Mucoepidermoid Carcinoma

Hi Marc. I just found your entry. I also had mucoepidermoid carcinoma. I was diagnosed in 1998 when I was 19. Check out my webpage on this site. I explain the details of my situation there. I am doing well and hope that things have worked out for you since your surgery!

jaylene19 said:

Hi Marc. I just found your entry. I also had mucoepidermoid carcinoma. I was diagnosed in 1998 when I was 19. Check out my webpage on this site. I explain the details of my situation there. I am doing well and hope that things have worked out for you since your surgery!

Information needed
Hi,

I am the mother of a 19 year old female who was just diagnosed with this type of cancer. Would you be willing to share your experience? Thanks

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

Radiation side effects
Hi Phil, my name is Kim Brewbaker. I am 40 years old. I was diagnosed with Mucoepidermal Carcinoma last summer. I've had two surgies to remove soft tissue, nerve and part of my mandible. I had chemo and 35 radiation treatments. The treatments ended December 31, 2008. Things were improving slowly. However, a couple of days ago, I noticed that I was having trouble swallowing anything. I went to the ENT surgeon yesterday who said he couldn't really see anything. It could be an ulcer. The pain has brought me to tears many times. I guess I just thought the side effects were over. The one I will always have is the inability to open my mouth very far, but I am learning to live with that one. So now, in addition to not being able to "fit food in", I can't swallow. Will this ever end?

jkbrew said:

Radiation side effects
Hi Phil, my name is Kim Brewbaker. I am 40 years old. I was diagnosed with Mucoepidermal Carcinoma last summer. I've had two surgies to remove soft tissue, nerve and part of my mandible. I had chemo and 35 radiation treatments. The treatments ended December 31, 2008. Things were improving slowly. However, a couple of days ago, I noticed that I was having trouble swallowing anything. I went to the ENT surgeon yesterday who said he couldn't really see anything. It could be an ulcer. The pain has brought me to tears many times. I guess I just thought the side effects were over. The one I will always have is the inability to open my mouth very far, but I am learning to live with that one. So now, in addition to not being able to "fit food in", I can't swallow. Will this ever end?

Radiation
Hi Kim..Phil Reed here..sounds like we have gone through similar situations. I am 6 months out of radiation and can tell you that I periodically have trouble swallowing with pain as well. The pain is not severe, however, very uncomfortable. I think my problems are related to the dryness in my mouth and throat. I still have dry mouth and trouble opening my mouth all the way. I gargle with a solution of baking soda and salt three or four times a day and it seems to help. Unfortunately it sometimes shoots out my nose...but oh well. haha..got the results of my pet scan about a week ago...doc says it looked good, BUT , a 3mm spot on my lung is cause for concern..he says its probably scarring from the radiation treatments..but to be safe..I will have a CT scan in June to confirm what it is. I'm not worrying about it..taking it all in stride. You will begin to feel better, I can tell you that. I continue to gain my weight back..however slowly..I was 190 lbs and fit before all this and at the end of the radiation I weighed in at a whopping 140..I'm back to 160 now. I have instant breakfast with two teaspoons of peanut butter, some powdered protein and milk every morning. My doc was concerned about my weight but is happy to see I am gaining it back. He asked what my secret was..i told him about the shake and that I have to force myself to eat two meals and the shake every day. I used to be a snacker..not anymore.
You will feel better..gotta be patient...hang in there.

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

Palate remove concerning.
Hi Phil, after reading your post 2 i notice that i have some similars symtoms when i discover my little tumor ,it was in my left posterior soft palate in a low grade called adenocarcinoma of the minor salivary gland and was not spreaded TG just locally, no pain ,no color.I have lots of questions anwsered here such they help me a lot specially after the small portion removed were the tumor was near my last upper molar ,but i never find anyone who the palate was remove and can tell me some awnsers.,See if you can and i really will appreciated.
My question is. After a month and 3 days of the partial removed of the tumor ,i still feel numbness in the inside gum and in little piece of the hard palate close to the gum line ,just picture ,,,up left inside gum line , it make me feel like is sweeling but reality i think is numbness and feels like i have a bubble gum stuck there ,,Q? it is normal to feel that ,maybe the nerves was cut and need to re-aligned again ??do you experience that too or not .
THANKS FOR TAKING YOUR TIME.,Roxie

saltydawg2 said:

Radiation
Hi Kim..Phil Reed here..sounds like we have gone through similar situations. I am 6 months out of radiation and can tell you that I periodically have trouble swallowing with pain as well. The pain is not severe, however, very uncomfortable. I think my problems are related to the dryness in my mouth and throat. I still have dry mouth and trouble opening my mouth all the way. I gargle with a solution of baking soda and salt three or four times a day and it seems to help. Unfortunately it sometimes shoots out my nose...but oh well. haha..got the results of my pet scan about a week ago...doc says it looked good, BUT , a 3mm spot on my lung is cause for concern..he says its probably scarring from the radiation treatments..but to be safe..I will have a CT scan in June to confirm what it is. I'm not worrying about it..taking it all in stride. You will begin to feel better, I can tell you that. I continue to gain my weight back..however slowly..I was 190 lbs and fit before all this and at the end of the radiation I weighed in at a whopping 140..I'm back to 160 now. I have instant breakfast with two teaspoons of peanut butter, some powdered protein and milk every morning. My doc was concerned about my weight but is happy to see I am gaining it back. He asked what my secret was..i told him about the shake and that I have to force myself to eat two meals and the shake every day. I used to be a snacker..not anymore.
You will feel better..gotta be patient...hang in there.

Hi Phil,
Thank you so much
Hi Phil,

Thank you so much for your reply. Believe it or not, but I am STILL dealing with the pain. At one point, I was told I had shingles. However, the ENT surgeon took a biopsy which turned out to be "just an ulcer". I cannot touch it. It is way far back on my soft pallete. I have to use "miracle mouthwash" before I eat. Sometimes I will use it in the middle of what I am eating, too. This has been going on for 5 weeks. I have lost 50 pounds (since Dec), but honestly, the weight loss is the ONLY positive thing that has come of this nightmare called cancer. I am now 147 pounds - a weight I haven't seen since 1992 - ha! I miss eating. I miss pizza and subs the most. I can't eat pizza because it burns and is hard to chew (of course). Subs are impossible. I can only open my mouth to fit one finger in. I eat a lot of soups. I drink Boost (just started that) and Carnation Instant Breakfast. I'm going to try what you said about adding stuff to the Carnation Instant Breakfast. I have added whey protein before, but not peanut butter. Boy, I miss bread! Did you have mouth ulcers after treatment? I am 4 months out of radiation and chemo. I have a PET next Friday. I'm so glad your PET looked good! It's also great to hear you say that you aren't worrying about the spot on your lung. It does no good to worry. Listen to me, I can say it, but I can't live it. I not only worry, I sometimes feel sorry for myself or obsess in a way - about the pain and inability to eat what I want, mainly. I hope to hear from you soon. Kim

tonja4 said:

low grade adenocarcinoma of a minor salivary gland
HI. I was diagnosed on April 22nd with a low grade carcinoma of a minor salivary gland on the roof of my mouth. I am 37 and just gave birth to identical twin girls on March 21st so this has been pretty emotional for me. While I was pregnant I noticed a bump on the roof of my mouth...it didn't hurt and we thought it was something to do with my pregnancy and hormones. Turns out it is cancer and I have had two surgies to remove it and have a temporary obturator. The crazy thing is I have never been a smoker. They have recommended radiation due to the fact that there was some perineral invasion. Wondering if anyone can give me advice and information on the radiation and the side effects. Also I am hoping to stay cancer free after radiation. Anyone else out there with the same cancer as mine?

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

rrosario21 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

Hole in palate
I had surgery for Mucoepidermoid carcinoma on my palate in 2007 which also resulted in the hole entering the nasal cavity. I had plastic surgery to try and repair the oral nasal fistula but it was not fully successful. It improved my speech but I still have the hole. Luckily for me it is fairly small and I have learned to eat and drink without having food or liquid pass through it. I never smoked either and the sad part is that I had the lump when I was 15 and it was non malignant then when I had it removed. Over the course of a few years it grew back. I felt that since it was nothing then it was not needed to be looked at. It took applying for more life insurance to get the lump rechecked at the age of 29 and to be told it was most likely cancer. Luckily it was low grade and hadn't spread. I have been cancer free for almost 2yrs now. I check my mouth frequently to make sure there are no signs of recurrence.

agrossetti said:

MEC
I was diagnosed with MEC when my twins were 6 mos old, after the oral surgeon removed a small lump from my gum. Thus it was hard for my ENT to stage my cancer, know the parameters, etc. I had radical neck dissection Oct. 2005 but no chemo or radiation. I lost sensation on half my tongue which I occasionally bite hard. And,I've had plastic surgery on my scar a few times. On a good note, I lost the baby weight and things have been good so far. I even have to laugh when I bite my tongue yelling at my 5 children. I never smoked either. I see the ENT every 6 mos now-sooner if there's anything suspicious. Take as much help with the twins as you are offered and can ask for. Anything to lighten your load as a mom of multiples will help you enjoy those babies more. My ENT is a strong believer in a positive attitude-me too. I do take my vitamins, stay active, and try to eat more veges.

mec
My experience is much the same , a mass was removed from a minor salivary gland under my tongue, no chemo or radiation. I just go for check ups every few months. Certainly the most difficult experience of my life being a young mom of 2 babies. God has been my victory through it all and I give him all praise.

My question is follow up care. How often do you get scanned and what tests? do you see a cancer specialist or stick with your ENT. I feel quite alone in all this. I am thankful to have found this site. Thanks for any replys in advance

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

My Hubby Diagnosed and just had surgery
Hi Phil....your story sounds like we have just stumbled into...found the lump in the roof of the mouth Thanksgiving and called and got it biopsied and just had it removed 23rd. What they thought was a nickle size was more like your thumb but didn't go into the nasal cavity. They have cut out a very large hole in the roof...very large. The doctor doesn't know how he'll stand it....but they tell us it will heal and fill in with maybe a graph later. We are awaiting the pathology report now and we are very anixous and just numb. Just want to know how big your tumor was and can we just handle all of this...you sound so inspiring!!!