Mucoepidermoid Carcinoma Low Grade

Hello LC! I just joined this site and was recently diagnosed with low grade MEC after having a growth in the soft palate removed. So far there are no signs of metastasis. Surgery seems to be the route of choice and no nodes removed. I've just begun my search of fistulas, so I'm also curious about any responses you receive. Best of luck to you! We can do this!

I appreciate the luck! My doc wants to do a PET scan (after 2 CT scans) just to make sure her plan for attaining margins is correct, and to make sure that it didn't metastasize anywhere else. After that, I'll have the surgery. It'll be an approximately 1cm hole in the upper palate. Question: how much pain were you in after the surgery? Was it an open wound? I've already had the 2mm main growth removed, and the pathology report found the cancer, but the margins haven't been established. 

Thank you for sharing that with me. I really appreciate it. 

jen2609 said:

Fistula

Hi LC2313!  I had Low Grade MEC and have an oralnasal fistula on my hard palate and wear an obturator.  I had surgery about 3 weeks ago and I'm waiting to find out when I can get the fistula closed as mine won't heal completely because they had to remove bone.  Still waiting to find out if they got clean margins but I assume they did.  I have notice that the wound is healing quickly and I swear it looks smaller.  I hope your recovery is going well!   

Hi Jen! Please keep us posted on your fistula and how it heals. I have a PET scan tomorrow and then meet with the doc one last time before my surgery. How much did the doctor remove in your surgery? Thanks, Mary

Hopefully the results come back showing no signs of metastasis!  Let me know how you get on!

My surgeon never checked my liver as he was just concerned about spread to my lungs and lymph nodes,  but it was all clear!  I know it was very strange when they told me they couldn't see the tumour.  The surgeon then had to reassure me that I didn't have a type of cancer that hides on scans, as I was concerned.  They just told me it was small and that why it wasn't showing on the CT.  

I'll be honest the pain hasn't been too bad as the mouth heals really quickly! That and I got some good pain relief straight after surgery. I have been getting a lot of facial pain and toothache strangely but they said it is unrelated to the surgery. The rest of my palate feels a little numb still.  

I know this is a great place.  I came here before I had surgery and reading other people's stories made me realise how lucky i am.  It's a great support network!  

Take care.

Jen

Greetings to everyone.

I just wanted to share my story. I had a lump on the roof of my mouth for well over a year until I decided to have it looked at by dentist and later a oral surgeon. There were no symptoms involved ie. pain, discomfort, etc. I chew tobacco and have for approx 10 years and this was the leading reason I got it checked out. Dentist refered me to a specialist who stated it was probably benign, but recommended it be removed. In February of 2017 I had the growth removed and several days later after biopsy it was determened to be MEC low grade. I was scared, but knew it was good that it was caught and was ready to do what I needed to do. 

Exactly two weeks ago I had my second surgery and the surgeon removed a large hunk of flesh from my mouth to include about 1/4 of my hard palate and some of my soft palate as well. Results of this tissue were negative for any cancer and so were the CT scans I had a few weeks prior  to my second surgery. I feel blessed, but scared that it will reoccur or it has indeed spread and gone unnoticed. THis is my second cancer diagnosis in a year. The first was two cancerous tumors on my appendix that were noticed after my appendix was removed. Very lucky!

My initial reason for joining this site was to see how other were coping with the recovery process. I have read many stories and personal experiences of others that had been diagnosed with MEC and many if not most are worse off than me as far as the recovery phase goes so I do not feel like I should complain at all anymore. I had a plate screwed to the roof of my mouth for one week after surgery to cover the majority of the wound. This was removed a week ago and I do believe my wound is healing nicely, still a little pain (mainly in my teeth near wound) and still on soft foods. I'm down 15 lbs which is the only beneifit thus far and having the cancer out of my body. Surgeon says all the tissue will fill in on its own and that I do not need reconstructive surgery. My speech is getting better, still a little humbling and unsettling especially as I am a police officer and interact with the public on a daily basis. Thank you to all for sharing your story. If anyone has any questions or would like to talk. Please let me know.  Thank you again

I just posted to you in another thread and then read this (as well as the roll call thread). Welcome! I am not as far along as you are with my surgeries, but will more than likely get the 1cm removed mid June. The surgeon wanted me to be able to deal with my growth in my breast testing first. I go to get my diagnostic mammogram today. Phew! I have to admit to being overwhelmed about 2 cancers possibly. 

I so appreciate this site and all the people on it. I think, Yogi, that your recovery and mine will be very similar. My surgeon doesn't anticipate using the plate after surgery. She wants to put a zero form dressing on it (don't know how it'll stay in the roof of my mouth) and then be able to really observe the healing process. No bone will be removed as well. So, overall, I feel really grateful in terms of the type of cancer I have and the fact that it is low grade. 

Reading the stories on here really inspire me. You all are FANTASTIC! Blessings to you all. Mary

Yogi_Bear12 said:

Similar symptoms

Jen,

I have a similar tooth ache/pain which didn't set in until 9 days after my surgery. It felt like something stuck between my two back molars closest to open wound. NOthing stuck there since I hadn't been eating anything that could get stuck! I called surgeon and they said it is most likely a dental issue and unrelated to the surgery which I'm not too sure about. The wound is so close to my teeth up there and there is little gum tissue (he cut out close to teeth) I fear that I may have a root or nerve exposed. The pain has gotten better the past few days, but manage it with ibuprofen. Let me know if you have any questions/comments. 

Hi!  Sounds like you've had a similar recovery to me!  My wound is near my teeth as well.  I'm still getting a bit of toothache but my dentist said my teeth are fine.  The side of my palate where the wound is, is numb.  It's a strange feeling but apparently it's normal and the feeling should return in the coming weeks / months.  Have you experienced any numbness?  I finally got my pathology results and everything came back clear - so I'm cancer free thankfully!  

Hi LC! How are you healing? How are the fistulas? What did the doctor say about follow up after being declared cancer free? Best Wishes...Mary