Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Damien, Im very sorry to read the update about Katie! I was hoping that no posts meant things were getting better. Im so sorry to hear thats not the case.
Try your best to think clearly and not fall into believing false claims. The only scientifically proven ways to eliminate oral cancer are radiation with our without chemo and surgery. Chemo alone may shrink the tumors making surgery a later option.
You are already doing the best thing by seeking out the countrys top cancer centers and doctors. I can suggest maybe trying to go to another CCC for a second or even 3rd opinion. Dont give up. I also didnt have very a good chance of survival with my third round of OC and I almost quit and didnt seek treatment. But because of Brian and the members of OCF, they encouraged me to try. They kept telling me I couldnt quit unless I gave it a shot. I was left disfigured and have life long eating issues but Im alive and live a very good life. Being disfigured isnt optimal and has its challenges but its not the worst thing in the world. I know its a huge surgery Katie would go thru and it may not work (mine was similar and I had complications) but its worth a shot if it will save her. I have a very different view point on this than others as Ive lived it and without the surgery I wouldnt be here now. At least get another opinion and then make your decisions. We will support you both no matter what path this takes you. Best wishes!!!
PS....It was great to meet you both at Susans walk in September. If there is anything I can do, dont hesitate to ask and I will help you as much as I can. Please give Katie a hug from me and hang in there.
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 |