 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Yes, your cancer is a very rare one. We have had a few members who have had this over the years. You may or may not find many others with the exact same diagnosis but we can help you with info and support to get you thru the rough times. We do understand what you are going thru, we have been there ourselves and know all too well how difficult it is when you arent sure which way to turn.
Best thing to do right now is eat all your favorite foods. The location of your tumor makes treatments that are focused in your mouth areas so its likely your eating and drinking will be affected, hopefully only for a short time.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | 
