OK, I know that I should not get hung up with the numbers, everyone's situation is different, the future isn't determined yet, etc. but everytime I look at my wife, I can't help thinking of the odds. I see the numbers on this site stating 5 year survival for all oral cancer at 50%. Not only is there the cancer to deal with but she will be starting chemo/radiation in the next couple of weeks. Currently, she weighs about 93 pounds at 5'2" tall, from everything I have heard, there is typically weight loss during treatment. She doesn't have any weight to lose. At a Stage IV with lymph nodes on both sides of the neck positive, I don't think there are many options. The only thing her surgeon has said is that she has an excellent chance at being "cured". I have not wanted to discuss this in front of her as she has not brought it up. Am I worrying needlessly or statistically, is this a 50% prognosis?

Tom
stats are a nightmare.Rob was told he had a 90% chance of ten year survival!!!!All i can say to you is that statistics make you more aware of potential problems,and may help you to be more vigilant and aggressive with doctors post tx.

The positive nodes on both sides of the neck,obviously make things harder for her,and the tx will be rough.rob had radiotherapy to both sides and his throat,and he did not take it well,but being prepared,and acting quickly if she gets in to trouble will help ease this a little.

With Oral Cancer no one should ever tell you you are worrying needlessly,just try not to anticipate problems,just deal with them as they come.Knowledge is power,but it is not always a good sleeping aid.

good luck to you both,and keep up the excellent work you are doing as her carer.

love liz

stats are based on other people not your wife that is what you need to remember. none of us are promised tomorrow with or without cancer and doctors have given people a clean bill of health only for them to walk out of the office and drop dead. these are what i remind myself of.

regardless of the odds and stats, we fight with all our might and then trust the one above to make it all work. my doc said he felt the odds of reoccurence for mine are lower than the stats show, because of where it is, how soon it was caught etc ... radiation oncologist said with surgery only my odds were 50-50 of it coming back - and with radiation about 15-20% chance of it coming back ... my thought is only God knows and I trust in Him to see me through both the here and now, and what lies ahead.

We have to remain diligent but not worry until there is need to worry. Worry only robs you of what joy the here and now can bring which is what is important.

Your wife is young which helps her prognosis and the status of her overall health is much more important than her size and weight. Have faith and trust all will go well and handle the bumps as they come but don't use your energy in fear. Use that time and energy to love on each other and enjoy the time you have been given to share. I wish you both the very very best. You are a great hubby who shows how much you care. I am sure she is grateful to have you by her side through this.

Tom:

Im glad your post started out with knowing everyone is different. Its good that you are reading the posts here and understand that. That is a key phrase in fighting cancer. Everyone does respond differently to treatments with different degrees of reactions to the treatments. One of the best posts you could read here is under Getting Thru It Project, its called Draft Copy.

Your wife has many doctors watching out for her. Has she seen a nutritionist? Does she have a peg tube? My radiation nurses would weigh me everyother day when I started to lose weight. The rad doctor would call my nutritionist to come see me when I was having trouble keeping weight on. The nurses even had me bring my cans of formula with me to radiation to help me with my feedings when I was struggling. My chemo doc was also on top of this too.

Your fear is a very rational one. Its so scary being diagnosed with cancer and going thru treatments. There were some terrible days where without the hospital staff I thought I wouldnt get thru it. That was me, I didnt have a spouse caring for me. Your wife is about my age, she has a loving husband to help her every step of the way. That will help her tremendously. Please keep asking questions here, you will have OCFs support to help guide you thru this. Best of luck.

Tom-Worry is a really consuming emotion. Believe me I know. With all of it that I've done-things are still what they are going to be regardless of how much I'm distracted by it. It's almost 1 year since my husband's surgery and it is getting a little easier to live in the moment. Worry can help you in some ways too. If you suspect something is not right with how your wife is feeling, don't hesitate to call her doctor. Worry can also help you realize what's really important. The stupid little problems in life seem so much more insignificant. Good luck to both of you during treatment and keep posting-I've gotten my best info here.

Sue

The numbers are scary, but there are a number of things to consider. First, remember that statistics are based upon the entire universe of people. Some do not follow doctor's instruction, some have co-existing illnesses and issues that impact their prognosis. Many receive care at places where resources and knowledge are not as advanced as at a local CCC. All of these things impact the statistics.

There are numerous variables within our disease as well -- i.e. tumor size, tumor grade, extracapsular spread, etc. -- all of which impact statistics in ways that medicine still is not fujlly cognizant of.

Treatment is rough -- no question about it. However, some of us got through the radiation and chemo with minimal acute effects, and manageable long term effects.

The combination of neck dissection, surgery, radiation and chemo is a solid, aggressive treatment program, which provides the best odds.

Remember, when we are engaged in this battle, we for some reason always focus on the "bad" side of the odds. I personally have a tough time with the fear of recurrence, yet statistically, in my particular case, the odds are somewhere under 3 in 10.

The point is that we can find and use statistics in any way we want to -- to encourage us or scare us. By having an experienced medical team and an aggressive treatment protocol, your wife's chances are maximized.

Forget the numbers and just focus on getting through each day. I like what Jim Valvano said when he was going through his battle -- (paraphrasing) use each day to think, cry and laugh. If we can do those three things each day, we have had a helluva day.

ACK!! Don't look at numbers. Create your own statitics and fool them all!!! I gave up on statistics when I was diagnosed because I didn't fit any of them!

I second what everyone else has told you. Please read the editorial comments on this page http://www.oralcancerfoundation.org/facts/stages_cancer.htm Hopefully some of this will give you a more realistic perspective and help you gain a little optimism.

I never think of reoccurence and just enjoy whatever comes my way. I feel enjoy life at it's best while you can and have a smile a day for something different. Hell, at my age, it's just nice to wake up and see daylight. LOL.. But you know what? I'm going to make the 90 year old mark just so my kids say, when is that old fart going to die? Get even time for me then.

Hello Folks, thanks for the responses. Pam has surgery tomorrow to get her chemo port and a PEG. At her appointment today they removed her NG tube. When she was released from the hospital from her original surgery, she had a "diet" set up by a nutritionist and sounds like when she comes home tomorrow that she will have a new or revised diet. I know last week at her radiation similation, I was surprised that they were not weighing her. I figured if they were making her mask, they would want to know what her weight was when they made it. I more or less insisted they weigh her and I believe she came in at 93 pounds. At a follow up today, I was a little miffed when the nurse weighed her at almost 95 pounds and said she was concerned with her weight loss. When I questioned that I thought she was the same or a little more than last week, I found out they hadn't recorded her weight the week before when I made them take it but were comparing to the first consultation in early July. Sorry, off the subject a little here. I think Jeff made a very valid point that the numbers include people that may not follow the recommended treatments. I know part of my hang up on the numbers is that I have not heard a number from any of her doctors and since she has not asked, I have not wanted to bring it up in front of her. For me, there are a couple of reasons that I really want to know. One has to do with before she had a biopsy in June, I pretty much had the attitude that the sore on her tongue was no big deal and the other has to do with sacrifices we are making so that I can be her caregiver.

I did find the "Draft Copy" and have started reading it. One suggestion would be to link that to the "New Here - Read This First" post. I know I have been reading many of the different forums here but had not ran across that one before Christine mentioned it.