I just wanted to take a moment to write a positive story here. When I first received my diagnosis at the age of 28 I was terrified and most of the stories on the internet made it worse. I don�t want to diminish the pain and suffering that many with oral cancer endure. I just want to give a positive story.

My diagnosis of a Stage 1 Grade 1 tongue cancer came in March 2008 and on April 4th I had a modified radical neck dissection and wide excision of the affected area of the tongue. The first week after surgery was hell, but the 2nd week was much better and I was even able to run a few errands. I returned to work after 2 weeks. After about 4 weeks, I was more or less back to normal. I�m a little over 7 weeks out now and I have nearly full movement back and no pain in my neck. I have a big hard spot where the lymph nodes were removed, but it is starting to soften up. My tongue feels a little strange and hurts sometimes, but I do NOT have a speech impediment and I have full ability to taste.

There is a lot of talk about recurrences on the internet, but good statistics are hard to find. If you Google Merck and tongue cancer you will find that the odds of recurrence are 12% if you quit smoking and 30% if you don�t. If you make all of your follow-up appointments, any recurrences will be caught and dealt with early.

There is also a lot of talk on the internet about 50% survival rates. It�s important to remember that those rates are mostly a group of older smokers/drinkers who are at risk for a number of health problems. Oral cancer is only fatal 25% of the time and most of those are advanced cases where the cancer has spread before diagnosis. My doctor tells me that if I lay off the smoking and drinking that I have a 90-95% chance of being cured.

This is all about attitude. Getting cancer has probably been one of the most positive experiences that ever happened to me. I highly recommend reading Lance Armstrong�s book and checking out the LIVESTRONG website.

Thanks for the positive story and the demonstration of commitment and attitude. While there are more nuances than perhaps you are allowing for, your basic premises -- statistics are not the defining element, take responsibility for your own recovery (i.e. quit smoking), and adopt a "can do" attitude --- are very sound.

Regardless of the varying physical challenges that we endure, depending on our treatment regimens and responses, we all share the terror of the diagnosis, the anxiety over outcomes and the uncertainty of the future.

Thanks for sharing a positive story, and putting some basic things into focus.

I wish to applaud you for your positive attitude and telling your story here. Good news is always welcome. I am pleased that, so far, you have had a positive outcome.

I spend a great deal of time lecturing on cancer programs with people whose knowledge is considered cutting edge, and armed with that information, (and having many of them on our science advisory board) we attempt to put out the best information possible. As you state, the web is a place where too often incorrect information is more abundant than that which is correct. In that light, what you have found and quoted here is not 100% accurate. You should check with the CDC SEER database, or the national cancer registry, and you will find that this disease is a killer way more than 25% of the time. (Perhaps you are referring to your particular staging which is on the extremely early end of things, making your survival numbers better statistically.) Please also remember that we have had people here posting for years, some of whom made all their follow up appointments diligently, and when their recurrence was discovered, it ran like wildfire, and metastasized rapidly to places where it finally took their lives. There are certainly no guarantees in all of this, and therein lies the sword that we all live under as the previous post alludes to. It is always an advantage to catch things early, but sometimes the recurrence is visually occult, the doctors who are not infallible miss the beginnings of it, or it is just a particularly rapid spreading event. We can never state things as an absolute, there are just to many variables.

You were very lucky to have your disease found at such an early stage, most people who come to this disease do not. Therein lies why the survival (let alone the extreme morbidity of the treatments) numbers can be quite dismal. With 2/3rds of people being initially diagnosed with a stage 3 or 4 killer, the SEER numbers for survival in those people are far from what yours were. When you combine those high stage discovery people (even with no collateral illness or frailty) with the one third that has an earlier stage diagnosis, you find what pushes the death rate percentages up. Odds of recurrence vary on etiology and staging, and broad generalizations such as you have made are not accurate. Viral eitiologies have better survival than tobacco causes, early stages better survival than late. People can make the general statements, though they are not a guarantee. Within all this there is no hard rule that you can hang your hat on. We has seen early stage patients lose their battles, and late stage 4, bilaterally metastasized patients such as myself, still be around a decade later. Cancer is definitely not a world of absolutes.

Please do not take any of these comments in any negative manner, but just a desire to put the correct information out there. We all hope that your doctor's opinion of your future is true, and you have a long lifetime of health ahead of you.

I also am a big fan of Armstrong's and if you read the LAF's LiveStrong: Stories of Survival book, you will see my story in it, and portions of it exist on the LAF website as well. I have also been a member of the Lance Armstrong Foundation's grant review committee.

You sound positive like I do, but I had to lose part of my tongue , had the neck dissection on the left side, a number of
biopsies before surgery and a few since. I have the attitude like yours, but am not as lucky. LOL. The Dr that did the surgery at Ohio State kinda blew his theory that he got all the cancer and I didn't need rads or chemo. He was wrong and I been thru hell since, but will kepp the positive attitude. Let me tell you Congrats on your good luck and may you live a long long time. Had to lose my teeth too. But supposedly I'm Cancer free right now.

Texas,

I too had Tongue Cancer stage 1 in 2004. In 2005 recurrence stage 3&4. So do celebrate but please have a another scan done every 6 months. Always be on guard and keep an eye out. See Signature below.

Happy things are going well for you, and your progress sounds good.

Take care,
Diane