Mucoepidermoid Carcinoma

FamilyForce5

Anxious Kathy said:

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!!!

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.

Aurora7

Mucoepidermoid carcinoma of the lung
Hi all. My name is Aurora and Im so glad that I found this site.

I was diagnosed with this on my lung 10 years ago at the age of 16. Back then I never really understood the whole thing of how it happened etc. Now reading materials online has given me a sense of relief to know. Has anyone had any other syptoms or side effects from the cancer? The symptoms that I had where shortness of breath and pneumonia. Mine was also wrapped around my esophagus also. I went in for a 2nd operation a week after the removal of it to remove my lymph nodes and they were clear. It has been hard for me as when I was told about it, the doctors didnt know what they were dealing with and didnt find out until after the operation. If anyone out there has had a similar experience please let me know. I want some closure.
Aurora

Scambuster

Aurora7 said:

Mucoepidermoid carcinoma of the lung
Hi all. My name is Aurora and Im so glad that I found this site.

I was diagnosed with this on my lung 10 years ago at the age of 16. Back then I never really understood the whole thing of how it happened etc. Now reading materials online has given me a sense of relief to know. Has anyone had any other syptoms or side effects from the cancer? The symptoms that I had where shortness of breath and pneumonia. Mine was also wrapped around my esophagus also. I went in for a 2nd operation a week after the removal of it to remove my lymph nodes and they were clear. It has been hard for me as when I was told about it, the doctors didnt know what they were dealing with and didnt find out until after the operation. If anyone out there has had a similar experience please let me know. I want some closure.
Aurora

Post a new Thread
HI Aurora,

May I suggest you post your question as a new thread. I think you will increase chances of response as this is a very old thread.

Sounds like you are long term survivor which is nice to hear.

All the best.

Scambuster

braymack

Anxious Kathy said:

roof of mouth tumor
My sweet husband found a lump about he size of a nickle and it didn't hurt. We went right to the doctor and it was cancer. They have removed the tumor and he has a very large hole in the roof of his mouth. Surgery was just last week so we are dealing with all the post surgical right now and much much pain. The tumor was quite large and we are awaiting the pathology report. I'm trying to learn more about this and how bad these are....you have obviously lived with this on and off for several years. any comments on what to expect?

I have learned to just live
I have learned to just live with it one day at a time. I examine my mouth often for any changes. I fortunately have not experienced much pain with it. Following the surgery there was slight pain but nothing Advil didn't cover. I was told by my oral surgeon that I have low grade Mucoepidermoid Carcinoma and that the survival rate is very high. I still have occasional tenderness in the surgical area, but only when touched. I see my surgeon for a follow up in the next few months and hope to hear that I am 2+yrs cancer free. I hope that you get good results and that it is low grade. All the best.

seesaw

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

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?

seesaw

luckyfl said:

Carcinoma
Hi Marc, my situation is olmost like yours except diferent part in the mouth ,but mine is adenocarcinoma low grade in the minor salivary gland soft palate.I have my surgery already were they removed a piece of my soft posterior palate ,and waiting for complete cover to start my radiation to prevent future surprises.
I can tell you that, this is a great place to be now and later after your surgery ,also thank God like me that it were discover on time and not stage 3 or 4 carcinoma.Stay here and you will find all the anwsers you need ,too bad i don't find this website before my surgery just joined 3 days ago .
Well good luck and keep posted how you did after surgery.

I am interested to know how
I am interested to know how you are doing. My cancer is in hte exact area. I have had surgery and waiting to start radiation. I am really afraid of the side effects.

ekdennie

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?

Radiation
I had surgery to remove a Mucoepidermoid Carcinoma from my palate on August 10, 2010. The tumor had grown into my nasal cavities. My first biopsy said it was low grade, but post surgery they told me it was Intermediate grade. I had very clear margins, however, as a precaution I will also be undergoing radiation in a couple of weeks. I will be having IMRT radiation to help minimize side effects. I am some what scared of the side effects, too. However, I am only 31 years old...and I have three very young children. I have decided to view my tumor as an unwanted tenant, and my surgery as an eviction. The tumor is gone, but there is no way for me to know what "mess" the tumor left behind. I am viewing the radiation as a deep clean, just like you would do if someone made a big mess in your home.
Radiation is the correct choice for me, but it may not be for everyone.
I wish you much luck with whichever choice you make. If you do chose radiation, make sure you check into all options of treatment in your area...it made me feel better when I asked all my questions and was told all of my options.
Best of luck to you...tell your dr your concerns about the side effects...they can help you address what worries you.

Scambuster

seesaw said:

I am interested to know how
I am interested to know how you are doing. My cancer is in hte exact area. I have had surgery and waiting to start radiation. I am really afraid of the side effects.

Start new thread
Hi Seesaw, please note you have posted on quite an old thread. You might be best to start a new thread and post your topic with some details about your diagnosis, surgery etc and you should get people on with similar experience who can offer advice etc.

Regds
Scam

seesaw

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

MEC
Wondering how you are doing? I have the option for radiation but still waiting on a third opinion.

Robinr01

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?

Just had my second surgery
I was diagnosed in October 2010 with low grade mucoepidermoid carcinoma- located on my soft palate. I had surgery on Dec 2nd to remove the tumor. My ENT told me at that time that radiation is not advised for this type of cancer. In my case, my exposure to radiation during my military career is most likely what caused my cancer. He also said that the side effects of chemo greatly outweigh any benefits. I am receiving neither, and without the advice, it is not likely that I would have chosen either. My margins also came out clean. I do have a hole in the roof of my mouth that joins my nasal cavity. I was fitted for a prosthesis, but I wish I had received some advice before doing that. My mouth changed to quickly that the prosthesis only fit for a few days before it needed to be reshaped. I only wore mine for 4 days, had it reshaped twice, and realized it wasn't worth the hastle. I have lost 25 pounds to date though, but my overall health is great.
I went in on the 23rd of February and had another surgery to close the hole. Skin was grafted from the roof of my mouth behind my front teeth and all the way to the defect. So far, the graft is working, but I do notice a very small amount of air escaping to my nasal cavity. I have called my ENT and hopefully it's something that a stitch or 2 can fix.
My ongoing care with my ENT will be for every 6 weeks for at least 2 years to make sure there is no reoccurence.

ekdennie

Robinr01 said:

Just had my second surgery
I was diagnosed in October 2010 with low grade mucoepidermoid carcinoma- located on my soft palate. I had surgery on Dec 2nd to remove the tumor. My ENT told me at that time that radiation is not advised for this type of cancer. In my case, my exposure to radiation during my military career is most likely what caused my cancer. He also said that the side effects of chemo greatly outweigh any benefits. I am receiving neither, and without the advice, it is not likely that I would have chosen either. My margins also came out clean. I do have a hole in the roof of my mouth that joins my nasal cavity. I was fitted for a prosthesis, but I wish I had received some advice before doing that. My mouth changed to quickly that the prosthesis only fit for a few days before it needed to be reshaped. I only wore mine for 4 days, had it reshaped twice, and realized it wasn't worth the hastle. I have lost 25 pounds to date though, but my overall health is great.
I went in on the 23rd of February and had another surgery to close the hole. Skin was grafted from the roof of my mouth behind my front teeth and all the way to the defect. So far, the graft is working, but I do notice a very small amount of air escaping to my nasal cavity. I have called my ENT and hopefully it's something that a stitch or 2 can fix.
My ongoing care with my ENT will be for every 6 weeks for at least 2 years to make sure there is no reoccurence.

radiation
yeah, radiation and chemo are not recommended when it is low grade. mine was intermediate grade...it is recommended when it is either intermediate or high grade. chemo is recommended for high grade in addition to radiation. surgery is the recommended first course when possible for all grades.
I too have had all sorts of changes with my mouth even with the prothesis. I have been advised that my hole is too large to close. I too have regular visits scheduled with my ENT for the next 5 years.
good luck with your graft...I hope it works well for you!

cjkraker

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!

Mucoepidermoid Carcinoma
Your faith in God is wonderful. My husband has had his parotid gland removed due to this type of cancer and all of his facial nerves. This was done in May of 2010. He had 35 treatments of radiation and his nerves have all been growing back very well. He is just able to blink his eye again and open his mouth wide enough to eat bread. I am at the OSU James Hospital right now because he had a reaccurence on his neck,same side. They removes 62 of his lymph nodes (28 of them last operation.) They were going to do intraopertive radiation but didn't feel it was needed. We have gotten excellent care here and hope that we don't have to go through this again but also could not have gotten through without faith in a great God. The PET Scan showed that there was a 50/50 chance that there was cancer by his lungs but after many prayers were sent up, God sent us a miracle and answered our prayers.

Gutb23

Aurora7 said:

Mucoepidermoid carcinoma of the lung
Hi all. My name is Aurora and Im so glad that I found this site.

I was diagnosed with this on my lung 10 years ago at the age of 16. Back then I never really understood the whole thing of how it happened etc. Now reading materials online has given me a sense of relief to know. Has anyone had any other syptoms or side effects from the cancer? The symptoms that I had where shortness of breath and pneumonia. Mine was also wrapped around my esophagus also. I went in for a 2nd operation a week after the removal of it to remove my lymph nodes and they were clear. It has been hard for me as when I was told about it, the doctors didnt know what they were dealing with and didnt find out until after the operation. If anyone out there has had a similar experience please let me know. I want some closure.
Aurora

Mucoepidermoid carinoma of the lung
Hi Aurora, I was pretty interested in reading this because my daughter was diagnosed with this the end of 2005 and had her surgery Jan. 2006 at the age of 4. She was sick a lot prior to being diagnosed and we kept hearing that she had pnemonia. She has been cancer free and doing well since the surgery with shortness of breath being her only symptom and that only happened for about a month after. Did they they remove your whole lung or just a portion? My daughter had two lobes of the right lung removed and they removed lymph nodes during her surgery, like yours, hers were clear. How have things been going for you since then?

Bobbi

Hondo

Gutb23 said:

Mucoepidermoid carinoma of the lung
Hi Aurora, I was pretty interested in reading this because my daughter was diagnosed with this the end of 2005 and had her surgery Jan. 2006 at the age of 4. She was sick a lot prior to being diagnosed and we kept hearing that she had pnemonia. She has been cancer free and doing well since the surgery with shortness of breath being her only symptom and that only happened for about a month after. Did they they remove your whole lung or just a portion? My daughter had two lobes of the right lung removed and they removed lymph nodes during her surgery, like yours, hers were clear. How have things been going for you since then?

Bobbi

Hi Gutb
Welcome my friend to CSN, you are on the Head & Neck cancer site and more then likely can get better help on the Lung Cancer site. Just go to the CSN Home and it will let you navigate to the Lung site. I am there as well because of problems in my Lungs.

Wishing you the best in care for your daughter
:+)}
╠╣ONDO

nfc1971

Hondo said:

Hi Gutb
Welcome my friend to CSN, you are on the Head & Neck cancer site and more then likely can get better help on the Lung Cancer site. Just go to the CSN Home and it will let you navigate to the Lung site. I am there as well because of problems in my Lungs.

Wishing you the best in care for your daughter
:+)}
╠╣ONDO

Just recently Diagnosed
My name is Norman, I am 40 years old and have just been diagnosed with Invasive Mucoepidermoid Carcinoma. It is low grade and wanted some support some answers. I am going to see a specialists tomorrow in Miami, FL.

What can I expect? Do you think I will need radiation. When I read romoval of the mandible or jaw, do they replace it? I am so scared. I have 2 small children.

kingcole42005

nfc1971 said:

Just recently Diagnosed
My name is Norman, I am 40 years old and have just been diagnosed with Invasive Mucoepidermoid Carcinoma. It is low grade and wanted some support some answers. I am going to see a specialists tomorrow in Miami, FL.

What can I expect? Do you think I will need radiation. When I read romoval of the mandible or jaw, do they replace it? I am so scared. I have 2 small children.

Hi Norman
I would post a new thread for this. It was originally started in 06, so to get more responses you might want to try that. You don't give much info on where your tumor is located and what type of treatment your onco's are suggesting. I had mucoepidermoid carcinoma of my submandibular salivary gland. They removed the whole left floor of my mouth, lost a tooth, the nerve to the left side of my tongue and some facial nerve damage. Also had lymph nodes removed all clear. Mine was high grade so I did have to have radiation. Radiation was the hardest for me. I know, it is so very scary. I'm sorry your scared. But once you go through it and come out the other side it does get easier. Give us more info on a new thread and I'm sure you'll be flooded with advice. Take care, Shelly

Hondo

nfc1971 said:

Just recently Diagnosed
My name is Norman, I am 40 years old and have just been diagnosed with Invasive Mucoepidermoid Carcinoma. It is low grade and wanted some support some answers. I am going to see a specialists tomorrow in Miami, FL.

What can I expect? Do you think I will need radiation. When I read romoval of the mandible or jaw, do they replace it? I am so scared. I have 2 small children.

Hi Norman

So sorry to hear this but you are in the right place for help, there are a lot of others who had to have the Jaw replaced and they can give you a lot better help then I can. Do like Shelly said start a new Post on the subject, that way a lot of others will respond to your need.

Wishing you the best and Welcome to CSN
Hondo

Rocky7423

nfc1971 said:

Just recently Diagnosed
My name is Norman, I am 40 years old and have just been diagnosed with Invasive Mucoepidermoid Carcinoma. It is low grade and wanted some support some answers. I am going to see a specialists tomorrow in Miami, FL.

What can I expect? Do you think I will need radiation. When I read romoval of the mandible or jaw, do they replace it? I am so scared. I have 2 small children.

Been there recently
I was diagnosed in May. It was in my lower left side under my lip. I was told emmediatly it needed to be cut out but I went another route instead. I had radiation and it grew back with in weeks. I just had surgery two months ago. They removed part of my lip and the nodes from my neck. I am 37 and i have two teenege boys. I know what you are going through.
Raquel

matthew79

Aurora7 said:

Mucoepidermoid carcinoma of the lung
Hi all. My name is Aurora and Im so glad that I found this site.

I was diagnosed with this on my lung 10 years ago at the age of 16. Back then I never really understood the whole thing of how it happened etc. Now reading materials online has given me a sense of relief to know. Has anyone had any other syptoms or side effects from the cancer? The symptoms that I had where shortness of breath and pneumonia. Mine was also wrapped around my esophagus also. I went in for a 2nd operation a week after the removal of it to remove my lymph nodes and they were clear. It has been hard for me as when I was told about it, the doctors didnt know what they were dealing with and didnt find out until after the operation. If anyone out there has had a similar experience please let me know. I want some closure.
Aurora

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.

LB209

Gutb23 said:

Mucoepidermoid carinoma of the lung
Hi Aurora, I was pretty interested in reading this because my daughter was diagnosed with this the end of 2005 and had her surgery Jan. 2006 at the age of 4. She was sick a lot prior to being diagnosed and we kept hearing that she had pnemonia. She has been cancer free and doing well since the surgery with shortness of breath being her only symptom and that only happened for about a month after. Did they they remove your whole lung or just a portion? My daughter had two lobes of the right lung removed and they removed lymph nodes during her surgery, like yours, hers were clear. How have things been going for you since then?

Bobbi

Bobbi
Very interested in hearing from you. My husband just had his middle and lower lobes of his right lung removed on December 7, 2011, from mucoepidermoid carcinoma. He is 60. They say this is very rare to be in the lung and also for his age. We are now contemplating 4 rounds of chemo. Did your daughter have chemo? We are struggling with this decision right now. Trying to find more info on this type of cancer to see how slow/fast it progresses, etc.
I would love to visit with you about this. My email address is lindab1833@yahoo.com if you would prefer it to this site. Thank you. Hoping and praying your daughter is doing well.