Mucoepidermoid Carcinoma Stage 4 Intermediate Grade Minor Saliva Gland

aes2017

I had a soft dark purple lesion that I found with my tongue in the roof of my mouth on the right side in early September.  Painless I might add.  Looked basically like a very small blood blister.  Went to my regular doctor that sent me to my dentist who sent me to an oral surgeon.  Oral surgeon removed the lesion and said he felt it was a non-cancerous tumor.  Pathology came back three days later as intermediate grade mucoepidermoid carcimona.  After meeting with ENT Oncologist and further testing (scope of nose and throat) and CT scan with contrast of head, neck and chest we learned the cancer had started in the palate and went up through soft and hard palate and bone up into the nasal cavity.  I had aggressive surgery on October 18th to remove the cancer and obtain clear margins.  My upper right portion of my jaw bone and muscle was removed, upper three right molars removed, most of the top palate and everything in the sinus cavity that was impacted by the cancerous tumor was also removed.  Definetly life changing.  When I woke up in I had a temporary appliance and a mouth/sinus full of surgical packing.  Also had a feeding tube down my nose.  I kept the temporary appliance for 9 days.  On the 9th day all the packing was removed and I saw the result of the surgery and the new me.  Very emotional.  At this time I got my first obturator.  I'm on my second one now.  It is a process for sure.  My voice is getting better but I'm so self conscious about it.  I sound nasaly still.  I still deal with things coming out my nose because I'm still working on my swallow and a good seal with the obturator.  I get it adjusted once a week.  I also do physical therapy once a week to try and help me with opening my mouth as since that muscle was removed I can barely open my mouth.  There is still numbness in portions of the right side of my face, mainly my nose, across my cheek and under my eye.  Stitches are slowly starting to dissolve and I am down 18 pounds due to the challenges of recovery (meds, soreness, fatigue, etc).  My surgeon recently told me I'm not a candiate for reconstruction surgery to close the hole in my mouth nor am I a candidate for the surgery to replace the bone and teeth on the upper right side of my jaw.  As anyone can understand with an obturator there are many challenges within itself surrounding that.  I can't speak or swallow without it in place.  Maybe because I'm still healing it require frequent saline flushes every day.  Some days I have to flush it 10 times.  Things get caught on it, behind it under it, etc.  Radiation wasn't necessary as the surgical pathology came back as intermediate as well.  Recently I've been having a lot of issues with my right ear.  Painful like an ear infection but moreso feels like it needs to pop to relieve pressure or as if it has water in my ear.  I can't get it to release.  And the ringing in that ear is driving my insane. 

Visitd my suregeons office and they had no idea whats wrong with my ear.  They are treating for an infection just in case that is whats gooing on.  They have also ordered a CT scan to see if anything comes up. 

Does anyone out there that has had a similar surgery have any tips on how to release the pressure from your ear?  I'm flying in about a month and I'm very worried I won't be able to release this pressure. 

I'd also like to hear about persons that have had reconstructive surgery after the obturator and if it was worth it.  Also the surgery to replace jaw/teeth.  I'm not convinced I'm not a candidate but everything is still very new and happened so fast. 

I'm beyond thankful that I got that spot checked and so thankful that my surgeon is confident he got all the cancer. 

Thanks so much. 

 

Mom68

Hello

Hi AES! I just send you a message, and hopped over here and found this thread. Welcome to the club that no one wants to join. This is a really great group of people, and very supportive. Please feel free to message me any time. I'm here for you. 

I'm happy to read that you seem to have achieved clear margins? That is FANTASTIC news. Now, you can heal and move forward. Talking was a nightmare for me initially, but the mouth really does heal well. My mouth isn't the same. The skin grew back on the roof of my mouth, but it grew back differently. However, I've adjusted. I still have just a tiny nasal fistula, but I honestly don't care. My voice has come back and things don't come shooting out of my nose anymore. 

You have achieved MAJOR things: You've had your testing, created a plan with your doctors, had your surgery, and have physical therapy going on. That's good that you are getting your obturator fitted weekly while you heal. I never had one. Hopefully that'll help with talking soon for you. 

I would appeal about the reconstructive surgery. Can you speak with someone else about it? 

Like others with MEC, we've had ear issues. I've been on three rounds of antibiotics to heal the hearing issue. And now that you mentioned it here, I've had terrible ringing in my ears. I haven't even mentioned it to anyone. I'll be sure to mention it next time I see my doctor. Thank you for mentioning it. 

I know others here have had reconstructive surgery. They'll probably post on here to respond to you. I'd also recommend looking through the threads to see if someone has had reconstructive surgery and then message them directly. 

You've accomplished so much and that is a testament to you. 

Warments Regards, Mary

tommyodavey

Support

Like Mom said, welcome to the club.  There are really only a select few of us here that had/has MEC instead of the more common SCC type cancer.  The main problem with our disease is lack of information being that is more rare than the others.

Mine was a base of tongue tumor and I only had to endure intense pain vs what you've had to go through. IMO, you really got the short end of the stick.  All I can offer is support considering our tumors were so different.

My doctor suggested Rads and so I got them.  Reason being, he had no medical documents to go off of to treat me.  Looking back, I should not have got them.  Mine was low grade with clear margins but it had spread to my neck so I needed a neck dissection.  That may have been the reason for the radiation treatment.  I had two lymph nodes positive in there so he wanted to stop it completely.  The jury is still out with my radiation side effects.  So far I've kept my teeth.

Good luck going forward.  And I too agree you should get a 2nd opinion about reconstruction.  My doctor/surgeon has a plastic surgeon on his staff just for patients like you.  

So sorry you're going through all this adjustment.  One day we hope it will stabilize for you and life will get easier.