Mike, The same thing happened to me--when my tonsils were removed (not knowing there was a tumor before surgery, the doctor removed as much as he could when he discovered it), the hospital reported clean margins. They said I would only need radiation on one side, no problem. When I went for a second opinion at Dana Farber they reported the margins were NOT clear. So I went from radiation on one side to full neck radiation, chemotherapy, a feeding tube, and out of work for six months. They said what was left behind was microscopic and the cisplatin should clear it out. A second surgery would have been a MAJOR deal, so they thought it was not worth it. Thank goodness for second opinions. Staying with the first hospital could have been a devastating mistake. Good luck to you!

Girlcat & Joanna:

Thank you for your input. I hopefully start chemo/rad. next monday. I still have PEG tube in so I hope to keep my nutritional needs met.

JOANNA: You bring up a point that I would like to discuss/research more: Since this disease is heavily linked to addictive behaviors (drinking and tobacco use), how much of the stats are skewed because people are unable/unwilling to quit the addictions after diagnosis. It just seems to me that this would play a huge role in the stats that I read.

Please let me have anyone thoughts on this issue, and any empirical evidence they may have come across.

Good Luck To All & Please Live Each Day With Dignity!

Mike

Mike, when I was getting rad, the techs told me about two other head and neck patients who smoked out in the garage until time for their rad. Techs were complaining that they were wasting treatment time on these guys. If there were two at that one hospital, there must be hundreds of thousands more who are what is termed "non-compliant." How you would get this information, though, I cannot imagine. I only learned about those two guys because the techs and I got to be quite friendly.

There are intangibles, also. For example, I was absolutely sure that I would survive and live to be a he**-on-wheels old lady. Just last Friday my ENT recalled my telling him that going in, and said he believes people like me have a better chance of overall successful treatment.

Long ago, in a distant galaxy, I was a math major and intrigued by statistics and probability. I still am, but see no way to collect accurate data about all of this. More power to you, Mike, if you can do it.

Bottom line, if you can manage to stay on the green side of the grass, I don't think the odds you might have beaten to get there are as important as the fact that you are still here.

Joanna:

Thank you for your input...I too was a student of statistics, and know how amenable they are to manipulation.

I am curious about the survival stats b/c I (and I suspect many others) get depressed by them. I know I need to keep on the positive side...I can get diverted at times by such things.

Anyways, I go in a few minutes to meet the radioligist and get a mask, etc. Hope to start TX next monday.

Take Care!

"My question: Why don't they go back in and cut some more of the tissue???? Has any one heard of this?"

Mike, the same thing happened to me with margins and they DID go back and cut out more. This was because at the time they weren't sure I would need radiation.In the second surgery, the additional tissue showed no cancer so basically there just had been no margins the first time but probably no cancer remained. Anyway, I ended up having chemo and rad because I had an aggressive tumor in other ways. But I'm also glad I did because my ENT, who is a very good doctor, said he was pretty sure he had removed more tissue all along the spot where the margin was not clean but it sounded like there was some possibility in his mind that in the second surgery, he hadn't captured all of that margin.

As for mortality statistics, coming from another person with lost of training in research and stats, and I think it would be hard to get good data on people who continue to smoke and drink versus those who don't in part because many people wouldn't be honest about reporting it. But lots of the stats that are out there are also not representative in other ways (for example, they are from a time when adding chemo to rad wasn't standard therapy and as you've already heard, that addition causes a large improvement in outcomes). Listen to what your doctor says about your chances and don't pay too much attention to the overall survival stats out there.

Nelie

Mike,

Never mind the Statistics, the only one you want to watch is your own... Everyone of us goes through this differently.

I started with Stage I with tongue in 2003 and went to Stage IV in neck & lymph node 2005. I had Chemo and Rads after surgery on neck 2005 & 2006. I finished Jan. 2006. I think I am doing OK. I do have a few side effects but we all do to some degree. You learn how to work with them.

My point is take one day and one treatment at a time. There will be days it will seem like hell and others will be OK. It will take time for you to heal. Just know we are here and we will help you walk through it. OK?
TODAY IS A GOOD DAY BECAUSE YOU ARE GETTING HELP TO FIGHT YOUR CANCER.

Take care,
Diane