After an agonizing weekend found out that I have mucoepidermoid carcinoma, low grade. The wait for the diagnosis was actually worse than hearing it. The doctor says it's a good news/bad news situation, yes it's cancer but it's minor and doesn't need chemo or radiation, just surgery and prognosis is very good. So next week I go in so the oral surgeon can cut around the site of the tumor and make sure it's "cleaned out completely". Will have to wear some type of retainer thing on my palate for a few weeks until it heals but that doesn't even matter to me at this point considering what some of the alternatives could have been. I am both relieved and optimistic since most of the research had me hoping that if I did have cancer it would be this one. Weird that one would hope for something like that, huh. This site has been a blessing in helping me stay sane for the last few days...I'm grateful to have found it. My thoughts and prayers go out to all of you.

Hi Daisy
Glad that at least you know what you are dealing with, the waiting and the stress gets to everyone I guess, so all my good wishes that the operation goes well and you are soon back here keeping us up to date on your progress,
Cheers Helen

I'm so glad to hear the news Daisy - Of course I wish it wasn't cancer, but it could be worse - It is never easy to hear those words or face this disease but I would have taken this for my mom instead of what she has - You will get through this and hopefully be planning your wedding again real soon - I wish you the very best and please keep us updated on your progress.

Have a great holiday!

Sue

I too am glad that you have found this early, but please insure that you have had a COMPLETE work up including CT's and MRI's with contrast of your entire head and neck area. These things may show nothing, or they may show things that he may not consider in his surgical procedure. I don't wish to spook you, I just want you to be over and done with things this go around, and not be looking at this again a year from now.

I echo Brian's advice. Please be sure to have a complete workup. I am convinced that if Heather had had MRI's done in the beginning instead of just CT scans, her outcome would have been very different.

Rainbows & hugs,
Rosie

I`m going to agree here with Brian and Rosie. I know Frank would not have gone through everything he has if he had had the right tests and treatment from the beginning. We really learned the hard way. We should never have allowed anyone to treat this but the best. We should have gone to a major treatment center 5 years ago. Actually we`re an example of doing everything wrong.....Dee

I am going for the CT scan with IV contrast this afternoon but so far the surgeon has not mentioned an MRI. Since the surgery is on Monday chances of getting one done before then are pretty slim with the holiday this week. If I do not speak to him before Monday I will certainly question him then. Thanks for the suggestions. It's so much to take in all at once that one sometimes forgets to ask important questions of their doctors.

Daisy,

I don't mean to be a pain and I certainly don't want to cause you undue stress, but I do feel it is extremely important to get an MRI before the surgery. Heather's tumor didn't even show up on the CT scan and I have heard from many people that the MRI seems to pick up more stuff. I know you don't want to postpone the surgery, but I would strongly suggest calling the surgeon ASAP and get this resolved before monday. I am convinced Heather's second tumor was not a recurrence, but was present from the beginning. If she had had an MRI and the tumor had been detected, her treatment would have been different and perhaps she would still be alive.

I realize your case is entirely different, but it just makes good sense to know exactly what you are dealing with before starting treatment. Best wishes.

Rainbows & hugs,
Rosie

Hi Daisy
I just wanted to let you know that I wear a mouth plate and have since I had surgery in Aug. My surgery was done by a head and neck oncology surgeon. The plate that was made by my prosthodontist was such a help. Because of it I didn't have to get a feeding tube and it protected the area.
I was lucky and found a Mom on the site whose son had a similar surgery 5 weeks before me. She answered so many of my questions. If I can answer any for you please ask.
Good luck
Cathy

Hi all,
I have mucoepidermoid carcinoma, low grade, in the buccal region (sandwiched between the upper and low jaw pivotal point). The first doctor (who eventually became my surgeon) prescribed midface degloving or face dissection (Weberferguson cut) to access the tumour (3cm diameter lump).

Initially I was horrified with the risk of disfigurement. I know I should be more concerned about cure than appearance but I have just ended a contractual job to undergo medical treatment so appearance is very important for me to secure the next job. So I visited a total of 6 doctors for alternatives. 3 doctors advised the face cut. 3 doctors says there's a chance of intra-oral removal of the tumour without cutting up the face. I see now that many of the members here went for the more aggressive approach with bone removal and use of obturators. Now, I fear if I have made the wrong choice of going for the less aggressive approach.

My tumour has been removed and my surgeon says the margins are clear. I am going for post-operation review tomorrow. My mouth can hardly open wide enough for a spoon to enter without at least 5 minutes of stretching.

I'm worried now that a simple case might be complicated for my fear of disfigurement. I'm keeping my fingers crossed. Tomorrow is my judgement day....
huihien