My fiance was just diagnosed with SCC of the base of the tongue. It was found by an orange-size node in his neck. We are just getting started with this process and would appreciate any comments. He's had CTs of chest, neck, head. Positive for changes base of tongue, both sides and several nodes bilaterally. We are off to a comprehensive cancer center next Wed. Hope to find out more about this process. Would appreciate any info you would like to share on what to expect.

Request a PET Scan and I think there is a place on this sight that gives you a very helpful list of questions to ask you dr.s. I am sure someone here will be able to tell you how to get there. Remember we are here to help you both through this the best we can and prepare for a life changing journey. This can be done. Good Luck Lee

Welcome Sscfnp
I'm just starting treatment next week. I have a different type of tongue cancer, not BOT. I just read your profile and saw you were staged at T4N2cM1. There are many here with your type. You came to the right place for help and support. You are not alone. Many people will respond to you shortly. (It's late) Do you know the exact name of your CCC? There are several people from the Carolina's hear. Did they give any hint of a coarse of treatment? Did he use any tobacco products? I was a smoker. Some chew. And surprisingly, there are many non-smokers. It will be helpful if you go to "my profile", click on edit profile and scroll down to the signature box. Type in your stage and Dx. This way when people write to you they will have an understanding of what you are dealing with, thus giving you a more informed answer and you will not have to keep- repeating it. See mine and Lee's, at the bottom of our posts. Read the faq at the top of the page. This will help a little with this forum. We will help you with any questions you may have. Someone will have an answer for you. Fire Away! You will be in my prayers. Good Luck, Petey

Hello Sscfnp
I did a search and thought this may help you. Go to the "General Board" forum. Look for the topic "MD Anderson First Visit" posted by DWMorris on 4-27-07. It is about 2/3 down the page. This may give you a little insight as their DX was close to yours. Also remember all cases are unique to each person.Keep checking your post for other replies.

I'm still trying very hard to find everything on this site. I think I found out that I replied to the above questions on a private email??? I did go to the general board, but then I got lost, so I never got to "MD first visit" Will keep trying. I'm learning alot. I did talk to my bf tonight and shared what I learned. I'm trying to prepare him for his first visit to the CCC. Last week's visit to the general surgeon who removed the node, did not go well for him. It was a big shocker. I'm not sure that my telling him to prepare for more surgery, possibly chemo and radiation was the thing to do tonight. It really seemed to depress him and he's been being so positive. I just felt I need to prepare him a little for what he might hear on Wednesday. It's very hard knowing what he has to face, particularly when he doesn't.

Dear Sscfnp [could we have a nickname for you?]. Don't mean to sound strident here, but someone is going to have to know what he's going to face [sounds like you are trying-GOOD FOR YOU!- The thing you need to do now is to go with him to every Dr. appt. you can and take a notebook [or a tape recorder] and write down everything that you can. Your questions later will come from those notes. And, altho I am not an expert , I have been on this forum for over 2 yrs. and if you want me to call you and walk you through how to use the forum, just send me a private message or e-mail [see those little envelopes at the top of this post after the date of the post]Knowledge is a powerful thing and will help you both get through this. OCF will help you get through this. Amy in the Ozarks

When you log in and enter your password the first screen you come to is the "Home forum". Scroll down and you will see the forums listed
General Board
Introduce Yourself
Symptoms and Diagnosis
etc etc
Click on the General Board,when the page opens scroll down to MD Anderson first visit by DWMorris. Click on that (MD Anderson.....)
Read that information, it will be helpfull.

Hey Sscfnp

If you are having trouble with the private message to Amy call me ( Petey 561-667-3631 )and I will get your ph# to her. Call me now or anytime. I will be up all night tonight. Speaking with her is important and will get you the answers you need. I answer my phone 24/7 so do not worry what time it is. Petey

This message was sent in a PM to me from Sscfnp. It was meant to be posted here.

The CCC in NC is the Wake Forest University Medical Baptist Comprehensive Cancer Center in Winston Salem. The Dr is Jay Dale Brown. I couldn't find him on a recent web search of the center and I found this a little disturbing. I couldn't find him on the NC Medical Board site either. Maybe we have the name wrong. If anyone knows anything about him, let me know.

Sscfnp --

He is the chairman of the ENT department at Wake Forest. (It's J., not Jay -- that may be why you had difficulty finding him.) I have sent you a private message with his information, as the site administrators have requested that doctors not be discussed by name on the public boards.

-- Leslie