Gain as much weight as possible now, you won't have a problem losing it through treatment, I promise! Keep that good, go for it attitude, you'll only have that to draw from at times through radiation. Do find out about chemo at the same time. The "medical papers have shown a little better results long term with both, concurrently. Because of my young age & good health at time of dx, tumor board said hit me hard & with everything available for the highest possibilties. I have 3 children & wonderful wife: a lot to live for & so do you! You can do this! Keep yer chin up! I am cancer free today & healthy as a horse! My life has changed in many ways, but mostly for the positive. Erik

Hello Laura, Sorry to have you among us. There are so many tough decisions to make prior to tx. There is more than one 'camp' about tx regimes. I chose to follow a very aggressive plan of chemo and radiation and NO surgery. My primary tumor was in the base of my tongue, and too large to remove without sacrificing most of my tongue. I had mets to left neck and scored a T4 before we began. University of Chicago was having good results with advanced head/neck cancers without surgery. Very aggressive chemo and concurrent radiation. My tx plan called for (seemingly)gallons of Taxol + 2 other drugs daily for 10wks. I got a week off, then went in for daily chemo and 2xdaily radiation one early, one late. This scheme for 1 week, then no tx for a week, then same again - in total 12 weeks of tx 6 on and 6 off. All that finished 11/03 and I am doing very well. But post tx damage remains.

I have very little swallow ability, though my speech is fine. Some dry mouth. I am consigned to live by a peg tube. Its kind of a boring way to eat, but I don't have to watch my figure!! When the rad burns healed I had marvelous new skin on the outside of face and throat, but lots of scar tissue and surface irregularity inside.

Gain weight now and hang onto it. Figure out a way to get twice your normal water intake into your system. I even did IV fluids at home during tx. Use the mouth wash from your rad onc. And often. Keep some narcotics that will go through your peg handy for the bad days. I think over coming the trials of tx is all about character - specifically angry character. I converted my fear and pain into additional determination. Besides, when my hair did grow back, the gray was gone! I can dominate conversations at the dinner table because I can't eat! Silver linings.... You can do this. My thoughts and prayers are with you. Tom J

Laura,

We faced a similar situation with SCC of oral tongue and T2N1M0. The tumor board consisting of 4 doctors at the hospital were the surgery was done left the choice to do radiation up to us. There was extracapsular spread on the positive node but only focally.

Subsequently we got second opinions from a cancer treatment center. The ENT and radiation oncologist recommended doing radiation (35 treatments, 70 rads) and the medical oncologist recommended doing 6 rounds of chemo with cisplatin. We decided on doing both the rads and chemo.

The radiation side effects have been hell and my family member has still not fully recovered. The treatment ended in mid July 2005.

We opted for both the radiation and chemo

Laura,

I too was relatively young when my ordeal started.I chose the rad route (IMRT).
Please read my signature below, it tells all.

Johns Hopkins is right up there with the best. Great choice. That really means a lot. Knowing that you made the decision to go to the best is something that you can feel confident about going forward and looking back.

My mindset at the time was like this.

I wanted to get rid of this rather than dance around it and wonder if I made the right decision. I felt that the best chance I had as a younger patient was to take the full course of treatment. So far I am proud to say that it worked for me.

I was just at the University Of Chicago today and met with my ENT. Nothing there. We are now going on a 6 month schedule. So the next time I go is the end of May. Wow, it really goes fast.

The only side effects from the rad is I get some pretty serious spasms in my neck. And I have a dry mouth during the day when I am most active. Other than that nothing. You have to make your choice and I wish you luck and am here to support you. I just thought I would chime in since I was relitivly young at diagnosis.

Good things, Peace, Love, and god bless
Robert, Christine, Alison, Robby, Tommy, Billy, And Scotty Hamilton

Laura,

I also live in southern Pa. I was diagnosed with tongue cancer in September of last year. I had the whole nine-yards. Surgery, and Chemo and radiation at the same time. I will be honest, the radiation was the absolute worst part for me. My physicians and my family and I decided to go the most agressive treatment route. I decided on it because of my age (40). If I had to do it over again, I would still go through with it. I think the benefits of radiation far outweigh the discomfort that I endured. The people at the treatment center and my family were with me every step of the way. I had a mask that I had to wear for my treatments. It has markings on it of where the radiation was directed on my face and neck. On the day of my last treatment, I PROUDLY walked out with my mask. I have it mounted on a wall in my office at work. I think of it as a big badge of honor. Good luck to you and best wishes for a full recovery.