Just diagnosed with mucoepidermoid on the upper left palate

Skiffin16 said:

Head
LOL, I've been called a pain in the azz before, but never a pain in the head, LOL....

JG

ekdennie said:

MEC of the hard palate
ajerger,

I hope I can offer you some help. I was diagnosed with Mucoepidermoid Carcinoma (MEC) last year (june 30) by an oral surgeon. my tumor had been there for at least 5 1/2 years, but I had been told not to worry about it, that it was a boney growth...my dentist was wrong. they wouldn't tell me a stage for it at first, beyond that it was Low Grade. with MEC it is important to know not just what stage it is, but what grade. the grade is the most important piece to determine your treatment course. as it turns out they had thought I had a stage IV, low grade MEC, but after the surgical removal of almost a golf ball sized piece of tumor, plus margin tissue, it was determined that I had a stage II, intermediate grade tumor. if it had been low grade then I would not have needed radiation, but once it was found to be intermediate grade then radiation is the best course of treatment to help decrease the likelihood of a recurrence.

as for surgery, you have two options, you can have an oral surgeon do the surgery, or you can have an ENT, but I know that I am very grateful that I had an amazing ENT perform my surgery (my tumor had grown into my sinuses). my surgery was technically outpatient...if you are at the hospital for less than 24 hours it is outpatient...I was there for just about 23 hours. the degree of discomfort post surgery will depend on how deep the tumor has grown and on its size. it is considered less painful if they remove a portion of the hard palate (bone) as well as the soft tissue, as they are removing the nerves as well. I was given liquid medications and a temporary mouthpiece as I had a large hole on the roof of my mouth, this allowed me to breathe, drink, and sound pretty normal, until I lost some blood clots, then I sounded funny and was later fitted with a different mouthpiece, which I am wearing now. not everyone will need a mouthpiece, in many cases they can close the hole back up. it is important to ask if reconstruction will be possible and necessary. it was not possible in my case. just like when you had the biopsy done, your mouth will be sore, you will want to eat soft foods at a temperature that feels comfortable to you. I ate a lot of macaroni and cheese and jello. my recovery was rough, but that was mostly due to the size of my tumor and through blood loss.
as for the fluid in your ear, you will need to ask the ENT, i know it is possible, but they will be able to help you more.
for right now, just focus on the surgery and the recovery from it. it is important that you exercise as much as possible now before the surgery so that your body is as strong as possible. I walked every day in the weeks leading up to my surgery. I also had my regular dr check to make sure I wasn't anemic...that would delay your surgery. on a positive side, MEC is a very slow growing tumor unless it is High Grade, so you won't have to worry about it.

some basic info about MEC. three grades of tumor, low, intermediate, and high grade. recommended treatment options for each grade is (based on what I found last year), low grade= surgery with clear margins, surgery +radiation if clear margins are not possible; intermediate= surgery +radiation regardless of clear margins; high grade= surgery +radiation and/or chemo.
If you have a low grade tumor that is successfully removed with clear margins you can be considered cured. all other types you won't be considered cured for 5 years, but with no evidence of disease (NED) or no evidence of regrowth.
as for stages, prognosis is usually great for those with stage I, II, or III tumors.
MEC can occur in anyone at any time at any age. there are no known risk factors for it.
It is also important to ask your doctor after you have had it removed what variety of MEC you had. MEC's are composed of many cell types. mine was clear cell variety (clear cell responds very well to radiation).

message me after your surgery if your doctor(s) determine if you need radiation and I will let you know what it was like for me. I will be praying that you won't need it. it wasn't easy, but it was doable.

on a positive note: my recovery from surgery was about 6-8 weeks. my radiation treatments were over in the middle of November last year, I was very worn out for about 6 weeks post treatment, and I have been doing great since. no sign of recurrence. I have 4 more years to go before I will be considered "cured". I will still have to see my ENT for life after my four more years are up, just at less frequent intervals as time goes on. I had a 4 month old at the time of my diagnosis...I was breastfeeding him. I continued to do so throughout all of my treatments, adjusting medication to ones that would be okay for him as well. 3 months post radiation I discovered I was pregnant with my fourth child. this child will be born in a couple of months.

as with any diagnosis of cancer, each patient will have a different story. there will be rough times, there will be times when you just want to scream, but I feel strongly that there is a core of strength inside of each and everyone of us, that we don't even know we have. a positive attitude really makes a difference, as does having faith in your doctor(s). I am not on here very often right now as I am trying to spend more time with my kids...last year was rough on them, my oldest is not yet 6, but I will try to answer any questions you may have, and you can always read any of my old posts.

Sending you HUGE HUGS!

elizabeth