Hi all. I am Ed and have never participated in a forum before. I was diagnosed with Tongue cancer back in May and had 3/8 of my tongue removed and 22 lymph nodes on June 2nd. The tongue part was all clear but they found one small spot in one node, making it T2N1M0. The doctor reassured me that everything was clear and that now it was just a watching game. The middle of September he called and said that, just for "just make sure" we should do radiation on the neck. The radiation doctor said that this type of cancer had too low of a recurrance rate to be radiated and that his machine would do more damage than he could guarantee to do good. Oct 12th I felt a lump in my neck and being as I was already scheduled for a catscan, I haven't said anything to my doctor. I am to see him this Friday the 14th. Naturally I am scared witless.

I guess I am just reaching out to those (like me) around me.

Hi Ed-

Hmm. What hospital are you at? The lump could be nothing but its best to have it checked out to know for sure. I know its frightening but you need to let your Drs. know of anything unusual. I don't kow what the actual statistics are of reoccurance of tongue cancer. That's confusing that the two Drs. gave you different information.

Anyways-- we are here for you. I know this is a little spooky but its proabably just a little bump or something. Keep a close eye on it and let your Drs. know right away OK?
K

Wecome aboard Ed. I had a reoccurence about 2 months after surgery. If I would have had chemo and Rads then, I would still have my teeth and the memory of half a year still with me. Teeth had to go so that I could get tongue rad seed implants . Hasd to have the rads and chemo right after they took my teeth and then implants. But I am alive and still kicking. Good luck and I hope the lump is zilch.

Welcome to the board Ed.

I was told the odds of recurrance are about 35%, which they considered high. I ended up in the 35% category and after the 2nd time I didn't ask any more questions about odds.

I remain vigilent (maybe too much?) about lumps, bumps, creaks and pains but at least I am still here to talk about it! Stay on top of this with your doctors - far better to be proactive then to have regrets later.

Let us know how your appointment/scan goes. In the meantime, we are here and know the fear you are talking about. Cancer not only steals days from the end of your life, but it is a thief that takes away the days we spend waiting and worrying as well. Try not to let it steal today. It doesn't deserve it!!

Donna

I understand how scary things can get when you have a recurrance. You are your best advocate. Any time you think something is out of the ordinary, run to your doctor and get it checked out.If you don't like the answers you are getting, get a second opinion.

Right now you are expending a lot of energy worrying if this lump is going to harm you. I think getting the information as soon as possible is best so that you don't worry needlessly.

Having said that, this group provides a lot of emotional support and tools to help you deal with things. Anytime you need help, want to vent, or want to share happy thoughts this group is there for you.

Hopefully, everything will turn out good and you will report how relieved you feel.

Ed, if you are not being treated at a Comprehensive Cancer Center, it would be a good idea to submit your particulars to one. The reason for that is the CCC will have a tumor board where the surgeon, MO, RO and others will all look at your case at the same time and agree on what's best.

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Hi Ed:

Welcome to OCF. You will find lots of support from the members here who have all been in your shoes before. Waiting to see a doc or for test results can be very frustrating. Try your best to stay calm and not to worry. Dont waste your time with that. I know its easier said than done, but Ive been right where you are now. My results were not what I wanted to hear, but I got thru it and now Im proud to say I beat it twice

Take a few minutes and write down all your concerns and questions to ask your doc tomorrow. If you can take someone with you thats always a good idea too. Sometimes we hear only so much before we kinda shut down and stop listening.

I wish you the best of luck tomorrow. Hope you are in the clear.

Ed,

If I were you I would get a FNA (Fine Needle Aspiration) on that lump ASAP or at least get to a ENT and see what they recommend.

Are you saying they did all that surgery without knowing it was SCC going in?

Hi Ed,
Welcome to the forum but puleeeeeze next time you find a lump, don't wait a month and 2 days to get it checked out just because you already have an appointment. I'm cetain if you had called the doctor back in October, he would have seen you almost immediately and saved you a month of worry and lost treatment time if it is metatsis. As David said, it should be biopsied either surgically or FNA. Good luck tomorrow.

Take care,
Eileen

I got to see my doctor about the lump on my neck and even though he pocked, prodded, and twisted it. He couldn't find that it was anything more than a lumpy muscle. He even went and personally got the cat scan and reread it. It made him late for his next appointment, but he could find nothing. He qas almost as worried about it as I was, but he said it was nothing. He come back in two months.

Thank you all for your support. I am almost ashamed to report nothing wrong.