I've tried, over time, to get past the dismal statistical prognosis for stage IV tonsil cancer. Almost two years out from my husband's treatment, I thought I had put the numbers behind me. But he is just now starting to look at some of the web sites where you can find the numbers. I think that he had too much to deal with before. Anyway, he is happy to have made it to almost the two year mark (because I have told him that is a good place to be) but also seeing the stats quoted for 5-year survival rates... 20 - 40% survival for stage IV. I'm having trouble giving him a positive spin. Don't quite know what I am asking for. Guess I'm just looking for some wisdom from some seasoned soldiers in this battle.

Best,
Anita

Hi Anita,

My husband had the same stage tonsil cancer as your husband, and it has been 3yrs. 7mos and just the other day he was talking to someone about the Doctor being so point blank about it being 10 percent if he had no surgery and only went the Chemo/Rad Route and 40 percent if he did the whole nine yards, which is what he did. I keep telling him statistics can't always be correct because everyone is different. I said I also think the Doc tried to scare him a bit too, he said it was aggressive and needed to be dealt with.
It bothers him that when he sees his ENT/Surgeon the Doc seems very surprised that he is okay. (Knock on some wood) sorry he is due for an appt and CT scan soon.
Dan usually doesn't talk about the cancer,but he says everytime he looks in the mirror you can't forget about it because with the type they had it is obvious, at least it is with my husband Dan he had a radical neck disection and he gets annoyed with people doing double takes, or asking about his "accident"...I just keep telling him at least he is around to be stared at!!!
I have told him that so many on this site have never went into remission and have had one battle after another....Time to count our blessings.

Take care
Sherrie

Anita, this is right up my alley (and I am 3+ years from diagnosis). I have copied a post I made in 2003, but it is still valid. Ready?
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I was a math major in a long past life and the area of statistics was of particular interest. I can make them say anything anyone wants.

So. Each of us is a particular set of circumstances that is unlike those of any other person. We are only our own statistic! If we seek appropriate treatment in an appropriate time frame, if we follow all recommendations, if we have a positive attitude and faith that we will survive, odds are good that we will.

The oft quoted statistics include those non-compliant patients who continue to smoke and chew and drink, the people who went in with other disease like heart or cirrosis or diabetes, or just advanced age. Also those who have chosen alternative and unproven treatments outside recommended mainstream procedures. All of this has absolutely nothing to do with most of us.

The odds are not good, but I might be run over by a bus tomorrow. The key here, and this is VERY important, is that nobody can see into the future. I repeat: nobody can see into the future. What this means is that to spend time and energy worrying about what you cannot know is to degrade the quality of life. We need to celebrate the fact that we have, for at least a while and perhaps for a very long time, defeated a terrible enemy. Life is for NOW. Life is for LIVING. Life is NOT for obsessing over those things we cannot change.
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I am now down off of my soapbox but you can see this is a hot button issue for me. I don't want to see anyone making themselves sick over numbers that mean nothing.

I will add to this the provision that we all go to our follow-up appointments, because if there is a recurrence, the earlier it is found, the better chance there is to again defeat it.

Joanna, former stage IV, who hopes this helps

Anita, My wisdom says;"when you get up in the morning you are on the good side of the statistics". This is not to be funny, but there is NO way for an individual to know. The statistics are averages of large numbers of people. They do not work except to prepare treatment options and data for research. We have lost people here that were stage one and we have many that are still around after stage four.

Stay in the moment you know you have.

I hate the statistic thing. I remember when my husband was diagnosed, the first question he asked was what are my chances. The ENT told him that he had about 80% survival.

My first thought was DAMN that is great! Something really positive to hold onto. But that feeling dwindled as I was exposed to his reaction. He basically is convinced that there is the 20% and someone has to be part of that and it will be him.

It didn't help that he was diagnosed clinically depressed shortly before his cancer was found. He has harped on the statistics and he makes me wish everyday that they didn't exist.

He then asked the doc what the over all life expectancy was. The doc spit out some numbers about how many years he can expect to be taken off of his life and that his normal life expectancy was 78 and etc.etc. By the time he finished it was easy to calculate that he was essentially giving him less than 15 years after he beats the cancer. I cringed and bit my tongue as he was saying these things to this person who did not need to hear it.

I hold onto the hope that he will be fine and that he will beat this thing. I just wish he could let him self feel the same.

Cindy

I was told all the same statistics. I sure had some pretty low moments last year, but I've always believed I could beat the odds in anything. If the cancer comes back then I will fight it again! Call it a boldness, assertiveness, aggresiveness, I don't know what! It's part of who I am. It makes my wife nuts sometimes, but oh well! It served me well last year & still does today. Mind over matter. I believe I will live to be an old man & see many grandchildren! HaHa!

Anita,
My husband was stage IV tonsil cancer, had only radiation, and he will be five years out this May. It is very scary when you read all the statistics, but I hope it helps to know real people who are doing great 3, 4, and even 5 years down the road with the same stage.
Blessings,
Julie

Anita,

I was lucky and didn't have as late stage of cancer. After I was diagnosed and before I started getting in to see the doctors, I was a mad woman researching on the internet. What I found absolutely terrified me. A good friend thought he was being incredibly helpful and bought me some research book in adobe acrobate format.

Thankfully a co-workers wife worked at Dana Farber and spoke with me during that limbo diagnosis to doctor period. She told me to put all those things away and never look at them again.

It helped to understand that those are 5 year statistics. Not today's statistics. Even in 5 short years, they've had come so far with medical technology and treatment. Forget those statistics, your husband is his own, so help him go out and prove it!!!

Sabrina

Anita, as noted above, statistics can say anything you want to say. So ignore them. Statistics don't apply to individuals. Have faith that the medical team will do everything they can to defeat the disease and your husband should do everything he can to help them defeat the disease. If you have done all you can, then there is no point in worrying about the outcome. What will be will be and there is nothing else you can do if you have done all you can. Rest easy. All us stage IV's have to stick together.

Hi Anita,

I am also a tonsil cancer (stage 4) survivor of almost two years. When I read about the survivol rates for stage 4 cancer I thought I won't be around long.
I was lucky enough to get some sound advice from this forum.
The numbers mean nothing to you or I. Your husband is only one person and thats how he should look at it. He will either survive or he won't. He can do everything in his power to fight this bastard of a diaease.
When I had a reoccurrance last June I started Chemo and so far it's doing it's intended job.
Scans in late dec/04 showed the metastic cancer that was in my lungs in June was completely GONE!!! The cancer in the original tonsil area was termed stable. No growth there in six months.

We are all different and react differentely to the same treatment. My advice to you and your husband is to enjoy each day to the fullest, don't let cancer or it's statistic's dominate your thoughts. Like Mark said some lose the battle at stage one and some win the battle with stage four.

All my best, Danny Boy