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.

the docs base everything on stats .. i for one never listened to them, the stats in the beginning were very nice .. but once the cancer came around the second time, the stats were junk .. and as the treatments went on the stats kept getting worse ...

i didnt let it get to me,, but i think about those stats quite a bit.... i would ignore it all and keep supporting ur wife with all u got

Hi Herson,

Glad to see you back out here. Hope all is well.

Joy

Tom, I am now 9 months post tx and my TEAM never gave me any numbers as none of them (all six) belive in them! First and foremost is that both of you follow the Doctor's orders to a "T", both need a positive attitude as this is going to be a hard fight for you both, the sacrifices will be well worth the effert when this is completed! I attacked my Cancer as if I was back in a WAR, I fought this enemy on a day to day basis and would have had a harder time without my caregiver having the same mentallity. Make sure she gets plenty of calories and drinks plenty of fluids to maintane her weight. The members of this site will help you both thru this ordeal, they are the best!Semper-Fi Bob

The numbers don't help. Nothing is set in stone and there are too many variables for any of us to be thrown into one percentage or the other. You have smokers, chawers, drinkers, viruses, cheek biters, tongue chewers, dentures, rough teeth, gum diseases, chemicals...multiple causes...too much to mention, the list goes on. Sure, the obvious may give one an idea...but why go there? The most important thing is to know what is bad and what is good for your situation and live accordingly, i.e., if you smoke...STOP. Sometimes it's better just to listen do the best you can and pray for a healthy outcome.

We were getting ready to go out and my buddy says, "I'm starving to death..." His father looks at him and says, "If that was true you'd be A LOT THINNER!" Twenty years later he's still on the heavy side.

I wouldn't fret the numbers...The only one that matters is the one we're doing now...breathing.

Tom,
One of the first lessons in any course on statisics is the "Gambler's Fallacy." Every penny toss has a 50/50 chance of being heads or tails. This does not mean that if you toss a penny 100 times it will fall 50 heads and 50 tails. It means that every time you toss that penny it has a 50/50 chance of being one or the other. The only statistic that is 100% accurate is that if you are born there is a 100% chance that you will die some day. Any other statistic is based on the premiss that all relevant factors have been considered and they will not change.

When I finished my radiation treatments, my ENT told me that I had roughly a 60% five-year non-recurrence prediction. A year later, having had a clean CT/PET scan, he said the number was now in the 90's, but a year and a half after than I had a bad biopsy, meaning my number was now ZERO...

Now that I've had my free flap done and more cancer removed, I don't know what my new numbers are and I don't much care because they don't mean much.

I heard a horrifying stat for me anyway....I was told that if only one spouse tries to quit smoking that they might as well not bother cause the spouse quitting is doomed to fail...odds are nill for success sure made my day

That sounds like something someone who really doesn't want to quit would say -- Indeed, it is more difficult to quit if others around you are smoking, but it's not impossible.

That's bull. If you want to quit, you will quit, PERIOD!! It's an addiction, a powerful one, but you can do it with or without ANYONE'S SUPPORT.

this was actually what my nurse told me she was trying to encourage my husband to quit with me and told me that the chances of me being successful decrease or are almost nill because of the spouse not quitting...and I have I just was passing on what someone had told me...

David -- I couldn't agree with you more. I BS'd around with quitting for a long, long time, and someone said that very same thing to me. Done. Of course, a cancer diagnosis is also a great motivator. . . .

There are no magic bullets. I work with addicts and alcoholics, as I also have about 15 years sober. You have to refuse to let yourself be a victim of your substance, whether it is booze, drugs or nicotine. Nobody can make you smoke but you. The rest are all BS justifications.

When given a choice between my life and my cigarettes, it was the biggest no-brainer of my life. Haven't touched one,didn't do any programs, drugs or patches. As the Nike folks would say -- just do it.

I sat by a woman that must smoke in bed. It sure wasn't the tub that gave her that smell. She reeked of nicotine and had BO too. I tried to get inside the walls to get away from her and then to top it off, she is one of the coghers, or more like gaggers. LOL Man did I feel sorry for the nurse that had to take her vitals. This is the 1st time a smoker bothered me with the smell. I quit for OC the 1st of Jan.

The nurse was trying to get your husband to quit and instead provided you with an excuse not to quit.

Clearly, her technique is flawed...

I stopped by my radiation center the other day to say hello and bring them up to speed on my latest bout with SCC -- There was a vehicle parked next to me in the parking lot with an overflowing ash tray like I haven't seen in decades -- Don't know how someone could be taking X-ray therapy and keep on smoking (maybe they were getting radiation for something else...).

While I was doing XRT, a fellow was coming in for lung cancer XRT and he REEKED of cigarettes -- I was going to request a change in treatment time to avoid the sickening smell, but for some reason they changed his time.

Pete,

Have you ever seen anyone smoking through a trach?

Nicotine is so addictive, that studies have shown that it is more adictive than either heroin or cocaine. Not sure which one was used in the study.

I was fortunate to have stopped smoking at the age of 18. Much easier for me after only 3 years of smoking, than a lifetime.

Jerry

Our first few visits to Moffitt Cancer Center in Tampa, Fl were disconcerting to me as you would see smokers (patients and visitors alike) standing/sitting outside the entrance....firing away. I just could not believe it.

At some point early this year, the Moffitt campus went totally smoke free...a much better message to all. How can you possibly treat the total body for cancer and condone smoking???

JMHO, Deb

I'm not saying it wouldn't be better if he quit and I'm not scolding you (yet) but you need to quit, period, with or without him or anyone for that matter.

I have and yeah it is really weird I don't crave or really want one the only time is when everyone goes "outside" it is the social aspect that I am missing...everyone is being very curtious about it all but it doesn't really even bother me around it...it is true oc is a good motivator to quit...but I have quit several times before and not made it...this time I feel differently and well I do know what happens if I have just one...I just gotta remember once I am better that's when it will be harder...when all the healing is done is when I think I will have a harder time with the "just one"....todate have not had any..but know where all of them are including lighters and let's face it is up to me...and I am marching forward one day at a time concerning smoking healing and well just about everything...Nobody plans to fall of the wagon with any addiction so for today (and can only speak for today) I choose not to smoke and until I get rid of the "wanting" to smoke it still is a fight and a choice...anyway one more day the battle of smoking is being won for me...I do have support from family in their own way...and I love them for it cause it is their choice too.I can't bully push lecture all I can do is just be me and hope they don't have the same route I have had. I was just pissed at that nurse she was trying to bully my husband and basically tell him that it would be his fault if I started again but it isn't it is MY choice...I just didn't think it was ok for her to although I understand her line of thinking I just didn't agree with it...

I guess this thread went from NUMBERS to smoke cessation. A good topic in and of itself.

So congratulations...you just have to make it one day at a time. It should get easier as time goes on and I hope that you can keep off the weed until you start noticing how much better you feel overall. You are right that having OC is a good motivator. The other times that you quit, you didn't have such a GOOD reson to quit.

We're all behind you and know you can do it. Good luck.

Jerry

Now you get my Gold Star to place on your forehead.

Way to go.

I'm surrounded by smokers...tried to get them all to quit one time or another...And here I am with OC...go figure.

Smoking is just plain bad.

sorry about changing the topic of the thread didn't mean to at all it was just that so much emphasis is placed on numbers and well yeah there are such things as odds but I more believe in fate and what will be will be...it is like a tornado will destroy one house and leave the next alone and it is also about choices...we have no control on some things it is just life sure numbers can help but no guarantees not for anything really ...oh thanks for the support and again sorry for changing topic.

Tom,

My fiancee took such good care of me during my treatment. I did not have the tx your wife is having and I believe hers will be harder. However, this made our relationship even stronger. Know that she will need you to be strong for her.

And I agree with everyone else. Every person is different and reacts differently to treatment. You can help her by being a positive force in her life.