Has anyone else on here noticed that we are hypocrites at times about statistics?? We tell people not to pay any attention to them yet use them when it suits us. I have caught myself doing it also. I see it again here in this thread. I would hate for this thread to worry or scare anyone that hasn't had any chemo, only had radiation. I would hate for them to feel like they have a 10%-13% less chance at survival as no one on here can KNOW that. Some that had chemo will die, some that didn't will survive, there is no way to tell as there are so many other factors.
Ok, just felt the need to say this.
Minnie

Well, the whole thing is it's important to understand teh limitations to statistics. And what they mean and what they don't mean. The percentage refers to some percent of people that would benefit if they had both chemo and rad. that won't benefit the same way from just rad. But no one can know whether they themselves are a part of that percentage--you either are or you aren't--that part is just luck plus taking absolutely the best care of yourself you can given what you know now and knew at the time.

For me, personally, knowing the percent of people for whom a tough treatment created a better outcome is helpful in deciding whether I want to have that treatment with the hardship and possible long term negative effects that it entails. I would rather know and make my own decisions about that than have my medical oncologist decide FOR me that, say, a 5% gain in disease free survival is enough that I should have the treatment and all I hear is that I need to have it. I recognize not everyone finds this info. helpful, though.

I'd hate to think we couldn't discuss this information because it is helpful for those who want to know about it. I never would have considered doing concurrent chemo had it not been for those numbers. But I agree we need to be remind people that there is no way tell what percent you would be in when push comes to shove.

Nellie:

Thanks for the comments. Regarding Dr's initials, it's just for reference to those who already know the Dr by name.

I think the reason we don't use whole names is for 2 reasons, (I am guessing), 1) liability (for statements made about a professional here), and; 2) the "free advertising" one might get.

Using the initials solves these issues and sticks to the spirit of the rules.

I'll be happy to be your guniea pig about the swimming...You should know however that I have found several different types of G-Tubes out there and it may have something to do with the type. There are NG, PEG. PEJ. BUTTON & GT/JT to name a few. I think Brian mentioned using bags for his, and mine uses a syringe instead.

As far as Dr's statements, I think you put more stock in their opinions than I do. Just by the shear fact that they disagree on some many minor issues is evidence some are wrong. They can't all be right when they give conflicting information.

I trust and respect the medical field, but they are not Gods.

I talked to a GI here and he said the eating same day had NOTHING whatsoever to do with the bloating/discomfort, and it was simply due to the technique used by the surgeon.

So, there you have it, another opinon

As far as stistics, you are right. But there are ways to interpret them for one's own intentions and I think now they are more confusing for me than anything else.

Good reply Nelie and you're correct. I realize the numbers are needed but just want to make sure that non chemo survivors are not spooked by all the talk about chemo/radiation.

I don't quote statistics when it serves me - only when it serves a fellow cancer survivor or caregiver. As a patient advocate it is important to give as much information to people as possible so that they and their medical team can sort out their treatment choices. Besides it's like apples and oranges - there is quite a difference beteween a statistic that will improve your survival odds and mortality statistics. As far as upsetting persons who had no chemo, well I have 2 responses:
1. There may be risk/benefit issues which they need to discuss with their doctors.
2. Treatment planning is a very individual thing, based on many complex and diverse factors. In early stage cancers only one or two treatment modalities are typically indicated. This can be any combination of the three basic types of treatment.

There are never simple answers to these types of questions.

The doctors that approved the trismus part of the pages in OCF's main site (and everything gets put past them) believe that tongue blades work, but the TheraBite device works on a curving pressure more like the natural movement of the mandible. This is a minor point in my book, but if your insurance company is going to pay for it why not use it. I have no complaints about my results using the plain old wooden blades from Sav-on.

The issue with doctor's names has nothing to do with any benefits or kudos they might get here. It has to do with liability, and OCF doesn't want to be on the receiving end of any. It easy enough to say my radiation doc or whatever and just leave names out of it all. As soon as someone trashes a doctor by name, or even in the positive leaves a phone number or something here, I hear about it. It is unnecessary and can be kept in the world of PM's and emails for those that wish to exchange that kind of info.

We all know that talking about survival statistics has limitations and it has been discussed here ad nauseum. Everyone is on the edges of the issue with statistical results. Numbers provide some guidelines in decision making both for us and for doctors. I don't want a treatment that has only shown a 1% increase in survival that has horrendous side affects associated with it. That knowledge might affect my decision-making. However the fact that stage 4 patients' fair significantly poorer statistically, is a number that isn't of any value to us. You can't use it for anything except to exacerbate your worry. So there is a place for numbers and there is a place where they don't help. We don't live in a world of absolutes. If it has benefit and the ability to help someone make a decision it's worth mentioning.

You're right Gary, there are no simple answers. I am guilty of preaching the statistic that if we make it 2 years from treatment then that is a landmark and our chance of staying alive are higher. But, I push away and thumb my nose at the stats that say a stage 4 has such low odds of survival at all. Human nature I guess.

Michael, I was under the impression that for most PEGs, you could use either bags or a syringe, depending on the set-up you want. That's the way mine works anyway. The tube has two openings at the end, one that would accomodate a bag set-up and one that accomodates the syringe.

Please don't assume I think doctors are Gods or that their opinions are always right simply because I said I'd trust my gastroenterologists more conservative recommendation about the swimming. All I said was I'd prefer to go with a conservative opinion on that given what might happen if I ignored it, especially when it appears to be based on a couple of actual stories of swimming mishaps with people with PEG tubes. Beieve me, if you'd been around here when I was trying to decide what treatment I needed after surgery you'd be aware that I *hardly* accepted doctors opinions without a question (thnak goodness) nor do I recommend anyone else do that.

Minnie, I hear you about wanting to be sure the non-chemo folks don't get spooked. Since the big studies on the effectiveness of that just came out a little over a year ago, I'd imagine that many people who were treated before then were not even offered the option of concurrent chemo, unless they were part of the clinical trial. In another couple of years it could be some other new treatment that few of us now are being offered such as Erbitux. I think in these cases it *is* very helpful to rememeber that you can't know for sure if you would have even been in the percentage of folks who benefitted from the treatment.

But in terms of the bigger picture, thank goodness there ARE these new and hopeful pieces of research coming out about treatments that clearly increase overall survival. Let's hope there are lots more in the future for all the future people that will be in our shoes, right?

Michael,

I just wanted to add that I'll be sending good wishes your way tommorrow for the first day of your treatment -- hoping it all goes really smoothly. I was very excited about actually getting started with my treatment, as you are too,but I also rememebr nervous about how it would go, especially with the chemo. Once the first day went smoothly, I relaxed a lot more. I hope that you have a very smooth first day of treatment.

I was told early on by both my ent and members of this board that MY stage 4 tumor and surrounding invasion was not good. The ent told me flat out that I would be lucky to live 5 years. After the 17 hour surgery and receiving the pathlogy report it was worst than they imagined. I had poorly diferentely margins, the tumor was invasive into other parts of my mouth and throat and they couldn't get it all due to part of the tumor being on the carthoid arterey. They told me the IMRT would take care of this.

After receiving IMRT for 33 treatments my treatment were over. That was in November of 03.
After having a clear scan 6 months later I still felt it wasjust a matter of time before it would return. 6 months later the scan showed a reoccurrance. I have been on chemo for 14 months
and for a year it held the beast at bay. The last scan in June 05 showed a new tumor in the same area as the original tumor.
I know my days are numbered and I am trying to live each day to the fullest. I believe "Early Detection" would have given me a fighting chance. I really never believed in my heart that I would survive long.
It's been over two years and I still feel fine. I have been lucky to have few to no side effects from al the treatment. I plan on being around misspelling my posts for quite awhile!!!

I wanted you to know the perspective of a stage 4
patiant that understands some make it and some don't. I concider the three years or more I have lived with this has given me the chance to love like I never loved before. I have met more cyber friends that have touched me in a way I didn't
know excisted. There has been alot of positives for me and my family
Thanks to this website and it's members my journey has went much smoother than I can express
in words. I truly love each and everyone I've met through this forum. Nothing can take that away from me!!

Love Ya All, Danny Boy