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Mucoepidermoid Carcinoma

danielsm
Posts: 3
Joined: Mar 2006

Hi, I just found out that I have Mucoepidermoid Carcinoma of the minor salivary glands. Low Grade.It was found on the base of my tongue.I'm getting the growth removed on 4/10/06. I have this feeling like something is caught in my throat all the time. My ENT doctor said that he doesn't know why I have that feeling. He all so said that he hasn't had a case like this before because it's rare. Has anyone out there had anything like this? Maybe you could let me know how you made out. Thank You, Marc

Monika1210
Posts: 3
Joined: May 2006

Hey Marc, Hope all went well with your surgery. I had a mucoepidermoid carcinoma of the parotid at age 17 in 1978. So far, so good! I did have an unrelated tumor type on my left clavicle at age 20, but have been cancer-free since 1981. Good luck. Monika

jaylene19's picture
jaylene19
Posts: 9
Joined: Oct 2002

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!

mc12094
Posts: 1
Joined: Jan 2009

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
Posts: 3
Joined: Mar 2009

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

jkbrew
Posts: 8
Joined: Aug 2008

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?

saltydawg2
Posts: 3
Joined: Mar 2009

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.

jkbrew
Posts: 8
Joined: Aug 2008

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

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

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
Posts: 3
Joined: Mar 2009

Hi Roxie, I did have some numbness after my initial surgery that removed the tumor. It went away pretty quickly though. After my second surgery which removed a portion of my hard palette and bone that used to hold my teeth I really have had no numbness in this area with the exception of just after the surgery. I can't really say if this is normal in your case or not..sorry...Phil

braymack
Posts: 7
Joined: Oct 2009

I had surgery nearly 2 years ago and still feel some occasional numbness on the left side of my palate where I had low grade mucoepidermoid carcinoma. The tissue has never felt the same. I have had surgery 5 times in the area though. Twice for a biopsy and surgery of a non malignant tumor 15yrs ago and twice for a malignant tumor in Oct07/Jan08. I then had plastic surgery to repair an oral nasal fistula that developed after the Jan. surgery done in Oct. 08. I had the tumor in pretty much the same spot as you. Hopefully your numbness has gone away.

Anxious Kathy
Posts: 21
Joined: Dec 2009

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!!!

FamilyForce5's picture
FamilyForce5
Posts: 7
Joined: Dec 2009

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.

CaKat
Posts: 28
Joined: Dec 2011

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!

seesaw
Posts: 15
Joined: Sep 2010

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?

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

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.

Robinr01
Posts: 2
Joined: Mar 2011

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's picture
ekdennie
Posts: 231
Joined: Aug 2010

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!

Alli
Posts: 2
Joined: Aug 2012

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.

jkbrew
Posts: 8
Joined: Aug 2008

Hi, my guess is that your daughter has had surgery and possibly chemo and radiation. How is she doing? I am a 40 year old mother of 3 (15, 10, 8). I completed everything December 31, 2008. It is a long, long journey. I'm home from work today, because of side effects. I thought the side effects were over. I can barely speak or swallow today. When I read your post, it reminded me of my own mother. I don't know what I would've done without her. She is 62. She spent the night with me in the hospital (2 nights). She stayed with me for a week after the treatments. Week 3 (after treatments were over) was one of the worst weeks of my life. The side effects were almost too much to deal with - the pain (swallowing, talking, eating, taking pain meds, etc), weakness, helplessness. Through all of it, I've lost 30 pounds. This is okay, because I could afford to loose 30 pounds (size 16 to size 12). I refused a peg tube, because I was done with surgery. I still have a port. My scan is in a couple of weeks.

I'd love to hear from you and/or your daughter.

cjkraker
Posts: 3
Joined: Jul 2010

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.

SueBIE2
Posts: 7
Joined: Oct 2004

I had it in 1969 at age 8. This year I celebrate 37 years of survival. Hope all went well with your surgery.

cl73
Posts: 8
Joined: Jul 2012

hello SueBIE2,
my sister was recently diagnosed with a recurrence of MEC. Are you willing to share your experience?

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

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.

tonja4
Posts: 1
Joined: Jun 2009

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?

rrosario21
Posts: 1
Joined: Jun 2009

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

braymack
Posts: 7
Joined: Oct 2009

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.

Anxious Kathy
Posts: 21
Joined: Dec 2009

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?

braymack
Posts: 7
Joined: Oct 2009

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
Posts: 15
Joined: Sep 2010

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

cliff55
Posts: 1
Joined: Jan 2012

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, Cliff

agrossetti
Posts: 1
Joined: Jul 2009

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.

blessedabundantly
Posts: 1
Joined: Jun 2009

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

seesaw
Posts: 15
Joined: Sep 2010

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.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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

Aurora7
Posts: 2
Joined: Jan 2010

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's picture
Scambuster
Posts: 975
Joined: Nov 2009

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

Gutb23
Posts: 1
Joined: Nov 2011

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's picture
Hondo
Posts: 5738
Joined: Apr 2009

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
Posts: 1
Joined: Dec 2011

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's picture
kingcole42005
Posts: 177
Joined: Oct 2010

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's picture
Hondo
Posts: 5738
Joined: Apr 2009

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
Posts: 1
Joined: Dec 2011

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

LB209
Posts: 2
Joined: Jan 2012

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.

matthew79
Posts: 2
Joined: Dec 2011

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
Posts: 2
Joined: Jan 2012

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.

matthew79
Posts: 2
Joined: Dec 2011

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.

Aurora7
Posts: 2
Joined: Jan 2010

Hi there!
Sorry didn't realise you guys replied.
I had the lower lobe of my right lung removed. Thank fully no chemo or radiotherapy was needed and 12 years on I've been clear.

How is everyone else doing?

Aurora

ritikparikh
Posts: 1
Joined: May 2013

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

CivilMatt's picture
CivilMatt
Posts: 2927
Joined: May 2012

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

TracyLynn72's picture
TracyLynn72
Posts: 680
Joined: May 2013

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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