I just had surgery done in September, and will start IMRT Radiation Therepy in a week, and extremely scared of what to expect as far as side effects during and long term. I was told many different side effects that vary from person to person. My treatment will last for 7 weeks and they will do more on my tongue and less on my neck.

I was shocked when I heard I had Cancer of the tongue since I don't smoke, nor drink, nor exposed to any checmical. Makes you wonder how anyone gets Cancer of this type if they don't fit the profile of the causes of Oral Cancer. In May of 07 I had what was believed to be a Canker sore, and never went away. They cut the tumor section and around the tumor area of the side of my tongue. They found some Cancer cells around the tumor. I am worried that my Cancer will spread or come back after Radiation, since nothing is 100% guaranteed.

If anyone has went through this type of Cancer, or going through it, and will get Radiation, or did get it, I would like to hear from you and your experiences. Unfortunately the Cancer Center I go to does not offer an Oral Cancer Support Group.

Hi Whitenoiseb4

Welcome to a club that we would wish on no one. I am about a year ahead of you. I had my surgery September of last year (2006) with IMRT following, finishing just before Christmas. I also had induction Chemotherapy before surgery. I did well through the chemo and surgery, but the radiation for me was a much different story. I will be more than happy to share any of my experiences or answer any of your question, as will most anybody here. You've found a great group of caring helpful people!

Kevin

Whitenoiseb4
You might want to be checked for HPV virus, this is also a cause. Sounds like you caught it early.
Some questions I would ask are What about my teeth, have a dentist check them out before, the radiation will cause damage to them. I just had all my teeth removed this year, had 5 removed before surgery, but to much radiation damage had 26 taken out 4 months ago. I also went thru 45 hyberbaric oxgen chamber treaments this year before they removed teeth. Ask about syliva glands do they think they can save any. They did save one of mine and that make a large difference. Ask about food tube incase you have trouble eating during your radiation, I choose not to, bad choice on my part. I also just had another good check up. So with the Lords help I will and so will you kick it butt.

Hi Whitenoiseb4,

Like you, I had part of my tongue removed 2 1/2 years ago and had no risk factors either. Mine was also a non-healing sore on the lateral border of my tongue. However, I did not have radiation or chemo. So far the studies have shown, tumors on the mobile tongue have not been found to be HPV+.

Keep checking back here and you will be able to get answers to most of your questions. As you can see already, there are many knowledgable people here that have traveled the road you are going to begin and they are a group of wonderful, caring and sharing people.

Good luck.

Jerry

http://www.oralcancerfoundation.org/HPV/index.htm

I have read on one of the cancer sites that even oral sex can cause this crazy cancer..I guess no one knows for sure what does cause it, but I;m in a study to find out if it can be stopped from reurning so frequently. Good Luck

Where are the Medical studeies to suppot that HPV causes Oral Cancer? I have been reading Medical Journals and a Cancer book written by Medical Doctors who share their own battle with Cancer and no where did I see anything linking to HPV and Oral Cancer.

Thank You for replying to my post. I need all the helpful advice I can get.

As far as teeth go, I went to the dentist and did what I had to do there and got an RX for toothpaste, Prevedent, that is supposed to help. I been rinsing with Tee Tree Oil Mouthwash as well and it helps my tongue. I am also starting a full regimne of Vit C liquid and hoping all this will help me.

I would like to hear your experiences with IMRT Kevin. I am unsure what to expect at this point. I am extremely worried.Thanks for sharing

Whitenoise,

I would encourage you to spend a lot of time on this board reading posts one after the other. You will gain a tremendous amount of information from just doing that...will save you from having to ask some of the many questions that are coursing thru your mind right now. You can even do a search for specific subjects. The best part is you will get the big picture of what this treatment entails start to finish and then in the future.

Don't get me wrong, we are more than happy to jump in and be of help, but some things like "experiences with IMRT" are discussed frequently here. In fact, get used to reading the signature lines from each poster...gives you a lot of info on what diagnosis and treatment this particular person has experienced. It varies greatly from one person.

Just thought I would enlighten you on gleaning info from this site - best of luck with your treatment. Deb