I am a new member, but an 8 year survivor of mucoepidermoid carcinoma. I did not get many questions answered back when I first had my surgery and to be honest, I tried to ignore the possibility of recurrence. Now I am ready to take my head out of the sand and get some real answers. I have never smoked or drank, so that rules out those normal risk factors. I was however until the age of 18 raised in a very tobacco smoke filled house. I would like to know what other risk factors could have caused this? What is the occurrence rate here in the US? Obviously I am past the major risk of recurrence if I've made it thus far, but what are the actual recurrence statistics? I now have a benign neuroma where the sensing nerve to my lower jaw and tongue was severed to remove the tumor. I am experiencing more pain from that area, but my doctor is quite sure there is no recurrence at that site. What, other than a physical exam by my surgeon should I be watching for? There has been no scan done in over 5 years. Since I am highly allergic to some contrast dyes, I have not pushed for another scan. Should I?

I appreciate any info you can give me, and I hope my survival is encouragement to someone.

Shannon

Maybe a second opinion is in order? Knowing what we know I wouldn't wait. Sure hope it's nothing, but if it is something, you'd want to know sooner than later.

I was just diagnosed with mucoepidermoid carcinoma in March. I had my surgery and they got all of the cancer. I am in the same boat as you. It is hard to find anyone with this type of cancer. I have tried to research on but there just isnt any info out there on our type of cancer. To hear that you are an 8 year survivor is very encouraging to me. I am so afraid that it will come back.

Shannon, what is mucoepidermoid carcinoma and where do most people get it? I have never heard of it.
It's nice to hear you are an 8 year survivor. Hoping you follow up for your peace of mind.

Best Wishes, Danny Boy

All I know about Mucoepidermoid carcinoma is that it is a rare cancer usually starting in the salivary glands. What I was told was that approximately only 3000 cases are diagnosed in the US annually. The risk factors are usually smoking and heavy drinking. Neither of which I have participated in. More recently they are questioning that excess radiation may be a causitive factor. The most serious form is high grade. My surgeon told me that this form of cancer is considered "aggressive" because it does not stay in just one type of tissue. It invades whatever tissue it touches. Mine included the nerve tissue, bone (jaw), and even two teeth. He told me that the only successful treatment was surgery to clear margins since there was no satifactory results with chemo or radiation at the time of my surgery. I don't know if there have been recent revision of treatment. I was told that that this cancer can also be in the lungs, larynx, or the orbit of the eye, but that is even more rare than in the mouth. I am most interested to know more. I also fear the possibility of return, but each year the fear fades a little more as the percentage of recurrence diminishes. It is very frustrating not to be able to find out more.

Mellay, I was wondering if you have difficulty with speech and swallowing? My most difficult thing post surgery was learning to sense where my tongue was to swallow, speak, chew, etc. since I no longer have my sensing nerve to one half of my tongue. The other was severe muscle spasms that clamp down my jaw really hard, often before I have the chance to get my tongue out of the way. I hope your recovery is speedy with minimal disruption.

Shannon

I have also been diagnosed with mucoepidermoid carcinoma, low grade. I have the tumour removed 1 week ago. The wound is healing and I am on tube feeding with a Freka-tube through my nostril to my stomach. I know very little about my illness as well. The histopathology report of the extracted tumour is still pending. I can't open my mouth wide now and can't brush my teeth. I get muscle aches from opening my mouth. But my dentist said that I should practise opening my mouth or the wound will heal and cause my mouth to be restricted in opening wide.

I don't smoke but is a social drinker and so don't drink very much. I was a chemist and handled lots of chemicals including carcinogenic chemicals. My dentist also mentioned that a recent research has proven links between cancer with oral sex.

Hello. I am new to this site. In January, I had surgery to remove a parotid gland tumor, which was diagnosed to be adenoid cystic carcinoma, stage 2. Last week, I began IMRT therapy, which will continue everyday for 4 more weeks. Side effects of dry mouth, scratchy throat and fatigue have started. I just found out that my thyroid is also receiving some radiation and I'm concerned about thyroid dysfunction down the road. Would appreciate any info you have on this. Thank you.

oops, I'm sorry. I think that I accidentally interrupted your conversation and am on the wrong page. I'll keep trying.

Healing1,
The trick here is to go to the "symptoms and diagnosis" topic, scroll down and click on "new thread" button on the tool bar on the very bottom left of your screen(you can also click on "new topic" button on the top of the screen as well with the same results). You will then start a thread of your own and it will facilitate getting repsonses for your particular question.

I had IMRT and typically they try to avoid irradiating the thyroid. It took 2 years for my thyroid levels to get to the original levels. They will test yout TSH levels every 6 months and, if need be, will prescribe meds if it goes too high. Not a big deal in the scheme of things.

I am not having any trouble speaking or swallowing but I do have problems chewing. I have no feeling or taste on the right side of my mouth (That is where the surgery was). Every once in a while I realize that I have bit my tounge and did not feel it. Other than that, I am doing good.

My doctors also said that for low or intermediate grade mucoepidermoid carcinoma chemo and radiation are not indicated. They use radiation for high grade. Everthing that I have been told and read on my own says that it is not caused by smoking or drinking. The only link that has been found is radiation. (I have never had any kind of radiation) I guess it just happens sometimes.

I just had my second follow up appointment and everything looks good. My doctor is going to monitor me every 6-8 weeks for the first year and then slowly work to once a year.