Hello All!

May I introduce myself as Vijay as online member here. I've been looking for an Online support forum like this for quite awhile and very pleased to hit this site through Google. The reason obviously is that the online forum like this is a great platform to exchange and share each other's common experiences and problems and support each other. I'm not different from all beneficiaries of this forum. As such, I'm joining you guys with same anticipation as you all have to share beneficial information with other members who share same experience as I have and that is: Adenoid Cystic Carcinoma. In January this year I've been diagnosed with AdCC. and my Oncologist recommended surgery and subsequent radiation as the best treatment but I've been unable to make decision so far because my doctor has not ruled out the possibility of facial nerve damage. Hence, I will be posting questions and comments based on my experience and I request your suggestions and insights from you. I'm looking forward to see your beneficial messages.

Thank you

Welcome to OCF, Vijay! Im sorry you have a need to join our group!!!

As a group of oral cancer (OC) patients and caregivers we will do our best to help, however we do NOT have medical backgrounds and your condition is something we rarely see discussed here so its doubtful we can answer your questions. Im not familiar with your illness, and Ive read every single post created for the past 13 or so years. Since I do not have a medical degree, theres too many things I wouldnt have any info about and would need to rely on searching the internet just as you have done. When I did a search of our forum's posts, we only had 3 posts that mentioned ACC... thats 3 posts out of almost 200,000!

The Oral Cancer Foundation is dedicated to helping patients and caregivers learn and support each other thru whatever path OC has them on. We are a very small nonprofit organization with a world-wide presence. Since OC is such a rare disease with around 53,000 new cases diagnosed per year (in the US), we tend to be a tight knit group. If we're talking about a different disease, Adenoid Cystic Carcinoma like you have, thats significantly less common with only about 1200 in the US getting diagnosed per year, which is significantly less than OC!
about with your ACC. In your Google search you probably found us from our site bringing up the page in the link below. Its not much info but Im afraid its about all we have on ACC. Best wishes to you with everything.

ACC on forum


PS... In the US when a patient is unsure what course of treatment they should have, they will seek out another doctor at a different facility to give them a second opinion.