Hello everyone.
I'm new to the site and have already received lots of support from the survivors here. My husband Doug was diagnosed with stage IV T4N2cM0 base of tongue cancer and will be undergoing chemo with 5FU and cisplatin on Monday 5-2 as well as conventional twice daily radiation therapy treatments. Everything I read about the staging of his disease is somewhat bleak. He's 47 years old, has a great attitude about this and other than some swelling along the jawline and under his chin, he looks great. I am so concerned as I wonder how accurate is staging as some of the studies I read exclude those patients with T4 disease since they are considered non resectable. Any information would be greatly appreciated as I want my husband considered to be among some of the wonderful survivors I have seen on this website. Thank you.
Sincerely,
Virginia
Wife to Doug T4N2cM0

Virginia
Please concentrate on the positives and forget about the negatives. It will not do anyone any good to worry yourself to death over statistics.
Easier said than done I know but, instead use your energy to help him and the kids through this.

Your frame of mind needs to be , anything other than complete recovery is unacceptable, and go on from there!
Take Care
Marica

Thank you Marica.
I am driving myself crazy. I'm doing whatever I can to help Doug...including vitamins, fruit and vegetable juices, whey shakes. I guess now that he's starting treamtment I'm even more worried. I'll take your advice and just concentrate on my husband and not the numbers.
Thanks again,
Sincerely,
Virginia

Hello Virginia,

I to was a stage 4 and am around to talk about it almost two years out. The stat's don't mean a thing. He will either survive or not. I would take the approach that He's going to be around a long time. The treatment and quality of life issues are a problem but alot of us don't experience the worst of them. You can overcome the side effects, it just takes time. Think positive and keep posting concerns you have.

Best Wishes, Danny Boy

Virginia: Staging is fairly accurate. Do realize that 20% of those stage IV (or is it 18%) DO survive beyond 5 years. Given the mature age for most oral cancer victims, this isn't bad, but it isn't great. It is hard to live with uncertainty, but there are plenty of people on this site that have lived longer than expected. The statistics are generated at a statewide or nationwide level and one cannot extrapolate (a statistical term) from that higher level to the specific level(your husband's level). You cannot worry about statistics. Just make sure your husband is getting good care & go from there. Tomorrow is promised to no one. My mother used to tell us kids to appreciate my grandmother (her mother) when she came to visit us in California since grandma had had breast cancer and we didn't know how much longer she would be with us. My grandmother outlived my mother (her youngest child) by 12 years and also outlived half of her children. You never know! Marcia & Danny Boy are right, just focus on the moment, stay positive & don't worry about the numbers. Good luck - Candace

Thank you all so much. It's difficult as you all know when you love someone so much you just want to make sure nothing bad happens to them. I guess I'll just have to let the days happen and not worry. I'm certainly going to try. Thanks again everyone. Hopefully my next posting will be of a more positive nature.
Thanks again,
Sincerely,
Virginia

Where do you get 18% number from? My AJCC chart lists around 30% for stage IV five year survival. Like others have said, the staging doesn't take into consideration other health issues and many other variables. We have had many discussions in the past over this issue you may wish to do a word search in the archives. The statistics are also lagging behind advances in treatment. What does the doctor tell you? Mine gave me an 80% chance of 5 year survival - I like her numbers a lot better!

There have been stage I & II patients here who have died and Stage III & IV who have survived. Keep a positive attitude. Stay in the "now" and take it one day at a time. Ignore the statistics.

My tumor wasn't non-resectable but they recommended against the surgery as being too invasive and causing too many quality of life issues. The radiation and chemo were sufficient and I am 25 months cancer free today.

You may wish to consider anti-anxiety meds. I took them for months myself. Being a caregiver, in many ways, is tougher then having cancer.

Virgina

I was staged at IV also. This also freaked me out, but as I got into the treatment that was soon forgotten. You have an up hill battle, but go into it as a battle. I am 4 years out and I am going to be around alot longer. My inspiration is a guy here in my home town that had oral cancer and the doctors gave 6months to a year to live. He is 15 yes 15years out. So you never know he told me to fight like hell and that is what I intend to do. Keep the faith.

Hi Virginia, another Stage IV person chiming in. I thought all along that I was Stage II, (tongue cancer)until about 1 1/2 years after diagnosis, surgery, radiation, etc, I read a prescription from my oncologist for physical therapy and it showed STAGE IV and I did flip out. Just seeing it in writing. Mine had gone into two lymph nodes. May 10th will be 3 years since diagnosis, not sure how long I had it prior to that, but I am still here!
God Bless You, Keep thinking positive thoughts!!!
Carol p.s. Joan, I loved reading about the 15 year survivor!!!SMILE!

Another stage 4 cancer patient here, now 6 years out. We have a ton of late stage survivors here. Don't get caught up in statistics, as they may not be drawn from, or represent people who are just like any given patient. There are too many variables, let alone our individual unique biological makeup. This page in the web site has a few observations of mine on this issue http://www.oralcancerfoundation.org/facts/stages_cancer.htm

As Gary mentioned, this has been discussed here many times before and a search under the word statistics will bring up some of those long posts where we picked apart the idea and its value or lack of it.

None of us can predict the future, and that includes doctors. Live each day fully whether you are ill or healthy. That is the best we can all do. As much as we know about this disease and survival rates, what we do not know exceeds that knowlege. Put your energy into the postitive, no matter how small a part of each day it may be. The odds makers do not have a crystal ball, not in cancer, not in Las Vegas.