OCF on represents small number of oral cancer patients as most do not find us. We could use a Google maps to let people post their location on it, but drawing from what people have put in their profiles would not work. The say things like USA, or a state, or nothing at all. We never used to even require it as a registration feature, and even since doing so there is no way a making them put in a city and state. The national cancer registry, the SEER numbers all speak to how this disease is not rare. But you have brought up an interesting idea. It might be interesting to see where those who come here all are. They would have to join the map on their own though.

I do this on another aviation message board that I post to regularly. It doesn't serve any real function, but it is interesting to see where people who like to fly off the grid - landing in riverbeds and fields are at.... I'll talk to Chester about your idea.

Sounds good Brian, I think you're on to something!

I often wonder where exaclty people live too. It would be nice to see the areas we live in.

Yes, that kind of data would be interesting. I have ran in to several folks through this board from the Midwest/Ohio. I linked on to PBS and the show currently isn't airing, at least in this area. Maybe this weekend I will link through the web site and view the links. I sure agree with Brian's comments about looking over your shoulder with every little ache or pain. Like everyone else here, learning to adapt and go on continues to become more bearable although it's always there, tapping your shoulder.
LiveLong, LiveStrong--Steve

Since we are starting state chapters the geographic data would be very helpful. Is the data from SEER broken down by region,state, treatment location, patient residence?? It would be interesting to compare our informal forum data with the hard data from SEER.
Is it possible to canvass all past participants on the forums via email? We could get the geographic data and inform them of the formation of state chapters and request participation.

On numbers and the need for education, prevention and adequate insurance:

The nurse for the ENT Oncologist I go to at Tulane University Hospital worked on the ENT unit at Charity Hospital before Hurricane Katrina destroyed it. She told me that patients came in "smelling of death." Although uninsured and indigent patients are treated at the local facilities on an emergency basis, there are not enough ENT beds for patients without insurance and unable to pay. She has had trouble getting these patients into the public hospital in Baton Rouge an hour away from here and sometimes cannot even have her calls there returned.

Much of the health care of even the middleclass here as elsewhere is on an emergency basis because many families cannot afford health insurance and many employers offer only minimum plans which do not cover catastrophic illness such as cancer.
This is not only a problem for the financially strapped. My husband went without insurance for 2 years from age 60 to 62 until he was eligilbe for retirement because our small business insurance covering only the two of us was about $1250 a month. He could not find a more reasonable rate because he is diabetic. We took a gamble reasoning that I was healthy and if anything happened to either of us we could pay out of pocket and make payment arraingements if neccessary.

The need for awareness, screening and suppoprts extends across all of these populations.

Malka

The SEER database has lots of information in it, but you have to remember that the information is much like the Nielsen TV ratings.There isn't a monitor on every TV in the US. There are only 13 SEER collection points, not the entire US. Some cosmopolitan, some rural. It would be financially and logistically impossible in our country today to monitor everything. So it is a good database for projecting things, making assumptions about what is happening in the US through extrapolation of the gathered information, but it is not as finite as looking at every city in every state. The SEER numbers can be accessed by anyone, and you can do you own searches of them with a little practice. Someone emailed me with the obvious question to those not familiar with cancer or disease statistics in the US, and that is what does SEER mean.

Surveillance, epidemiology, and end results.

We have the ability to send an email to everyone that ever provided one to OCF in the past. But I would guess that about a third of them would come back as non deliverable as people change their address, and others would just not be answered as people after being helped, sometimes never come back, as even the discussion of cancer raises fears in them. One person who I think is at high risk for recurrence because of the treatments the had, (or didn't have) does not even go back for scans and exams. They say that it isn't part of their life anymore....

While your post about the insurance and medical system reflects my own opinions, I think that everyone, even the politicians agrees that the medical system in the US is broken. I am not optomistic that anyone is capable of fixing it.