Mucoepidermoid Carcinoma Low Grade

I'm not great, but I'm okay. Honestly, the fistula has been harder to deal with than the healing. I had all the skin removed to the bone on the hard palate, but the fistula? I was not ready for it. The skin has grown back super fast, which is great, but the fistula hasn't healed. And I have sinus issues on a good day. So, when I have sinus drainage, it drains, well, in my mouth, which makes me sick. I've thrown up a ton. I've lost almost 30 pounds so far, which is good because I need to lose the weight, but it was sure a hard way to lose it. And I just make no sense when I talk, and it comes out as a whisper, even when I'm putting air behind it. I sometimes have to yell to be heard from a few feet away, as the air escapes out my nose before it can the mouth. It just takes so much energy to talk, walk, move, shower, etc. I'm finally able to stand for most of a shower. The room still spins if I move too fast. On a good note, the skin is moving quickly to the edge of the fistula, which means it should start closing up soon. That should take care of a good amount of the sickness and enable me to not seem like such an oddity...well, less odd than I customarily was.  

I feel like such a complainer as I type all that, and am tempted to delete it all. However, if it helps one other person know that they aren't alone in feeling this way, then maybe it'll help. 

Our cancer, MEC, has the ability to distantly metastacize. It doesn't seem to spread like a normal cancer. So, although I would also be super stressed about the scans being so close together, I'm really glad they're following up with another scan to make sure everything is fine. I go back to see my doc on Friday, and I'll ask her about the swollen nodes and follow up with a question about the chest. Hey, it wouldn't hurt to get her opinion on this stuff as well. I have you on my calendar for the 25th! I hope to hear from you as well LC, to see when I can specifically pray for you during your scan as well. 

One of the things that I haven't discussed with my doc is follow up tests, and when those will begin. Honestly, I just don't think I can rely on those much, as NOT ONE SCAN saw my cancer. One PET and 2 CT scans, and nothing showed. So, how do you find a cancer that doesn't show up? I mean, I understand the need for scans, but if they show nothing, then...yay? My surgery, I found out, was a bit more complicated than I was initially told. What was supposed to be a 1 1/2 hour surgery ended up being 4 hours. The doc cut out what she figured where the rest of the cancer was, and the pathology found no cancer. So, they put their heads together and figured they'd have to go deeper, toward the sinus, and that's where they found the remaining cancer. So, they established new clear margins after that, and finished up. Mine was pretty close to the sinuses. 

Oh! And the tooth pain you all have talked about has been something I've experienced as well. The back 3 molars on the top right side are the ones that hurt, and the doc recommends brushing those more, flossing, and she prescribed peridex for a rinse. I do bleed, but it has helped the healing process along. The doctor said the more I brush, the faster I'll heal. Now, granted, I'm only to brush twice daily, but they stress that I brush those teeth just like any other teeth. So, I do that, even though it hurts. But the pain is getting better. 

God Bless you all. I don't know what I'd do without you all. My family has been great, but it is wonderful to have people who have gone through the same as I have to chat with. Warmest regards, Mary

Mary, I'm sorry to hear that you're having a tough time.  I think my surgery was only about 40 mins, maybe an hour, so you've been through a lot.  My fistula has healed really well and I had bone removed.  I promise you it will get better.  A couple of months ago my voice was a whisper and I had really bad sinus drainage, but things are much better now.  I got upset that people couldn't hear me and were asking me to repeat myself all the time.  I still need to obturator, but in all honesty it causes me more discomfort than it's worth.  I'm still waiting on a more permanent one but if the fistula keeps healing I may not need an obturator anymore .  I've lost 35lbs since surgery but I needed to lose weight in all honesty.  It would be good to hear your docs opinion about the scans, as it's always good get as much info as well all can!   

My MEC did not reach my sinuses either and was classified as a grade 1 tumour, so the lowest grade.  The only thing the pathology report said was that there was evidence of scarring in my minor salivary glands. No idea what that means.  

It's interesting that MEC did not show up on any of our scans.  I guess that's because our tumours were relatively small and low grade?  My surgeon seemed to think it was a positive thing, so I'll keep thinking that way!  

Thanks to both of you - I will let you know how the scan goes, although in the UK we tend to have to wait a while for the results.  No news is usually good news though!  

Praying for all of you.  Take care, Jen. 

I've just had clear scans a year following treatment for low/intermediate grade mec and feel very positive. This cancer has very low metastatic potential and is more likely to recur locally. All will be well xxxxx

This is the week for 2 of us, LC and Jen, to have further scans. I'm thinking about you all and praying all is well. Please keep us posted on how it goes. God Bless...Mary

LC2313 said:

LC

hi all.... So they scheduled my scan for 8/16... The waiting is so bad. I am concerNed because the felt swollen glands. I have felt my neck and sometimes I think I feel something and others I don't. My family has been a huge support. I have an 18 year old in college and a 14 year old starting HS. I thank god for them everyday. my husband is great support. I am feeling more confident that this will be just routine. My cancer was very low and showed no where so I am praying. Thank you all for the support. This network is a godsend. Doc told me this week, not to worry. He said same thing had yours Mom68 but he wants to make sure. Thank you everyone Xoxo Lis

I've been thinking about you, Lis, and Jen! I'll set my calendar for 8/16 to say special prayers for you. Positive thoughts!

I have a 21 year old who is finishing college (she'll be an engineer) and a 15 year old starting her Sophomore year in a few weeks. Where did this summer go? I have to kick it into "mom gear" right now and help them get ready for school. God bless you all...and Jen, your scan is for tomorrow, correct? We've got this! 

Warmest regards...Mary

Hi all, 

I was recently diagnosed with low grade MEC on my right hard palate. It is 15mm and there is minor bony remodelling. So the surgeon advised to cut some bone and use my cheek for FAMM flap surgery. I am abit nervous about this. Did anyone had same experience? Mind to share your surgery and recovery experiences?

evie wan said:

Low Grade MEC

Hi all, 

I was recently diagnosed with low grade MEC on my right hard palate. It is 15mm and there is minor bony remodelling. So the surgeon advised to cut some bone and use my cheek for FAMM flap surgery. I am abit nervous about this. Did anyone had same experience? Mind to share your surgery and recovery experiences?

 

LC, Jen and I had nasal fistulas where there is a hole in the mouth leading to the nasal cavity. None of us had the flap surgery part. You may want to do a search on flaps on this forum and read about how people have healed from that. 

The great news about the mouth is that it heals quickly. I had my surgery for low grade MEC in June, and I'm mostly healed. I have no salivary glands on the roof of my mouth anymore, so that is an adjustment. My general dentist recommended I buy biotene, which reportedly helps with the dry mouth. I haven't bought any yet, but am willing to give it a try. For the first two to three weeks after surgery, I drank Boost, which seems to be a pretty standard nutrient drink around the forum. Overall, you should heal well, and we're here to support you in any way we can. 

When is your surgery scheduled? Have you had any scans of the head/neck? Best Wishes...Mary

evie wan said:

Hi Mary,

Hi Mary,

 

My surgery is scheduled on 6 Sept. I did both Ct scan and MRI for the head/ neck. Luckily the rest of the parts are clear.

I wonder what size was your surgery as mine requires flap surgery to fill portion of the roof of the mouth. Without filling back the opened hole, I am amazed you are healing quickly that is great. Did u did any preparation prior to the operation?

Thanks for sharing, that'd made me feel a lot better.

The skin in the mouth grows back really fast. I had raw bone, and could feel it, which was odd, but again it healed well. This is just my opinion, but it APPEARS that your surgeon is anticipating creating a pretty big hole, and wants to fill it with the flap so you are more comfortable. I personally think that is great, as it shows the surgeon is thinking about your recovery and healing...very good sign of a thoughtful surgeon, in my opinion. You could ask the surgeon why he/she felt the graft was necessary, and also ask about any complications or special instructions you may have after the grafting/flap creating is complete. 

I read alot on here on various threads about advice that people had about preparing for surgery. What I took away from many things that I read was to eat, drink and be merry.  Eat bread, eat bananas, eat fruit and veggies, eat spicy foods (if you prefer that). Eat hot foods, cold foods. When you have your surgery, you can't eat that way until you heal...so enjoy it now. Also, get out and exercise, if you can. Walk, hike, etc. Enjoy living and activity now, as you'll need to rest after the surgery to recover. And exercise BEFORE surgery has seemed to speed recovery AFTER. And funny enough, mouth health is important. Brush well, floss, get a water flossing tool (if you like that, and I do, so I got one). 

As for recovery and healing, Peridex, a prescription mouthwash, helped a ton. I even have Magic Mouthwash (which is typically used for radiation patients), but it also has helped. I just finished my 6 month check up with my dentist, and they raved about how great my teeth, brushing and flossing were. My gum health was exceptional, and they asked what I was doing, I mentioned Peridex, and they raved about how great that product was. They even prescribed 6 refills for Peridex, and with my deductible met for the year, the bottles are only 89 cents each. Super Cheap, right? I plug the Peridex into the water flosser and it works great. 

Best Wishes to you...Mary