Mucoepidermoid Carcinoma

matthew79 said:

Mucoepidermoid carcinoma of the lung
Aurora7
I also was diagnosed with this same cancer, I had a chest x-ray 4 months before I got pnumonia, it was clear. When I got pnumonia there was something showing on the x ray.
Had a CT scan then broncoscopy in Windsor. They had never seen this before so they sent
me to London Health Science Center. There I had a P.E.T scan that showed cancer in the lower left lobe and a abnormally large lympnode directly behind the tumor. Needless to say at 30 years old I was devistated. The surgery was brutal they gave me a spinal that was totaly useless, I had to endure all the pain from the surgery as soon as I woke up. I cant stop thinking about it coming back, even though they told me it wouldnt. Other than the pnumonia I had no other symtoms before they found it. I am glad they sent me to London only because I have heard so many bad things about the doctors in Windsor. My sergon, Dr. Richard Inculet was amazing I am told he is the best doctor I could have been refered to.
After they removed the lobe and checked the node directly after they removed it, they said it was clear of any disease and the section of lung had low grade mucoepidermoid. I hope you are doing good, it would make me feel better to hear that you are.

FamilyForce5 said:

Just read your post and was
Just read your post and was surprised how similar your situation is to mine (or should I say our husbands.) My husband is 32. His surgery to remove the mucoepidermoid carcinoma tumor was on Dec 21st and we did not know if the cancer had spread to his sinus cavity also. There was a chance he would have to have the hemi-maxillectomy. THANKFULLY he only needed the partial which is still a huge hole from hid upper palate to his sinus cavity. He had his opturater unwired and gauze removed on the 29th.The opturater then had to be extended to cover the hole which was larger then expected.

They sent us home 3 days after surgery and since that time my husband has lost over 20 lbs. Eating even pureed things is almost impossible,along with drinking. I wish there was a way to get more nutrition in him, as he might still need radiation. Any tips? His pain has been really quite bad and he has been feeling really down.

The path report came back that there was no cancer in the bone, but the was peri-nerval? (cancer in the nerves.)His Dr. is consulting with some other doctors about whether the side affects of doing radiation would be worse then just leaving it alone for now. We will find out next week.

Praying for you as you wait for the pathology report.

seesaw said:

Hello, I am currently a month past surgery for this type of cancer. Although the surgeon confirmed clean margins, the radiology oncologist wants me to have radiation as a prophylactic option. He is worried about one margin and says I should have radiation to prevent recurrence. After reading, I am very frightened about the side effects of the radiation and don't know if I want to go ahead with the radiation. It is my choice, but I am getting conflicting advice from friends and family. Can anyone help me with this?

ritikparikh said:

Mucoepidermoid Carcinoma (right Parotid Gland)

Hi,

My wife (age:26) is diagnosed wtih Mucoepidermoid Carcinoma of the right parotid gland.

It started as a cyst (a small bump) just below her ear. Off late it started paining in that area so we consulted an ENT and he suggested to get the cyst removed. We surgically and got the biopsy done for the cyst.

This biopsy result shows low grade Mucoepidermoid Carcinoma of the right parotid gland and the ENT has suggested to completely remove the right parotid gland. the biopsy results show that the outer soft tissues are tumor free.

Kindly suggest what needs to be done. What changes need to made in terms of lifestyles. How to take care of this once the surgery is done.

Thanks in advance

ritikparikh,

Welcome to the H&N forum, I am sorry to hear about your wife.

You have responded to an older post and may not get much attention.  To reach a wider audience I suggest you start a new post and introduce yourself again.

There are many people here that can help you.

Matt

Last year around April during a route dental cleaning, my amazing dentist found the lump in the top of the roof of my mouth. The lump never bothers me and I never felt it. Went back in December and was sent to another amazing specialist in Montclair, NJ. I went on lunch break to find out the results. SMH crazy how in a moment life would never be the same. I came on this website to find one story that would make me feel better about what I was going to go through and I never found one story that seems to close to mines. I was diagnosed with a low grade and survivor seem to be high. Went to NYU to see the specialist that would also do the surgery. He made my feel like I would walk away with my teeth. the surgery was last Thursday and the pain has been one for the books. 

the path report came back in record time with cancer free. I go for the follow-up and see what next. 

I caught this within a year and it was the scariest thing to go through but it does not have to be. 

Why is it so many cases of MEC seem to be unusual?

I was a fellow sufferer of MEC - in my case I had a neck lump but they couldn't find a primary, and when it was diagnosed it was MEC intermediate grade. I've actually just posted that I've had my 5 years all clear, and the primary never turned up. My doctor said MEC with my presentation at the age of 33 was like 'hen's teeth' and he'd never seen it before. I never had to have radiotherapy because we were waiting for a primary site which never appeared, but I had a neck dissection.

At least we aren't a boring bunch - we provide our doctors with interesting challenges!

And I also think we are kind of lucky that MEC seems to be quite beatable in general terms. Sounds like you and your doctors are well on top of things sdavids so I'm sure you will get throught it with flying colours.

Cheers

Leo

saltydawg2 said:

diagnosed with same thing
Hi my name is Phil and i was diagnosed with a cancerous growth on the roof of my mouth after visiting a dentist just about a year ago. It all started with a small lump which got biopsied and determined to be cancerous. Surgery was performed to remove the affected area (outpatient) and while performing surgery my ENT found that the cancer had migrated to the bone on the roof of my mouth. After a bit of recovery time, I had a second surgery to remove a portion of my hard pallete and my upper teeth and jaw removed. I wear a dental prothesis to fill in the hole called an obturator. I had 31 radiation treatment to ensure that all the cancerous cells were removed and its been a year now and have just had a new pet scan to check if all is well. Should have the results soon. The worst part for me was the radiation..every day except weekends for six. The radiation caused some pretty serious side effects..but I needed no chemo fortunately. I feel pretty good now..my last radiation treatment was mid September..I am going to the gym regularly and working out to build my strength. Maintaining a positive attitude throughout was the key to dealing with this. I would be happy to discuss more with you if you are interested. My email address is saltydawg2@yahoo.com. Feel free to send a message if you have any questions I may be able to answer...Regards...Phil Reed

what is status of your dieses , i pray to god that every person of this earth is to be saved from any type of cancer, but meanwhile i am too effected from this wright now please guide me what happened right now poat radiotherapy

Oldman22 said:

invasive mucoepidermoid carcinoma

I have been reading about everyone's trials and tribulations dealing with this cancer. My hat is off to everyone.

Mine was diagnosed in 2016. I had a spot under the rear of my tongue that no one could seem to find anything wrong. A PA-C at an After Hours Care found it. Sent to and ENT and he almost didn't find it but finally did and did a biopsy. It turned out as cancerous and I went for a CT Scan. The surgeon felt it was a simple surgery. I would stay in the hospital a few days. He would put in a trach tube for a couple of weeks and a feeding tube. Surgery ended up going close to 10 hours and was a lot more complicated than anyone thought. It was apparently one of 100 cases known. I stayed 9 days and went home. With the trach tube I had to intake nothing but liquids. Ensure and another liquis that was covered under my insurance. The tube came out in three weeks with minimal problems. The feeding tube is still in place. I was never able to resume swallowing. That plus my left jaw was removed and rebuilt with my Pectoral muscle. I learned how to make all kinds of liquid food. My favorite is a pizza. I crush Cheez-it crackers to dust and mix a bloody Mary mix with it. Tastes similar. Of course wash it down with a beer and everything is OK. With scans every 2-3 months it looked like everything was going fine....until Christmas this year. Tumors were discovered on my liver and some new ones where the last were removed in my neck and possibly in my thyroid. For the first one, I under went surgery, radiation and chemo. Had very few side effects from the chemo with 39 treatments but the radiation did a number on me. I was to be out of work for 4-6 weeks. It ended up as 11 months. This current time around they are only wanting to do Immunotherapy which is a different kind of chemo. It will be once every 3 weeks for 24 months. When they first diagnosed it I was given 6 months. But working with my Interventional Radiology Dept they were able to go in and inject a chemical into the liver tumors. After 3 weeks and a MRI scan it appears that they killed about 90-95 percent. I go back in 2 weeks to have the live spots reinjected. Now they are saying IF eveything goes right I should see 2-5 years. I consider it just a bump in the road and still try to do every thing I can. I noticed many participants here have similar ideas. My motto is "I never give up, I just have to back up and punt sometimes".

have been reading about everyone's trials and tribulations dealing with their cancer journeys your hats off to them I tell you by reading about your cancer treatments description and all you went through was no walk in the park. You have been through a lot and still going-God Bless

Charmin50 said:

Mucoepidermoid carcinoma of the nose

Hi! I just had surgery three weeks ago to remove my MEC, high grade, tumor from my nose. Has anyone else heard of anyone on here who has/has had that location of this cancer? All the studies that I've read are at least 7 years old and older.

 

Thanks

Welcome to the forum and welcome to the MEC club that has only a few members.  So sorry you got this but none of us asked for it.  It is a rare cancer and please try not to do a Google search.  Why?  Because the answers tend to be negative and worst cases.  You need positive feedback and all the help you can get.  Most of the answers will be found here in the archives.  If not, maybe try the best institutions like M.D. Anderson to look for research papers.

Being that MEC is so rare you may not find as much as you want here.  With me, no one had a base of tongue tumor so this site was more for support than anything else.  That, plus all the information I got regarding how my radiation was going to affect me.

Please stick around and the great people here will support you the best we know how.  Plus, any additional information you provide will be an asset to this site.

Tom