Gary: I'm just curious....On what basis did your H&N surgeon base this statement on?
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Just for the record it was my head & neck surgeon who recommended against having surgery, that my mortality rate would actually be improved with RT/ct only.
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Thanks! Lois

Surgery can have enormous impact on QOL. If radiation and chemo can knock it down, that means you get to keep your tongue, swallow, talk, and so much more.

Surgery for the very small and early or for salvage of the really bad is the most common approach. If rad and chemo don't do the trick, surgery is now less aggressive, since the tumor is smaller from the previous treatments. Cutting away less of those needed structures that you can't (for the most part) put back.

Big,

Sounds like a CCC is your best option. Just to share my sisters choices and outcome. She discovered her OC on the tongue very early. She was a dental hygienist. Had surgery to remove less than 25 % of her tongue. The cancer returned to glands and nodes in neck, had modified neck surgery, declined the radiation that was recommended. Was a very young 48 yr old with healthy habits, veggan, etc. Always came back strong from the surgeries. It came back again and she had a radical, still declined the radiation. Cancer returned to her carotid artery and surgery was no longer an option. She underwent radiation and chemo, but passed away 5 months later. I don't know if her outcome would have been different if she had undergone the radiation after the 2nd surgery, but just shows you how aggressive this cancer is. She worried about the after effects of the radiation and quality of life issues...she has no life now. I miss her everyday and wish she was here. This took place in a 2 1/2 year span.

You are in my thoughts and I hope you find the treatment, just remember the aggressiveness of OC.

Nancy

Hi Thomas here. I had radiation in Dec. 05 / Jan. 06. For me it was the right thing to do. In Feb. 05 I had day surgery to have a small tumor removed (T1N0M0) from the right side of my tongue. No radiation then.
Over the summer of 05 it grew back. I had an other bi-opsy in Sep. 05 witch came back positive. I had the big surgery in Oct. 05 (see my write up in "Introduce Yourself" happytobealive) I ask my doctor
if I would have gone for radiation after my small surgery in Feb. 05. Would that have prevented the big one in Oct. 05 (T2N0M0). My doctor said YES for sure. Without the radiation I had between 0 and 40% change
for this thing to come back, and with the radiation between 0 and 5% change.You do the math. This is a no brainer! Some people get off easy, and I was one off them. Yes I had the burns. Yes I lost
50% of my saliva, and yes I lost part of my taste (witch has come back). So it is not the end. I wish everyone lots of luck, and health. Thomas in Calgary AB.

Hey Big Twin,

Did you ever figure out how to find a CCC near you? I noticed you live in Missouri. Barnes-Jewish Hospital, which is affiliated with Washington University is in St. Louis. You might try there.

-darcy (Matt's Mom)

Hi Big Twin;

I have arrived a little late and don't know where your decision rests at the moment, but for what it is worth, I'll share with you my point of view which I believe is widely held and well validated through positive results. Take the most aggressive course that is recommended right from the outset, because you really only get one first shot at a cure.

I recall one radiation technician who was charged with educating me for the daily radiation regimen - you know, what to wear, what to expect, and so on - and he referred to my case as being a "serious cancer."

I knew what he meant, but to the lay person, any cancer is a serious one, especially if you're the patient. But I'll never forget the look on his face when he used that phrase; my prospects for survival were remote, and everyone had accepted that except me; realizing the seriousness of my situation was one of the scarier moments for me.

Ken went on to explain that they felt that my disease had advanced to the point where I had only one good shot at it, and they'd rather take an aggressive approach in the pursuit of a cure right from the beginning than be distracted with concerns about side effects or quality of life issues at that point in time. I didn't want to leave anything to chance - my survival in particular - and I couldn't wait to get started.

To me it was like getting on a roller coaster the first time; once that safety bar clicks closed, and the cars start to move, there is nothing you can do now but hold on and hope for the best. No sense in freaking out or worrying about the outcome because you will get there soon enough. May as well just set your mental attitude switch to "Full Persistance" and get ready for some heavy weather.

Anything less is like the fellow who smoked "light" cigarettes; did he believe he might only get "light" cancer ? Or what about the boater who questioned whether he should wear a life jacket or not. As a member of the Coast Guard Auxilliary at the time, my most frequent reply was "wear one only if you want to be found..."

Cancer plays by no rules and where no holds are barred. I believe you must fight fire with fire, and in order to give yourself the best possible chance of a cure you must put the pedal to the metal so to speak, full force, and keep it there for as long as you possibly can. Cancer is a disease you only want to battle once; trust me on that one.

But whatever your decision, I hope it will be on a fully informed basis and made only after much consideration of all the options and recommendation available to you. Once made, stick it out to the end being mindful of flexibility and adaptability along the way. When its all said and done, the decision you make will be for keeps, and hopefully it will be the one that works for you.

The cancer community is a phenomenal group of dedicated, caring professionals who have a genuine interest in your survival. That much you can take comfort in and be assured of in my opinion.

I wish you every success in your treatment, and while you're at it, be sure to kick this horrific disease in the butt for all of us!

All the best,
JT2

I go to Ohio State James Comprehensive Center.. they are 1 of the top 15 in the country

I constantly talk myself out of posting, because I don't want our path to affect any others, but maybe I'm wrong.

Dennis was diagnosed in 2002 with stage III tonsillar cancer. He endured rad and chemo then, but, because he wanted to preserve his voice, we opted out of surgery. His line of work relied on his voice.

He had a PEG tube at that time, but refused to use it. By God's good grace, he achieved remission (only after losing 40 lbs).............for four years.

One month shy of his "so-called" five year mark...he was diagnosed with worse news.

I remeber the radiation oncologist talking to me during his first diagnosis. She told me upfront that this was her only chance of curing him. This was it. He had to quit drinking, and smoking. I'll never forget her wiping tears away when she saw our youngest son playing in the halls.

She didn't lie. He didn't quit drinking (not for two years), and never quit smoking. (More heavily, if you ask me)

You have one chance to beat this cancer. Take every advantage given to you. This is not the time to think you are invincible. Yeah Dennis did,....now he has no tongue, no voicebox, and we are fighting the insurance just to get him food.

Please, take advantage of every source available. If the insurance doesn't approve one method of treatment, and you want to persue it, call back in a couple of days. In my experience, even though you think you have exhausted all avenues, it isn't necessarily so. You wouldn't believe the issues I've faced just getting Dennis his Jevity.

Take a stand. Don't be intimidated by the so-called "doctors". This is your life,......fight them for all it's worth.

Take every avenue available, and God Bless.

Love,
Mandi

Seven years ago I had a stage 1 removed from the left side of my tongue. I had radiation and it was miserable but I got through it, lost all of my saliva glands and some taste ( the taste came back somewhat) Now I am sure it is back, almost in the same spot. Have a Dr. appointment in two weeks to see what is up, I thought that my Dr. told me once you have the radiation and it comes back there is no more radiation that can be had. Does anyone know about this?

Con,

You can have radiation again in many cases.

I suggest that you start a new topic as this post is bound to get lost here as you have posted in someone else's thread..

Jerry