Jamie - are you having much luck with MD Anderson? I am being followed in the Head and Neck Center, and up to this point have never seen any OCF brochures, etc unless I've brought them myself. The Head and Neck Center is where ALL oral cancer patients are seen and followed, so it's an obvious place to make sure they are informed. I have also repeatedly informed my surgeon, oncologist, fellows, nurses etc about OCF.

I am going this Tuesday for my 4 year follow up, let me know if there's anything I can do. Hopefully you've been able to reach them.

Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!