My husband is 32 yrs. and was diagnosed 11/05/09 with Mucoepidermoid Carcinoma. At first he was told he would need a hemi maxillectomy & radiation. Then we found an ENT cancer surgeon who felt he could just core out the tumor - unless more cancer was found during the surgery.
On 12/21/09, my husband had a partial maxillectomy. The pathology report came back saying there was no cancer found in the bone, but it was found in the nerves.
Our surgeon said that even though radiation to the mouth and neck was recommended by the board, he would not have it done if he were in my husbands shoes.
My husband's next MRI will be the 2cd week of March. Since he has recovered from surgery, he has started eating a raw diet and taking supplements. He is concerned about a recurrence of cancer, but the side effects of radiation scared him more. He is adjusting to life with his obturater, and all the ways his speech and ability to eat have changed.
I know this is just my introduction post, but I do hope some of you could offer advice and what you did to treat MEC. Thanks & God bless!

Welcome to OCF, where I'm sorry that you and your family have to go through this ordeal, you have found the right place for support.

Your husbands cancer is a rare type, however there are a few others on these boards with MEC.

Here is a link to the OCF MEC page: http://oralcancerfoundation.org/facts/rare/mc/index.htm

Please read to become more informed on what you are facing. There seems to be no easy answer to your question so I'll offer some sound advice.

Make sure you are getting the best medical advice out there. Get a second or third opinion from a reputable facility. Personally I went for a nationally ranked facility for my tumor board and surgeon and I believe it saved my life.

Don't make decisions based on the side effects you may have from the treatment, underestimating cancer usually ends in death. So some may bring up "quality of life" which to me means nothing if you're dead. Make sure to take the steps needed to kill this shit before it kills your husband.

Use this board as much as you need for support...best wishes to you.

Eric

I would contact a CCC and get another opinion:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I had three opinions before chosing my treatment. Two came from nationaly recognized CCC's

Kelly

While you're waiting for responses from people who have dealt specifically with MEC, you can reach out to them by searching message-board posts for mucoepidermoid, using the search box in the upper right corner of each forum page. There are six pages of posts (130 results) with that word. Clicking on the poster's name will give you his or her profile, including e-mail address, along with an option to send a Private Message, which the poster will see the next time he or she logs in.

So sorry you had to join us, but you have come to a great place for support. I do notknow much about MEC, but some others on here do and are a good source of information. I would also encourage you to get a second opinion in regards to treatment.

As you can tell from my signature line, I am one of the few that was diagnosed with mucoepidermoid carcinoma, had a maxillectomy, and now am learning to adjust to the obturator. I went to a cancer center, Brown Cancer Center in Louisville, KY. I had a great team and the decision regarding radiation was determined by the grade of cancer, which was determined from the final pathology report after surgery. The report stated that it was a HIGH GRADE and close to the margins. Although they felt that they had gotten it all, radiation was no longer an option. Yes, radiation was not a walk in the park, but they were able to adjust the field as needed to reduce as much adverse effects as possible. Has the Dr. indicated the "grade"? I will be happy to answer any questions that I can, there are two others on the forum that I was able to communicate with while I was fumbling my way through this.

welcome to the OCF! U should be able to find plenty of info on MEC from the older posts. keep us update. my best goes out to u.

Welcome to OCF and our family. Youhave been given good advice and should go for it. I had 3 opinions from different Hospitals too but should have listened to the 1st Dr and started off with Rads and chemo. Get those opinions and weigh them against each other.