Have you?
1) used teeth whiteners/bleaches
2)used mouthwashes regularly
3)used weight loss enhancers, eg. hydroxy
4)had immune problems?
5)epstein barr? or mono?
6)cold sores often?
7)had a benign sore in the past?
8) ate completely healthy, avoiding fats, sweets?
9)exercised regularly? staying lean?
10) ate hot/spicy foods often, more than 3 times a week?
11) what toothpaste do you/did you use?
12)took vitamins? or dietary supplements?
13)anxiety?
14)phobias?
15)smoked in High School/College with a few drinks?
16)worked in a smoke filled room?
17)history of herpes? oral/genital?
18)never ate vegetables/lettuce?
19)immediate family cancer at a young age?
20)tongue chewer, cheek chewer?
21)constipation?
Hopefully, this will passed on and can be answered and then sent on to a study program. My young daughter, 31, died of tongue cancer w/ virtually no risk factors. I hope you can help us with this study. Thanks so much.
Linda/ Christa(Jordan's Mom)

I'd like to know who decided on these questions, what you intend to do with the answers, how you intend to archive them, and the identities of the people that you find attached to them. I know you have the best of intentions, but if we are going to do a survey on these boards it will have to be done WITH THE COOPERATION OF OCF, AND WITH PROPER CONTROLS IN PLACE. Please contact me about how we can do this so that it has scientific merit, controls and patient privacy protections. Without doing this correctly in a manner that does not introduce bias into it, or in which we know what the bias is, the survey results are not useful to anyone.

Linda has a worthwhile idea here. But please, let's set this up correctly so any results are of true use to a researcher. Please hold off answering until she and I have an opportunity to set this up properly.

These boards are not for the arbitrary collection of information. Not by individuals, researchers, or private companies. We guard them carefully. We have the ability to contact many families patients and survivors. We can do something worthwhile, but no one is allowed to just post surveys without OCF's permission, and controls on how that information will be used. Obviously I am sure that Linda had no malice or ill intent, but rules here are the rules.

Brian, I just posted a long apology, but the post was deleted. Sorry! I am embarrassed and humiliated. I never meant any ill intent or malice here.
Perhaps you can find a way to ask about these simple things, not 'big' risk factors here. Just common similarities that may some how pull something out to help, especially these young people. This was not meant to be a research project. There has been some curiosity regarding some of these among posters, etc. I only posted tonight after the other post re: causitives, which we DO NOT know. It may help knowing some commanalities. I never realized it would be a 'problem' or certainly would have asked permission, or discussed w/ you.

Apologies are not necessary. I just want you to get his right so the information is useful to a researcher that wants to look at any trend that you pick up. I think the idea is valuable, and we SHOULD do this. We should just think it through, and we have some researchers on here that can help us eliminate bias and have a worthwhile piece of data when done. No apologies!!!!

That would be great! Maybe, we can find something that is common, with especially these young people. In my lil' place in this world I know 6, yes 6 young people who have died with oral cancer with no BIG risk factors. Some of the questions are regarding my daughter's history, with some being others history. It is in your hands. If I can be of assistance please contact me, otherwise, it does seem like a worthwhile topic that may find something 'simple' in common....SOMEBODY must try to find something that could possibly affect this. I'm sure in 10 years, something will be acknowledged to be a simple causitive. Wouldn't it be just tremendous if our group here had a part in it. This site reaches so many.....I am sure Miss Kate and several others would love to be involved. Let me know if I can help or any of the others interested in this topic. You are the greatest! I'm sure you will do this in the correct way that will be easy and helpful.

Linda-

Hi! I think these are all fantastic questions. I am of course a willing participant in any research study that goes forward. I would answer yes to several of those ?s.

Thinking of you lots Mamma Jones.

LOVE,

Kate

But I would answer no to most of those.

I'm with you 100% on trying to find some commonality that may link us all together but after posting on this site and talking to the experts like Brian and my doctors for over 2 years, I am resolved to leave the studies to the study experts. Even if you got 20 responses and all 20 were 100% exactly the same, what would that tell you, that 20 people out of a half of million all did those things you asked and all had OC? So what would that mean? Unfortunately just that. Organizations that conduct studies do so to exact established guidelines eliminating as many variables as possible while trying to reach one succinct conclusion. It's frustrating but necessary to achieve the desired confidence level in their conclusion.

I agree with misskate. Those are great questions and I think with help organizing these questions, would benefit a lot of us. Go for it with Brain. This could be interesting to a lot of people. Never even thought about the connection that is possible to OC. Thanks for posting it.

Since I didn�t fit the typical profile of an OC patient, I�ve wondered what could have been the cause in me. Many of my doctors said possibly an irritant, but nothing they could identify. Many of the items on the list were also on my list of potential causes. In the two years prior to my diagnosis, three of my immediate neighbors also developed cancer � one neighbor had breast cancer, and the young couple next door had lymphoma (husband) and lung (wife who never smoked). Fortunately we are all doing well now, but I keep wondering if there was something in the environment. Yes, and to have 6 young people died of the same, relatively rare disease, in the same area seems more than coincidental.

Linda, my deepest sympathy on the loss of your beloved daughter.

I, also, wonder how many OC patients have ever had questioning re: some rather 'benign' activities/history, such as some of the lil' day to day stuff. Christa was seen at 3 Major Centers and never was anything asked like these questions. Only the 'biggies': family history, known environmental dangers...etc. Just simple curiosity that could turn out to be a help in the fight. Certainly, nothing earth shattering. BUT, David, if 20 people had 80% of them the same, who is to say 750,000 may not have 80% of them? Prolly, seems like looking for a needle in a haystack, right? Someone needs to start somewhere. It would be very interesting to know what kind of questions were asked of oral cancer patients? And, since there is such a rapid rise in young people with no risk factors, what MAY be similar to them and their habits/history.
I, certainly, am no expert, not techi in research.....only a concerned friend of Oral Cancer Patients. Glad to see other interest posted here. Also, thanks for other interest shared. It does seem worthwhile....???
Maybe, just not the right way to begin. But, Maybe, Brian and his crew can put something together. What would it prove? possibly Nothing! BUT, possibly some lil' thing.....
Susan, thanks, and the 6 young people were not in immediate area. My daughter and another in her city, 2 in Chicagoland, and a friend of Kates in California and one in Indiana. That is just that I know of.......all within the past year, in their early 30's, with rapid disease, no 'typical' risk factors. That is too many!!!! Take care all, thanks for sharing.