I agree with these posters. After our conversation on the phone this AM, I was thinking about how many really great cancer institutions there are close to you, and that before you let the VA doctor do something radical, you should have other opinions from doctors of other disciplines than surgery, and from a well-known cancer institution. You also didn't mention in your post the issue that there have been no recent scans to give anyone a feel for how extensive the disease may be. A surgeon being willing to start without scans that were newer than 3 years old feels wrong to me.

While this particular lesion type is slow growing, and has shown itself to be slow to metastasize out of the local area, they can grow to a very large size and destroy immediately surrounding boney tissues quite readily. The can be both benign and malignant. But even benign versions which do not metastasize can be locally very destructive; they also can get quite large if left untreated, causing severe disfiguration when they have been around for a while. Since our conversation I have talked with one doctor about it, and his comment was that surgery is usually the preferred treatment for these. This is considered a very rare disorder, and they are uncertain of even what the cause of these tumors is. I do not think that we have had another person on these message boards with one. The fact that you have been able to live with this for 3 years is because of the very slow growth of these blastomas, but it is not something that can be ignored forever.

Because this is so rare, we have no information about it on the OCF web site, but I recommend that you take a look at the Mayo Clinic site which has very extensive data, from scans for diagnosis to treatments. It is located here http://www.mayoclinic.org/ameloblastoma