Dec 27, 2013 - 1:17 am
My 10 year old son was recently diagnosed with Mucoepidermoid carcinoma in the parotid gland. The cancer was found when he underwent surgery for the removal of a branchial cleft cyst, which turned out to be a tumor. We feel as though we are straddling two worlds here with treatment options. This is an adult cancer in a child. Pediatric oncologists at the University of Michigan have not treated this cancer in a child. Adult oncologists see the cancer on a regular basis, yet don't treat children.
We are trying to research as many treatment options as possible. Trying to decide if it is important to go to a facility that has treated a child with this cancer as even major cancers centers appear to treat only 1 case per year. Or is it better to pick a treatment center near home to keep life as normal as possible. Does treating one case per year give them an advantage? My son is a triplet and we also have a 15 year old at home. We will of course go anywhere we need to get the best care possible. We are currently at Mott Children's hospital at the University of Michigan for treatment. After the first surgery (partial parotidectomy) we were told they found cancer in the localized nodes and that he would need a complete parotidectomy and removal of all local nodes. We have been told it is high grade, stage 3. We are awaiting recommendations from the tumor board in treatment protocol. We were initially told they don't like to radiate kids under 16 if they don't have to because of the side effects. Now it looks like we will need to radiate due to grade and stage.
Anyone here with a Mucoepidermoid diagnosis in a young child? Did they do radiation? What cancer center did the child receive treatment from? Name of treating Dr? Anyone use proton therapy? Which center? Please, any help you can give us would be appreciated! We are trying to get up to speed as quickly as possible, but it is do hard to find good info on this cancer in a child. Hoping someone here can help!