a friend emailed this link im glad he did.
ive never posted to a forum of any kind have some patience please.
after an exam and biopsy i was diagnosed with tongue cancer 15Feb11. i dont know what stage.
ive seen the oncologist and radiation guy and have had a feeding tube put in. i have decided to consult with a sugeon 3Mar11. and go from there. i have so many questions and concerns i dont know where to start

Rebel6211:

Sounds like you are about 2 months behind me in this journey. I had surgery to replace 1/2 my tongue on January 3rd 2011 and am doing pretty good all things considered. I have a gastro (PEG) tube and would not give it up even though I am eating soft foods, pudding, ice cream, etc. and can now drink and swallow most liquids. Let us know how your appt with the surgeon went (today ?).

This site is wonderful and full of much good info and invaluable support from some very brave people who have been thru this and much more and have blazed a trail for the rest of us to follow.

stay in touch. Where are u in wisconsin ? I am pretty close to Wisc/ILL border.... maybe an hour away.

Also -- NO QUESTION IS TOO SILLY TO ASK. these people are great and if one person doesn't know the answer, someone else will get back to you or tell you where you can go to get more info.


Ingrid K
from Illinois
(Facebook name: Ingrid Kardynalski in Huntley, IL

Rebel - welcome, sorry you have to be here but here is a great place if you need it. Which we all do!

Let us know what the surgeon said, and begin making a list of those questions.

Courage!
David2

Hi rebel - sorry you have to be here... But there are a lot of wonderful people here who can help. Read some of the postings - they will give you information about what to expect, with regards to surgery and recovery and any possible treatments that may be in your future. Inform yourself, write down any questions you have when you go see the surgeon. I know it's terrifying - but educating yourself will help. There are a lot of great people here who will answer your questions, and lend an ear.
I too was diagnosed with tongue cancer on the 20 th of December. I am 4 weeks out of surgery where they removed 1/2 of my tongue and 40 lymph nodes. The next step for me is radiation and chemo in 2 weeks. It's not an easy road, but there are people who've been through it before And they can help. Take care and good thoughts coming your way.

Hi Rebel. Welcome! Glad you found us. My sister had same cancer and is 8 months out of surgery and 4 months out of radiation.
Please make sure you are being seen at a CCC. I'm sure Christine will be along here soon to post the link to them or just search it on our site.
There you are usually treated by a team which includes a surgeon, oncologist, speech therapist, nutritionist etc.
It's going to be a rough road that many here have traveled so ask away. No question is dumb or weird to us.

Welcome to OCF, Rebel. You have found the best place to help you with your journey. Are you being treated at a cancer center? That is something very important. Its much better to be going to have this dealt with by the top places where they are very familiar with oral cancer. All the specialists involved with your case will conference together to discuss your individual situation and come up with the best treatment plan for you.

Right now its important that you eat all your favorites and then have seconds. Fill up now as yoru sense of taste will be compromised for a while. Dont worry, its temporary for most of us.

A few good questions to ask your doc are....

How many cases do you treat per year?
How extensive will surgery be? (Surgeons cut, remember that!)
What are all the treatment options available to me?
What side effects will I experience?

Those are just a few starters. A very good place to start on here is the first tab titled "New Posters Read This First". Then there is another tab with a great document titled Draft Copy. This is a huge list of all kinds of pointers and posts from experienced patients and their caregivers, the link for it is below.

Best of luck with everything!

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=106434#Post106434

thanks everybody. the info ive found on the net is spotty and outdated at best. support and answers from people who have or are experiencing the same thing is a huge help.
i see the surgeon next week mar 9 my ent told me they would probably have to cut out my whole tongue. i live between green bay and marinette wi. the surgeon is at UW madison hospital. the ent knows him personally and says hes one of the best in the country.
i suspect ive had this for over a year. yeah i know i waited too long.
my sense of taste has all but disappeared already. the pain is what finally got me into the doctor.
the last of my teeth were pulled 16 feb.
my biggest concerns are will i ever be able to eat and talk at least so people can understand me? my ability to speak coherently gets worse every day.
though im not a first time cancer patient-i had testicular cancer back in 90-91 which involved surgery and radiation this is much worse.

Rebel, Im so sorry to read of such a drastic surgery. Do yourself a huge favor and go to a cancer center for a second opinion. Do not hesitate. Call right away and tell them everything and that you need to be seen immediately. It could mean a completely different treatment plan which could potentially save some of your tongue. Here is a list of cancer centers and best hospitals. Good luck!!!!

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Do as Christine says Rebel. She has been thru just about everything. She also gives very good advice. Her and I are in this together it seems. We have both had a lot of things done, but I did have at least 4 opinions before I had the 1st surgery. Right now I have 2 big ones to go before long. Christine booted my rear to get me moving. LOL

thanks for the list christine. the surgeon i will be seeing is at the same address as the cancer center in that city. i will be sure to ask if he is affiliated with them.
my info came from the etn. the surgeon may not think total removal is necessary. ill hear him out and go from there.
damn jim thats a lot to go through. im tired of it all already and i havent even started yet

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?

aprils...i would start either with a dentist, or ent if you can. But i started with a dentist and she referred me to a oral surgeon that tried different things. And it isn't the stage that really determines if they have to remove a piece of your tongue, it's a bunch of different things. So maybe start with ur dentist and go from there.

i first noticed irritation a small lump fall 09. i was laid off several months with no insurance.
went back to work in jan 10. pain got worse but i ignored it it.
went in feb 13 2011. by that time my tongue hurt bad and had very little movement. also speech problems. had i went in a year earlier things would have been much better.