My 10 year old daughter was diagnosed last july with a Acinic Cell Carcinom in the salivary gland. She went into surgery and they removed the gland and 14 lymphs. They found no cancer cells in those lymphs. Now, exactly 1 year later why doing a check up MRT they found multiple suspicios lymphs. We will be doing a PET on friday. It so seems that here in Frankfurt noone knows exactly what the Acinic Cell Carcinom does and mostly say that it doesn't spread, i read very much on this and i know it is not exactly true what they tell me. Can anyone help with advice or simular case experiance. This cancer is so rare that no real tests were done and most Doctors just tell me that they have no clue. That is a little bit too dangerous for me, since my daughter is concerned. Please anyone respond that has information on this subject. Thank you very much.

HI,

I FOUND SOME INFORMATION FOR YOU...I WAS LOOKING FOR PREVIOUS POSTS ABOUT MY PAPILLOMA AND I SAW SOMETHING ABOUT ACC AND I COPIED THE LINK FOR YOU...WELL THERE ARE 2 LINKS...I HOPE THEY HELP!

http://rdoc.org.uk/eve/forums/a/tpc/f/55510549/m/441102706

http://survivor-support.rare-cancer.org/forum/

WISHING YOU ALL THE BEST,
JO

Hello Worried mom. My heart goes out to you having a precious daughter with ACC. My cancer is also Acinic cell and my consultant tells me this is a very rare type of cancer and very unpredictable. I too started with a blocked salivary gland which turned cancerous after two operations to remove the stones. I was told by the doctor at that time that it was a very slow growing type of cancer and not to worry too much about it.............! Within weeks it had spread through my jaw bone. I had major surgery (if you wish, you can read my account on the story board on the home page). I recovered well, but the cancer returned 16 month's later and I had a repeat operation last month. Apparently this type of cell travels along nerves, as a result I have had many nerves removed in my tongue and lip. God willing, they have removed the cancer altogether.

My daughter uses a website which is devoted to ACC. She is anxious to find out what might help me although I prefer to use this website. I can't remember the web address but if you put Acinic Cell into Google you will find it that way. If I can find the exact address I will get back to you. Sorry to be so vague. Please let us know how your daughter gets along. We all wish her and youself every good wish for her complete recovery. Kind regards Brenda x