Mucoepidermoid Carcinoma Low Grade

LC2313

I was diagnosed with MEC Low Grade on my soft palate. I have now had surgery and have been healing for a month. I have a oral nasal fistula about 5-6mm. I will be visiting a specialized dentist to make me a Palatal obturator. I was curious if this heals on its own with time. Chemo and radiation are not recommended since the surgery pathlogy report came back with clear margins and it was low grade. They cut out about a silver dollar size from my palate. It seems to be healing. Just a little nervous about down the road, since I have never dealt with anything like this before. I was numb when I was told it was cancer. All Scans came back good and that they cancer was localized to my palate and had not spread.... has anyone had a fistula that healed on it's own?

 

Mom68

Hi!

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!

LC2313

Hi Mom68.... good luck to you

Hi Mom68.... good luck to you! Keep us up to date for support. My recovery is going well honestly.  Clean margins is the best news. The pain for me has not been horrible either. I am just praying for this orsl nasal fistula to heal with time. 

Mom68

Thanks!

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. 

LC2313

Mom68 said:

Thanks!

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. 

You're welcome

It was an open wound.... with an opening to the nasal cavity. Not sure the CM's. I know the biopsy they removed 5mm. I did not have a PET Scan and my CT scans came back all clear that it did not metastasize anywhere else. The covered my open wound for like 2 weeks with a plastic and then took it off for healing. The pain is not horrible , it is more of annoyance then anything else.

 

Mom68

Gotcha

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

jen2609

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!   

Mom68

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!   

Please keep us posted

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

jen2609

Hi Mary!  I've not had a PET

Hi Mary!  I've not had a PET scan before - hope it goes well!  I only had a CT scan and the tumour didn't even show up on it!  The surgeon removed the tumour and a 5mm margin of healthy tissue.  The fistula is about 2cm.  Thanks, Jen.  

LC2313

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!   

Obturator

I had my surgery about 6 weeks ago. Mine was on the soft palate. I have two small fistulas to my nasal cavity. They seem to be healing. I have not been fitted for an obturator. I am waiting til more healing occurs. The fistuals might close on their own. They are about 2-3MM. I eat soft foods. So we will see. I did get clean margins, so I am hoping this all soon is a thing of the past and check ups go well in the future. Good Luck to you !

 

Mom68

PET Scan Complete!

Hello All! Well, I had the PET Scan. It was okay. I sat for an hour in a recliner and was told to not talk after they injected me with the radiation. Then, the scan itself took, I guess, about 30 minutes? I wanted to ask them if they saw anything, but they can't tell me even if they did. So, pins and needles for 2 days until the results come in. MEC can distantly metastasize (man, do I hate that word, I've had to spell check it 3 times), and my surgeon is concerned that it may show up in my liver. Why my liver, I have no idea, but I'll be sure to ask her when I meet with her after we get the results back. 

Wow, Jen! It didn't show up on your CT scan? Dang! You go through the whole CT scan and nothing, even when you know it is there? Wow. How did they handle that? 

I have to say, I've been so caught up in all of the tests and results and knowing what I have and the staging and all that, I haven't asked one question about the surgery. I know the 2mm they removed from the roof of my mouth hurt, so getting the 8mm removed up to the bone (but so far, no bone removal) is something I stress about. But although I hate having cancer, I feel blessed that it isn't worse. Reading people's stories here, I have shed many a tear. Reading past threads and seeing how great Hondo has been through the years with people, and then reading about Hondo's passing still hits me. His words really resonate with me. And he's just one example of some of the very supportive people on here. 

ekdennie is another person on here who (if you put her in the search engine on here) had MEC and has great information on here about it. She's been posting since about 2010. I would like to thank everyone on here for being supportive to each other. It isn't a club we wanted to join, but now that we have, we know we're not alone. 

God Bless you all. Mary

jen2609

MEC

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

Mom68

PET Scan Results

Well, not exactly bad, but not great either??? Not sure. The great news is that the scan showed "no avid nodal or distant metastases." Yay! The not so good? Something in my right breast: "Indeterminate small focus of uptake in the upper outer right breast mid depth." They recommend getting a mammogram and follow up with ultrasound if needed. 

I have a posted thread now in the breast cancer forum to see what they think of that verbiage. I'm hoping we find out it is nothing. Phew! 

Thanks for the great support here! Wishing you all the very best. Mary

Yogi_Bear12

MEC Low Grade

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

Yogi_Bear12

jen2609 said:

MEC

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

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. 

Mom68

Ah, Yogi Bear!

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

Mom68 said:

Ah, Yogi Bear!

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

Thanks Again!

Mary, 

Thanks again for your response. I sent you a private message, not sure how to add people as friends on here. Please contact me if you have any questions about upcoming surgery as it sounds like you will be having a procedure similar to mine. Thanks for the support and good luck!! -Nick

jen2609

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. 

Tooth ache

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!  

Mom68

Jen Cancer Free

Hi Jen! Sorry I didn't respond when you posted this...sometimes I get lost in the details of the cancer and treatments and recovery...I forget the main part! Which is...CONGRATULATIONS ON BEING CANCER FREE! (sorry, lots of exclamation points) That really is such a huge milestone. Wow! When does the doctor expect you to be free of the obturator? How is the fistula? Best Wishes...Mary

Mom68

LC

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

Mom68

Oncology Question

Hi all again. Question for you all...did you all consult with an oncologist? Because my MEC was low grade, the surgeon didn't recommend that I consult one. So far, I haven't. I don't plan to unless the breast growth shows cancer (have to see a breast surgeon, but the growth is tiny, so I'm not stressing). Have you all seen or plan to see an oncologist? Thanks...Mary