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| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Vijay!
I just replied to your first post about how rare your ACC is. Unfortunately, our site deals primarily with oral cancer which is what almost all of our members have, not ACC. In a search of our approximately 200,000 forum posts to find more info about ACC, only 3 posts came up. Im very sorry but its highly unlikely anyone here would be able to answer your questions as we are not familiar with your illness. At OCF we take great pride in only providing correct and up to date medical info on our site. When asking questions about an illness we do not have any members posting about, we wouldnt be able to provide any guidance to you or anyone else on this topic.
One thing Ive learned in over the 13+ years Ive dealt with OC is its always best to ask the medical team clarifying questions when at your appointments if you dont understand something. This is especially important when its regarding such a rare disease where online info is scarce! If unsure of your medical teams skill then try seeking a second opinion from another qualified doctor at a different facility is what we do in the US.
Im very sorry we are not able to assist you!!! Best wishes with everything.
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  | | |
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