I have ameloblastoma, I'm told that it is a rare form of cancer that I have because mines started in the gums instead of the teeth. has any one here had it or knows someone that does. I want to know some questions I should ask the dr's at the Va that will be performing the surgery. They want ot cut my whole mandible out and other dr's say I don't need that. they say well, all you need is the cyber knife zapp and it will never come back. While my Dr. at the VA says we need to treat this agressively

Welcome, Walter. I had a SCC with a partial mandible resection; is that what they are talking about, or are they talking removing the entire mandible?

The two are vastly different. They took about 40% of my jaw, and rebuilt it with titanium and bone from my leg. I have a functional jaw as a result, able to chew almost normally. If they are talking about removing the entire mandible, you may not be as fortunate, since if the hinge joint is affected, it can't be reconstructed. Often the solid jaw is replaced with dense muscle ( from your thigh) and you are limited to liquids for nutrition.

Certainly get more than one opinion, and try to get into a dedicated cancer care facility as opposed to the VA.
Best luck!
Wayne

From what I have read of the ameloblastoma, it does not originate in the squamous cell layer, but from the ectoderm or epithelium tissue, so would be treated differently than the SCCs in here? Walter, please be sure to write EVERY QUESTION you have down on paper and bring it with you for your next doctor appointment. I just don't remember reading in this forum about anyone with ameloblastoma. May your doctors find you don't need quite the aggressive treatment first mentioned. Please stick with us and let us know how they will be helping you.
JaneP

Dear Walter,

I am not an oral cancer patient, but my favorite Aunt is. My Aunt's entire medical file was just brought before a Cyber Knife team and she was rejected because the tumor is in her tongue, floor of her mouth and sub-mandibular gland. They won't use the Cyber Knife on oral cancer patients. The radiation is much too strong and will literally obliterate tissue. There are however, lots of other options in terms of radiation therapy.

Before you make any decisions, please get a second opinion. My husband is a veteran and all of his regular medical needs are taken care of by the VA, but I'd never allow him to accept just what they said if we found out that he had cancer. Find yourself a dedicated cancer center and get yourself a second opinion from doctors who do nothing but treat cancer. Then compare notes between the VA and the more informed resource. Come back here, ask ALL the questions you need to and then make a smart decision between the two. In the meantime, research and read everything you possibly can on your particular form of cancer so you'll be able to understand what the doctors are talking about and you'll be able to actively participate in the discussion and decision process.

Good luck and don't waste time!

Hugs,
Lisa

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