.

Rainbows & hugs,
Rosie