I had just found this site for the first time tonight. It's 3:00 a.m. and I can't sleep. I've dealt with having SCC on my tongue and mouth 11 different times since 1993. The first 3 surgeries the cancer was removed by cutting it out (several small areas). It kept returning once a year on the surface (found at monthly check ups) and was removed by laser and the last 4 times by kryo surgery (the last one in March 2009). Mouth was VERY sore the past few months and had PET scan last week. Cancer is in mouth, tumor in neck by L jaw bone and lymph nodes. Biopsy was taken few days ago and I go tomorrow morning (I guess this morning now) to find out what kind of cancer it is and what kind of surgery I will need. I am so terrified I can't sleep. I will continue to use this site for information and hopefully support.

Welcome to this site.

I am also new here and have found this site to be a wonderful source of knowledge, moral support and simple-but-helpful tips about my situation and about oral cancer in general.

I sympathize with your situation, especially that you've had so many surgeries. Be strong and do continue visiting this site. Members will defintily be able to help you.

Best of luck to you.

Jojo

BJ,

You have found the right place to help you through. Folks here are the real deal and helped me tremendously as I moved through treatment.

Good luck and let us know how things are progresing.

kelly

OMG - what you have been through! 11 surgeries?? I am assuming that this was an ENT or some such who was providing these services, and let me be the first to tell you that you definitely need to get to a Comprehensive Cancer Centre (aka "CCC") where doctors from all disciplines of Cancer - Medical Oncology (chemo - dr aka as your MO), Radio Therapy (radiation - dr aka your RO) and your surgeon work together to make sure that this thing doesn't come back again. It doesn't sound like you were offered those options in the past.

Welcome to the Board, sorry you have to be here, but we sure do know what the 3am postings look like - we've all been there.

Sending you a big hug - let us know how things go today.

Donna

First I need to apologize..I typed Blood instead of Bloop in a previous post on this thread. I didn't catch it so I'm sorry. I really did not mean to call anyone Blood. That said...Bloop, you sound like a very strong person. I love your attitude that you can handle the PEG. I agree...the mask sounds scary. I have not needed radiation so I can't give any insight, I wish I could. You have a lot of support here though and hopefully that helps.

BJ...welcome to OCF. 11 surgeries is terrible. My cancer was on my tongue also and I've had 4 partial glossectomies and man..they do hurt!! I'm so sorry to hear your cancer is back. You have come to the right place to support. There are some wonderful people here. You may want to start your own thread so all the comments will be focused on you. You may want to start one in the Introduce Yourself section. I look forward to getting to know you and supporting you through this hard time.

I had the mask made Tuesday and a CT scan. Then for some reason they called Wednesday and I had to go back and redo everything. I didn't see the doctor, just the technician, so I don't know if that was bad news or not. Anyways, the good news is I didn't have a panic attack with the mask. I hate the thought of having it on 35 more times but I think I can deal with it. Surprised myself even. I think I start radiation treatment next week. Thanks to everyone. Suzanne, no apology for Blood instead of Bloop. I knew it was just a typo. I've been a typist all my life. "Bloop" is for B as in Barbara and last name spelled backwards (Pool).

Barbara, I know how scary all this must seem to you. I thinl you are going to get started with treatment before I do. I am doing a practice run the 24th and then officially start treatments chemo and rad on the 30th. We can do this together. The port did not take 30 minutes to place, but did have an hour of recovery after that. The PEG is what has bothered me the post through this whole thing.

Oh I hope your peg feels better soon. I'm getting mine Friday and I know the weekend is gonna be another "recuperating" time. I'm sick of it. My gums still hurt. Actually I broke my shoulder three years ago and it still hurts. So I guess I have to consider myself lucky that my first 59 years were pain free, except for child birth. Now the rest of my life is gonna be not that great. You are too young to start this. But we'll do it.

You both will be fine. Remember even if it does get bad, it's usually only about 7 weeks (week 4 thru week 3 post Tx) and you have all of us here to make that journey as easy as possible.

Eat as much as you can now, especially your favorites, especially the really fattening ones. Even though you have the Peg keep swallowing every day during and post Tx.

Think of that little red train going up the hill, I think I can, I think I can, I know I can....

Bloop,

It's not bad news that they re-did the mask. They really need it to be perfect. Dana's radiologist had to re-do his calculations because Dana has plates and screws in his neck. You really want this to be right so it will work! Best of luck to you. When the treatment is over and you're not seeing these people every day, you'll actually miss them!

Diane