Rebel, I am praying that you don't have to go thru that much. Just keep a good positive outlook. Smile a lot too as it makes people wonder just what the hell you are up to. LOL

HI Rebel
I am from the Chicago area and I did have my treatment up at UW Madison. This was after two other opinions in Chicago. This is a top notch CCC. Can I ask if the ent/surgeon you meeting with is Greg Hartig?
If it is, you cant go wrong. This guy is amazing, in my opinion.
I had to have quite alot of work done with my cancer but today I am almost 5 yrs out and I really owe it to Dr Hartig and my MO & RO
up in Madison.
I agree with Jim, try to stay positive. Good Luck to you

Im sure if your surgeon is at the same address as the cancer center that he is affiliated with them. You need to go to a seperate cancer center and get a whole team to check you out and then get the recommendation. This could make a huge difference in how you are treated. Please do not settle when it is such a drastic surgery your first doc suggested. Is the center you are going to on the list I gave you? The lists are the best hospitals and cancer centers in the country.

Rebel, I wanted to clarify something I agree you have to get several opinions. You dont ever settle for drastic surgery unless its clear in your mind this is what is best for you.
This is what was best for ME. UW Madison is rated as one of the best Hospitals & CCC in the country.
If you do decide that surgery is your route, I was just recommending UW Madison. Hang in there

the center i am going to is on the list.uw paul p carbone ccc. the doctor i was reffered to was greg hartig. i did some research on the center and the doctor. when surgery was first mentioned i refused. the mo and ro decided that some chemo followed by radiation and more chemo was an option. maybe not the best one though. after some consideration i agreed to make the trip to madison to see the dr. and hear what he has to say.
im not making any decisions until i have everything laid out in front of me.
my new motto is: "yesterday was the easiest one" borrowed from army air assault school.
it aint over til i say it is.
thanks guys. i will update as often as i can. in the meantime i have a lot of reading ahead of me.

Hey Rebel-

Not sure where you are with everything. Are you going to have the surgery. I had a total glossectomy at 33 (I am 37 now) and I can eat pretty well and speak decently. It was a long journey to where I am now. I hope that some of my successes are your successes too. Please let me know if you have any questions. So sorry you are dealing with this!

University of Chicago has some sort of clinical trial with a different type of radiation that has worked for some. Grant Atchaz - a famous chef- was treated successfully-but he is the one and only person I've ever heard of who has survived tongue cancer (at the front of the tongue) with chemo and radiation. Usually it doesn't respond well to those modalities which is why it isn't reccomended. Also- if chemo and radiation don't work - surgery can be very challenging - the skin is delicate- the blood vessels weaker- you don't heal as well.

So lots to consider.

Anyways! Know I am late chiming in but I thought I would.

KATE

I am not a Dr. just relaying the info

thanks for the reply kate. in the beginning i refused to consider surgery. im still not happy about it. the ent mo and ro did not really pressure me into it but after some hard thinking i decided to see the sugeon and hear what he had to say.
also did some study on recurrence with rad and chemo alone. odds of a cure were not in my favor. what it came down to was why waste time with rad and chemo when surgery would likely have to be done in the future anyway.
i want it out and i want it out now. this has gone on too long (over a year since i thought something wasnt right).
get it done and over and go from there.

You can do it!

hey there rebel! I am hoping it's not too bad for you. But sometimes, surgery just isn't enough, depending on stage and if lymph nodes are involved, or how deep it goes, they may suggest chemo and rad on top of surgery, but they like doing surgery first, cuz it gets tougher after rad or chemo.

If they decide you just need surgery though, i would advise that above going the rad/chemo route, unless they suggest all!

After my surgery, i recovered much quicker, with few side effects than i have since radiation. I still have lasting side effects from radiation, and i know it's from radiation and not from surgery, because after surgery but before radiation...i didn't have these problems.

I am now a year out of surgery, july will be my year for radiation, and i can eat/talk/drink just fine. Everyone gets different results though! I had a heck of a time with radiation, but some just sail right through!

Keep up the good fight and let us know when you know stage and what not!

I am just in MN so kinda a neighbor to you! So keep up the good fight! You should be happy I didn't say anything about the cheesehead, lol! Take care!

Rebel, what were you earlist signs or symptoms, were you late in getting seen? What stage are you when they have to remove the tongue, I have a red lesions almost a year old now and am just getting it looked at by apecialist, who should I see first?