Low Grade Mucoepidermoid Carcinoma

debbiejeanne said:

hi, jason, welcome to the

hi, jason, welcome to the only club where we hate to see new members.  my cancer was different so can't advise but wanted to say I'm sorry you're in this situation and  I just wanted to welcome you.  i'm sure others will chime in and give you some info.  again welcome to our family.

God bless you,

dj

Thanks dj, much appreciated!

KTeacher said:

Search archived articles

Search by keyword box at top of topic page, you will be able to get specific info on your cancer.  I remember that we have had others with this diagnosis but some are not active on the site anymore.  Sinus problems have been constant for me.  Check with your medical team and find out if you can use nasal rinse.  I add Alkalol (over the counter) to my saline solution, it has been very helpful with sinus congestion.  If you will be having radiation and or chemo I suggest that you read the Superthread at the top of the topic page.  Tons of information for treatment and post.  Stay in touch, we are here to help you get through this.

Hi Kteacher, yea my nose are both constantly heavily congested. Ive tried saline drops, antihistamine and blowing my nose 100times a day but the congestion always come back after a while. Makes it hard to sleep at night.

tommyodavey said:

MEC

Hi Jas,

 

Yes, the cancer you had is a fairly rare one.  I was diagnosed with base of tongue Mucoepidermoid Carcinoma.  Had a 2.5 X 3.5 cm tumor down my throat.  My surgeon told me that he couldn't even find a similar case like mine so he treated it like most low grade MEC cases.  Remove the tumor and any other places it might have spread to and then radiate.  Our kind of cancer doesn't respond to chemo, so thank your lucky stars for that.

 

Most patients who have MEC have it where you had yours.  Like what was posted up top, so a search with MEC as the key words and you'll find plenty here througout the years.  I don't know if I was lucky or not to have it on my tongue.  It hurt like all get out when he took part of my tongue out.  Lucky for me it was also low grade with clear margins.  They called it stage 3 because it had spread to my right neck lymph nodes so I needed a radical neck dissection.  My guess is they caught yours early and you won't need that surgery.

 

The flap will work if all goes well, or they can make a prosthtetic.  See what your doctor says.  Did you already have your teeth checked?  Normally, they send you to an Oral Surgeon to remove any teeth that are not perfect.  That is done because of the radiation.  It's better to heal before they radiate because your jaw will take longer to heal later.  Depending on the pathology of your removed cancer, you may not even need radiation.  I hope not.  Let me know what they say about further treatment options, okay?

 

Anyway, welcome here and you landed in the right forum for your cancer.  The information here and the people are so awesome.  I receieve a lot of support from everyone here and for that I am grateful.

 

BTW, I am two years out of treatment.  You can check my profile for more info.

 

Tom 

Hi  tommyodavey, thanks for the insight. from what i was told the cancer didnt spread to the bone but was pressing hard on it. So i think they had to remove part of it. Im still not sure abour the clear margin part, ill have to ask him tomorroW. i also had 4 teeths from my upper jaw removed, not sure if it has to do with the flap or the tumour. But the flap, i guess is still swollen so it makes it harder to eat. I have been living on soft and liquid food and have lost 5kg since the surgery, 25.6.2014. But thanks for the help, really appreciate it!

CivilMatt said:

welcome

Jason,

Welcome to the club, sorry for the reason.

Good luck with your battle.

Matt

hi civilmatt, thanks for the encouragement and support, very much appreciated!

Mikemetz said:

BOT MEC

I was diagnosed with MEC, grade 3+ at the base of my tongue, left side in 2009.  Mine was also rare at that time, so the decision was made to treat it the same as SCC in that location.  I did chemo + rads--no surgery.  The treatments worked very well and I am NED for 5+ years now.  I lost a lot of wieght during the treatments and until I could eat orally again.  Don't worry about the weight loss right now--try to get the nutrients your body needs to help with your recovery, and stay hydrated.  This is a long-haul deal, so stay focused on one step at a time--the step you are at in any given time.  If you get each step right along the way, the future steps will be easier to cope with.

mike

 

Hi Mike, thanks for the input. From what i have been told, i would not require any additional therapy other than surgery but that is not confirmed because the pathological report is not out yet. So fingers crossed! Ive lost about 5kg since the surgery, June 25th. But past few days i managed softer foods rather than just liquid food, so hopefully that would help and i am also on the feeding drinks (fortisip). You are right especially since everything has been developing so rapidly. Thanks for the encouragement!

TracyLynn72 said:

MEC here too!

I am one year cancer free after having 2 surgeries to remove a 4cm, stage 2 MEC of the lower left mandible.  They removed 1/4 of my jaw and teeth and I have a titanium plate and flap in it's place now.  It took two surgeries and 30 rads to get clear margins, but here I am a year later with no cancer.  I wish you all of the best....it's a tough surgery and treatment, but it's absolutely possible.  My tumor had broken through my jaw and so I'm learning to eat, talk and even yawn with only one hinge.  I'm not exactly like I once was, but I'm HERE and well.  I'm sorry you had to find this group, but they truly are the BEST people ever  

 

 

P.S.  I still sleep propped up due to my face feeling a little "heavy" and the sinus congestion. 

Hi tracylynn72, thanks for sharing your story and im glad to hear that youve been cancer free for a year, shows that nothing is impossible. I only found out about the MEC 2 weeks ago and had surgery on June 25th. everything has been developing so fast, dont know if i should be thankful cos it didnt allow me to look more into it and figure out an action plan. But right now im still waiting for the pathological report to see what's the next step. But prior to surgery, i was told i would not require any radiation or chemo, so hopefully that is still the case! i had 4 teeth removed, part of the hard palate and they used temporalisis flap to cover the palate. So my left cheek/face/jaw still swollen and stiff and painful And the flap is still swollen as well. Regarding the sinus congestion, i have been suggested to use NEILMED SINUS RELIEF. You should look into it, might be helpfiul to you.