Mucoepidermoid Carcinoma
Comments
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Mathew79matthew79 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.
My husband just had his surgery December 7th of this year and they took 2/3 or his right lung. He too had a spinal that did no good. He endured excrutiating pain as well. He has a lot of muscle spasms and even though he is feeling better he has painful burning sensations where the bottom of his lung would have been that the doctor says is from cutting his nerves. Are you having any of these issues? Are they suggesting that you have any chemo at this time? They are suggesting this for my husband. I would love to hear from you to share this painful experience. Interested in your doctor commenting that it wouldn't come back. Our oncologist said he is not real familiar with this cancer so wanting to order the chemo just to be sure? Hope to hear from you. Thank you.0 -
Mucoepidermoid tumorrrosario21 said:I had low grade Mucoepidermoid Carcinoma
Tonja4:
I had a very similar situation! My tumor grew on my palate when I was pregnant with my daughter. I also thought (and was told by an oral surgeon) that it was a "pregnancy Tumor" associated with pregnancy and hormones. I went through two surgeries leaving me with a hole in my palate that enters into my nasal cavity.
I myself never smoked and considered myself healthy...
I remeber what it was like emotionally having to go through everything, especially being a new Mom and all. I was fortunate enough that I did not have to have radiation, I am so sorry that you will have to. If you need to chat or need someone to talk to who has been through a similar situation I would love to chat.
I hope that the babies are doing well.
Godspeed,
Becca
My wife noticed a strange purple lump in the roof of her mouth within a couple months of the birth of our second child in 1994 at age 37. We had not heard the term "pregnancy tumor" but It sure seems to fit in some cases. It turned out to be a Musoepidermoid malignacy that had to be removed but unfortunately my wife and I chose to ignore after seeing an ENT that said it was most likely a broken blood vessel possibly from childbirth. In 2003 through a series of events another Doctor oral surgeon (Dr. Peter M. Scheer in Rancho mirage Ca.) took one look at it and scheduled my wife for a biopsy. It came back malignant and Dr. Scheer operated for 5 hours at Eisenhower Medical center, removed the tumor and enough surrounding tissue and bone that would have fit a golfball. He kept at it until all the margin tissue came back clear of cancer from the lab. He then used donor tissue from my wifes belly and performed bone grafts to rebuild the upper palette and jaw of my wifes mouth. All this was done in one surgery. ( I found out later he is a world renowned surgeon and teacher) She spent 3 days in the hospital and a couple weeks a home recovering with very little pain and her upper palette has healed nicely and looks normal. No chemo or radiation was required and she has been cancer free 8 years now. We have been incredibly blessed to have Dr. Scheer be the one to take care of my wife. He did an incredible job. I hope this gives hope to others that contract this cancer that the outcome can be good. Godbless and good luck, Cliff0 -
hole in upper palateFamilyForce5 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.
My surgery that created the hole in my upper palate was 12/6. I am seeing a periodontist working with my medical docs. The mouthpiece I wear to fill the hole is gradually getting specifically fitted to my needs as the healing happens. Fluid still comes out of my nose once in a while, but as time goes by things are working better. Smoothies especially with nut butters can be soothing and nutritious. I do best with thick soups, not lumpy. Scrambled eggs add protein as well. Best of luck!0 -
mucoepidermoid carcinomaLB209 said:Mathew79
My husband just had his surgery December 7th of this year and they took 2/3 or his right lung. He too had a spinal that did no good. He endured excrutiating pain as well. He has a lot of muscle spasms and even though he is feeling better he has painful burning sensations where the bottom of his lung would have been that the doctor says is from cutting his nerves. Are you having any of these issues? Are they suggesting that you have any chemo at this time? They are suggesting this for my husband. I would love to hear from you to share this painful experience. Interested in your doctor commenting that it wouldn't come back. Our oncologist said he is not real familiar with this cancer so wanting to order the chemo just to be sure? Hope to hear from you. Thank you.
I did have burning sensation but it was mostly topical just under my chest in the front.It was quite painful directly after the surgery for a good month and I may have noticed some burning inside like where the lobe was but it didn't last too long. He told me that there are no nerves inside your body like in your lungs? What I felt was mostly muscle pain from the incision. Where is his incision, that would directly affect where these burning sensations are. Now I have this numbness just under my chest in the front. Did you have a PET scan? If you did and there was uptake in any other organ inside your body I would expect the physician to think about chemo. If you didn't I would ask him about having one before you have chemo, it is toxic and if the cancer is gone it would probably do more harm than good. PET may not be covered in the United States and could cost up to 2500$ In my opinion it was worth it.0 -
Same cancerseesaw 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?
I read you comments from September 2010 and am interested to hear what's happening with you now if you don't mind. I have had surgery to remove a primary tumour, submandibular area grade 3. Appears to be clean margins but don't know what I should do now ie radiation etc and see you had same concerns.0 -
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
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wiferitikparikh 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
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MECCivilMatt said:wife
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
I just had surgery for MEC and actually started a post a couple of days ago. check it out (I found this one first and didn't notice the dates!)
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Mucoepidermoid Carcinoma
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.
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You have Company
Yes, you have one of those rare cancers that fall into the other 5% or so of DX's. The most common site for MEC is on the upper palate close to the Parotid Salivary Gland. It being a salivary gland cancer, that makes sense. Mine didn't. I had a tumor on the base of my tongue that stumped my doctor. He said he couldn't find another case study to see how to treat me. We opted for surgical removal of the tumor, (low grade with clear margins like you) a radical right neck dissection because it had spread to my lymph nodes, and then radiation because it had spread. No chemo. He said it wasn't effective on this type. You caught yours earlier than me so that's why you had less treatment. Great!
Medical science has come a long way with not having to get a prostetic for the roof of the mouth. They can make a flap that is very functional. It sounds like you didn't suffer from that so congratulations on having a clean bill of health. If you have any other questions about MEC go ahead and PM me. I'll be happy to share as much information as I know. Like you said, there are only a few of us here and I mostly check in monthly to look for others like myself.
Tom
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MEC Weirdos
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
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MEC Low Gradesdavids109 said:Mucoepidermoid Carcinoma
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.
I was just diagnosed my self in Feb'17 and had Surgery 4'17. I have a pretty big hole and it's healing. They said MEC Low Grade and clean margins. I am still going through the healing process. My mouth is going through all kind of stages and I am a little freaked out but staying positive since they have clean margins (reported on the final pathology report on a 2 week follow up) and no other therapy is recommended at the time. Curious how your healing process is going or went? I might need a retainer they are calling it for my palate but it depends on the healing since I am only 1 month out of surgery. I was treated by the Rutgers group.... waiting for the next follow up to see what the Dr says.... Not sure what to expect during this whole healing process.
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what is status of your diesessaltydawg2 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 Reedwhat 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
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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".
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Oldman22 You Say YOUOldman22 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
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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
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Odd CancerCharmin50 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
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In the MEC Clubtommyodavey said:Odd Cancer
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
I'm just now seeing this thread, but had a MEC stage 4 base of tongue diagnosis in 2009. Obviously I survivied
. I agree that it's hard to find much on MEC, but did learn that the survival rate is lower for MEC than SCC by quite a bit. My docs told me that they didn't see many cases, so just decided to treat it like it was SCC. 36 rads + 3 Cisplatin chemos. No surgery. If anyone has any more info on MEC, please pass it along.Mike
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