I appreciate knowing what everyone else has done, but of course we are all different. I have decided to go ahead with the surgery and if radiation is necessary, I'll cross that bridge then. I think I could go to 5 different dr's and get 5 different opinions on which way they would go. Sometimes you have to follow your gut instinct. I don't know that you ever feel totally right in decisions like this, but I don't feel I can sit and wait too long.

Actually, you really shouldn't get five different opinions about which way to go--there are protocols for treating this cancer. They are linked somewhere here, I'll try to find where.

Like you, I had tongue cancer and had surgery and neck dissection. I had about 1/3 of my tongue removed. My nodes were all negative, but the tumor itself had some risk factors for recurrence so the opinion I got from docs at a leading CCC was that I needed radiation and should probably have chemo as well (although that was aggressive treatment for stage II cancer, I don't regret having it).

The surgery wasn't nearly as bad as I feared. I was back to speaking normally and eating pretty normally within a month. After you have your surgery, if you are not being treated at a CCC, you may want to get a second opinion from one about whether you need radiation as a follow-up.

Nelie

Guidelines for treatment:

http://www.oralcancerfoundation.org/treatment/guidelines.htm

Bigtwin
You will be OK, its a rollercoaster of emotions,
There are many of us that have been there. Second opions are sought after, to see if all are on the same page, have faith in your Doctors.
I will be thinking of you.

One of the BIGGEST myths I read about on this board is that we have to have our teeth removed to have radiation. That is simply NOT true and so many people are left without teeth because of this. There are TONS of survivors on here that didn't have any teeth affected. Please, please be sure to have all the information before having teeth removed. Once taken out, they can never be replaced.
Take care,
Minnie

I second what Minnie is saying. Do NOT have any healthy teeth pulled without a second opinion. They USED to do this as a routine precaution, but it is no longer done. I, like an idiot, let them pull 16 healthy teeth and have been sorry ever since. Took over two years and $15000 1997 dollars to get partial dentures and is not covered by insurance, medical or dental.

Take care,
Eileen

I recently went through Chemorad Tx and all my dentist did pre TX was redo some fillings, take X rays to make sure everything was OK and make molds for the daily flouride Tx which I started pre Tx and still do. I missed a few days during Tx. I have seen the dentist once post Tx and I see him tomorrow. He told me last time to make sure I keep plenty of water in my mouth until my saliva (?) returns.

Bigtwin,

I have to agree strongly with Minnie and Eileen -- don't agree to have teeth pulled unless your doctors can explain a compelling reason why (such as the teeth have problems already and would have to come out anyway). I just came from a regular followup visit with my periodontist and he said everything still looks good -- 17 years after radiation and with all my original teeth still intact. It does require a lot of attention to oral care (regular brushing, flossing, fluoride applications, keeping your mouth moist), but it beats having a lot of unnecessary extractions.

Cathy

If your teeth are in good shape, you can probably get by with having good dental work done prior to treatment and getting the dentist to prescribe prescription strength floruide toothpaste and rinse,; however good detnal care is essential for now on due to reduced saliva if you have rads. DH kept his teeth, as have several people I have known. One guy had problems with 'scatter burns' on his tongue caused by the rads bouncing off old amlagum fillings. They made him a mouthpiece that was supposed to prevent this, but it didn't work. This aparticular friend, who also had no risk factors for cancer, was told by his doc that his CA was caused by HPV. They can usually tell by the lesions if it is HPV.

Also, another friend of mine had a large portion of her tongue removed had portions of a muscle from her upper arm used to reconstruct her tongue. Even though there are certain protocols to treatments, there are also varying ways to treat a lot of these cancers. My own huband had a treatment called RADPLAT that is only available in ten centers in the US. The goal of RADPLAT is organ preservation while defeating the cancer. Here is an article about it:

http://theoncologist.alphamedpress.org/cgi/content/full/11/5/469

One of the doctors who created this treatment is in Springfiled, Illinois. If you can get over there prior to your treatment and want a second opinion about having RADPLAT instead of the standard treatment send me a private email at [email protected] and I can give you the contact info.

I saw my dentist this am and his practice has many patients in our boat. He says that there is no medical reason to pull healthy teeth prior to rad. All of us must brush and floss frequently; use the flouride daily and swirl water constantly throughout the day until our saliva production returns (if ever). Those that typically experience root decay problems are those that don't practice good home teeth care and are prone to decay issues naturally.