I HAVE SCC CANCER AND HAD SURGERY ABOUT 2 WEEKS AGO , TUMOR AND THE CANCER IS AT THE BASE OF MY TONGUE WAS SUPPOSED TO START CHEMO AND RADIATION ON THIS COMING MONDAY BUT PUT IT OFF TO GET S 2ND OPINION FROM SLOAN KETTERING MEMORIAL IN NYC, THIS HAS CAUGHT MY FAMILY AND ME BY SURPRISE AND IM TRYING MY BEST TO FIND OUT AS MUCH AS I CAN.
5 OUT OF 31 LIMP KNOBS WERE INFECTED AND I GUESS THAT MEANS A STAGE 4 CANCER, AND NOW IM READING ABOUT A 50 TO 60 % CHANCE OF SURVIVAL RATE AFTER 5 YEARS, WHICH NEEDLESS TO SAY IS BLOWING MY MIND. ALL COMMENTS WOULD BE APPRECIATED, THANK YOU

Mr Moe,
Take a deep breath and know that you are not alone here. I am not from the NYC area but many on this sight have went to Sloan Kettering Memorial and received excellent treatment(use the search engine and you will see). You are about to start a very difficult journey but a very doable journey as you can see from the many survivors on this sight. As I have learned a cancer diagnoses always blows your mind and catches you off guard. I know exactlly how you feel as my father was diagnosed in January of this year and my entire family felt like we where in a hellish nightmare. Trust me when I say it will get better, time has an amazing way of helping one deal with things.
The best advice I can give you and your family is take it one day at a time, ask all of the questions that come to your mind, and don't get too far ahead of yourself(I guess repeating the one day at a time thing). You will find many on this forum that will be extremely helpful and supportive. Welcome.......
Kim S.

Dear Mr. Moe: Take a deep breath- John and I have been dealing with this for over 18 months. You have time to stop and smell the roses Panic-while natural- will not help you- getting organized and learning what you need to know will help you , as will a POSITIVE attitude. Please tell us more about yourself and your support system. Breathe Mr. Moe-Deep Breathe

Mr Moe
As you can see my hubby also had a stage 4...he is 3 years out and doing great. He was 56 when we started this.
This is NOT a death sentence, although I well remember that total panic when he was first diagnosed.
You will get through this.
It won`t be easy , cancer ain`t for cissies, but science has come along way in the past few years.
Hang in and start reading.
Marica

Mr. Moe,
Welcome to the OCF. Sorry to meet under these circumstances. First, try not to dwell on the statistics. They are just that, statistics,and they don't mean a thing to the individual patient facing this disease.

Next, to answer your question about where to start. Go to the bottom of this page and click on the link to the Oral Cancer Foundation homepage, get comfortable, and start reading.
This site will provide you with hundreds of pages of information.

I'd start with the Oral Cancer facts, and work my way through diagnosis and treatment sections. I would also encourage you to take notes about things you want to ask your doctors about. The more you know, the more you can participate in your treatment.
Encourage family members to read too. There will be times during this journey where you will be too tired or too distracted to act as your own advocate and it is extremely helpful to have someone to act as your advocate.
You are extremely fortunate to be in close proximity to a top level Comprehensive Cancer Center. MSK is one of the top rated centers in the country.
As you can see from my signature line, I too was diagnosed at Stage IV, and yet here I am 2 1/2 years after completing treatment, training for a fall marathon! Not everyone is going to recover to run marathons, but the attitude I have taken is " Why not me?".
Come back to the forum often. Keyword searches can help you to find previous discussions on subjects you have questions about, or just post your question. Someone will have been there and done that. The real beauty of the forum is that the participants here have been just where you are right now, and have travelled the path you are about to travel.
Keep us up to date on how your treatments are going.

Good Health,

Chuck

I WOULD LIKE TO THANK ALL THAT HAVE SO FAR REPLIED TO MY "WHERE DO I START"(DISTRESS SIGNAL). WELL TODAY I WENT TO NYU MEDICAL CENTER IN NYC TO GET A 2ND OPINION, BECAUSE ORIGINALLY I WAS NEVER TOLD ABOUT AN "IMRT" RADIATION, MY WIFE FOUND OUT ABOUT THIS "IMRT" FROM DOING RESEARCH ON THE INTERNET, ALL WE WAS TOLD WAS THAT I WOULD LOSE THE USE OF MY SALIVA GLANDS FOR GOOD. BUT WHEN WE MENTION THE USE OF THE "IMRT" TO THE RADIATION SPECIALIST AT WESTCHESTER MEDICAL CENTER IN VALHALLA NY, HIS COMMENT WAS THAT THEY DIDNT USE THAT MACHINCE THATS WHY THEY DIDNT MENTION IT, SO NOW I HAVE AN APPOINTMENT ON THE 26TH OF JULY WITH SLOAN KETTERING MEMORIAL AND I WILL MORE THAN LIKELY START MY TREATMENT WITH SLOAN ON THAT DATE. IM STILL RESEARCHING AND STILL SHAKING MY HEAD ASKING MYSELF WHY ME BUT AT LEAST MY MENTAL STATE HAS IMPROVED ALOT SINCE I AWOKE FROM THAT NECK SURGERY, ANY OTHER HELP OR COMMENTS WOULD BE APPREICIATED, THANK YOU

You are now on the right track! Sloan Kettering is a great choice. Amy

Dear Mr. Moe,
please use your lower case. Typing everything in upper case is the same thing as you shouting at us. You made a very good choice to get the second opinion on the radiation, especially at MSKCCC. There can be, as your wife discovered, significant quality of life advantages to using IMRT. They won't happen immediately, radiation is still radiation and it will take a good 18 months before your salivary function is back to some what normal levels.

Also, I must caution you, that some are not candidates for IMRT. If your cancer is poorly differentiated, they may decide that XRT (standard radiation) is best for you. it is still not the end of the world. Many here have had XRT and are getting by very well.

It will take a little time before you will be able to start IMRT if that is what the doctors indicate. They will need at least a CT and an MRI, and possibly a PET scan first, I presume you had already had all of your lab work done. Then you will be fitted for a mask to keep you in a fixed position while being radiated. The software programmers will have to develop a custom treatment package for you. Then you will go through a simulation and only then will treatment start. I was "fast tracked" and it took over a month before I started radiation.

Mr Moe,

I too had Stg IV but only two lymph nodes. The IMRT is much better able to pinpoint the radiation. I am 18 months out of treatment and have all my salivary function back. My MED ONC gave me ethyol injections for just that purpose. Ethyol is supposed to help protect galndular function in Rad patients. Some say it doesn't work, but my contemporaries who couldn't take the ethyol have much worse salivary functions than I. Those that had ethyol are doing much better. Not all can tolerate it, but I think it helped me.

Good luck & keep us posted. The people here are a great source of information and support.

Steve

ONCE AGAIN THANK U ALL I AM SURELY FINDING SOME VERY GOOD POINTS FROM YOU ALL , im trying to decide on the ethyol for my salivary glands and i do know that i need to get this treatment started right away so my plans are to contact sloan tomorrow 7/17 and see if they have any cancellations for this week instead of waiting for my appointment on the 26th. my neck surgery was on the 27th of June so i dont want to put this off any longer than i have to. .....oh and sorry if i type in capital letters , im not trying to shout but im used to being in CAPITAL LETTERS
good luck to you all