If there is anyone with this type of cancer, please contact me. My mom was just diagnosed stage II.
Last October('00) I went in for surgery on a tumor deemed benign. After the surgery my Dr. informed me that it was malignant after all. It was Mucoepidermal carcinoma. Since you wrote this message in Jan. you may already know that there is a good prognonsis for this cancer. It is low grade which means it isn't likely to spread. I underwent radiation to kill any remaining cells left after the surgery. So far everything is just fine. I encourage you and your mother to have a positive outlook.
MY FRIEND WAS JUST DIAGNOSED WITH ADENOID CYSTIC CARCINOMA OF THE PAROTID GLAND, WHICH IS A MAJOR SALIVARY GLAND. I'M NOT SURE IF THIS IS THE SAME TYPE OR CLASSIFICATION. THERE IS A TREATMENT CENTER IN WASHINGTON AND CHICAGO THAT USE NEUTRON BEAM THERAPY. I'M NOT EXACTLY SURE WHAT THIS MEANS, I'M ASSUMING THAT IT IS A HIGHLY ACTIVE AND POWERFUL BEAM THAT IS ACCURATELY CONTROLLABLE. THEY HAVE HAD 100% SUCCESS RATE IN LOCALIZING THE TUMOR WITH 100% SURVIVAL RATE OF THE PATIENT.
My partner (age 49) was diagnosed with stage IV mucoepidermoid carcinoma of the parotid gland in early january. He had been under "oberservation" with an ENT for several months before the ENT decided to remove the "these are hardly ever malignant" tumor. It was then that the malignancy was discovered. The ENT never even bothered to do a needle biopsy, even though one was suggested in October. Needless to say, by the time he saw an oncologist the cancer had spread to the facial nerve, surrounding tissue, jaw and mastoid. We saw further surgery as the most comprehesive and aggressive way to treat his cancer. The parotid gland, tissue, facial nerve, jaw joint, part of mastoid and were all removed in a 12.5 hour surgery. Fortunately, the cancer did not spread to the lymph nodes or brain. Unfortunately, the cancer cells were still present. Since this was a fast growing, invasive cancer in him, the surgery was followed by 5 weeks of photon radiation and three weeks of neutron radiation. He will begin chemotherapy in two weeks. He has gotton through the radiation well, just suffering some burns, a case of thrush, and fatigue. He is on a diet high in soy
protein and is also taking a glutomine supplement. He will continue this diet throughout chemotherpy. It was not a difficult decision to sacrifice the facial nerve to remove the cancer. He has a way to go, and is keeping his spirits up. Please be persistant and aggressive with your doctors, the only reason he finally had the surgery was due to his constant complaining to the ENT. The prayers, thoughts and well wishes of friends and stranger have gotten us this far. I would like to hear from others in similar situations. My thoughts and prayers are with all of you.
I was thought to have had an infection of the maxilary sinus, then mustache infection and finally they thought the tumor was a cyst. Surgery proved after one positive biopsy and one false negative (never trust a negative biopsy) that I had high grade mucoepidermoid of the upper lip. That was in 1997. I lost my nose in 2000 and 4 teeth and part of my pallette in 2002. I was told that MC wants to migrate to the lungs, so they are probably taking chest xrays to see if it will make the jump. Mine never did and they think because it hasn't by now, that it probably will not. If you want to know more or communicate further with me, you may reach me at Rhinonixx@aol.com
Hope to hear from you,
I just completed neutron therapy in Chicago and it was a great experience for me. I was able to finish with 12 treatments in 4 weeks instead of 30 treatments in 6 weeks with standard radiation. The side effects are similar to standard radiation. They specialize in rare cancers, especially of the salivary gland.
There website is www.neutrontherapy.niu.edu.
I am 54 and have been playing with this cancer since 1997. If you would like to communicate with me, I can also be reached at Rhinonixx@aol.com.
Hope you mother is doing fine. I was diagnosed 7 years ago and as you can see, am still around. Hope to hear from you.
I was diagnosed with this cancer (low grade) on December 7th of 2006. On December 14th I underwent surgery and had it removed. Lucky for me they removed it all and I didn't have to undergo Chemo or radiation. It has only been a few months, but I am so thankful to the Docs at U of M in Ann Arbor. I'm 36 with a 2 and a 4 year old, and I wasn't about to leave them. I do have to wear what they call an obturator. It is basically a retainer that is extra long. They had to remove my whole soft palate, including my uvula (that dangly thing that hangs in the back of your mouth). I talk more nasally than I did before, and I had to get a tube put in one ear because my eardrum collapsed with the lack of musculature left. They can do reconstructive surgery by taking skin from my wrist so I'm considering that. The price is pretty steep, but I'd like to go back to teaching once both of my kids are in school so I'll need to talk a little better. This may sound grim, but I'm actually happy with the results. This cancer is NOT a death sentence if it's Low Grade like I had. Please email me if you have any questions. I'd be happy to try to help.
Hi kosshan, I dont know if you are still using this website at all but I would be interested talking to you. We have very similar situations, but you have been there for a longer time. Thanks.
No reply from you. Good to know you survived MEC of salivary gland. Please let me know which part was affected- soft palate or hard palate? And you didnt have radiation or chemotherapy. I am intersted because my 20yr old daughter was diagnosed with MEC of hard palate and surgically treated in Oct 2009. No radio or chemo was advised. By God's grace she is Ok now. But I am afraid it may come back or spread to other tissues far away.
Please reassure me that it's gone forever.
I was diagnosed with MEC in 1998; had surgery and I havent had any more problems. It started with a small area in the top of my mouth about the size of a dime and there was no pain ever. I lost a few teeth in the top and I'm still here. I am thankful today that I can say I'm cancer-free. I would love to have my mouth fixed with a new set of teeth tho so I can smile again like I use too. Keep the faith I'll be praying for you and the family. God bless
My daughter was just operated on for this type of cancer. She was in stage 2. Did your mother get sick from the radiation treatments? How is she now?
sorry to hear about your daughter. i just recovered from MEC of the parotid gland. i had it surgically removed but they felt it was necessary to do radiation as well. i had 7 weeks of radiation 5x a week to the neck area. the radiation doesnt make you sick, but it does make you feel like crap. it'll blast your taste buds so i didnt feel like eating anything because i couldn't taste anything. my neck was burnt and my mouth was dry. they also put an uncomfortable face mask to keep your head still in the machine. but, all in all, it worked and i'm thankful for it. i hope your daughter fairs the treatment well and that it works for her. let me know if you have other questions.
Hi, I was just diagnosed with MEC today and it is quite upsetting. I have a lot of questions like what kind of doctor did you surgery? Was it a ENT doctor, oral surgeon, cancer doctor? Is there doctors that specialize in MEC? Any info would be appreciated.
I was diagnosed in late June and I had surgery August 10, 2010. I have been seen by both an oral surgeon and an ENT. After some discussion between my doctors and my dentists, they decided that the ENT was the one to perform the surgery. My mucoepidermoid carcinoma (MEC) was on my palate and had grown into my nasal cavities. I have not heard of any doctors who specialize in it. There are a couple of locations that have Head and Neck specialists though. MD Anderson in Houston is supposed to be great. I chose to stay with my local ENT here in OKC, OK. I asked every doctor I know who they would send their families to, and they all told me the same name. He did a great job, and although my surgery location is large, it isn't from anything he did, but rather from the years that I had this tumor when my dentist just thought it was a boney growth.
What level of MEC do you have? Low, Intermediate, or High Grade? Mine was believed to be Low Grade when I went in for surgery, but the final path results indicated that a portion of my tumor was Intermediate, so I am preparing for radiation in the next couple of weeks.
I understand about being upset...hearing you have cancer is hard, but try to stay positive...you will heal faster if you stay optimistic! Let me know if you have any specific questions. I am still new to this, but I have read everything I can, and I have asked dozens of questions.
Hi: I was treated for MEC (low-grade, stage I). I was diagnosed in June and had surgery by an Oral surgeon on August 8. I now have to decide whether or not to have radiation. I have had a second opinion from an oncologist who says I should not have radiation because the excisional margins of my tumor were clean, although one side of the tumor's margin was very close to bone of the hard palate. Would be interested in any information from MEC survivors.
Dear monniw or anyone with comment:
I just had the mask fitted and am waiting on the date to begin radiation for low grade stage 1 MEC. I am very frightened about the side effects from radiation. They want to also do the lymph nodes. Would like to know how you are recovering from these side effects of the radiation. I have had surgery to remove the tumor, but mine was located in the bridge of both the soft and hard palate and even though they got clean margins and the surgeon thought radiation was not necessary, the radiation oncologist decided I should have radiation to the neck and lymph nodes to prevent recurrence and spread to the lymph nodes and lungs. What seemed like something they were just going to remove and be done with has turned out to be a major life-altering treatment. Now I am very concerned about my quality of life. Also has anyone experienced lymphedema from radiation?
I had the same cancer and thought that it was an absess tooth. I went to the dentist and he said there wasn't anything wrong with the tooth and he sent me to an oral surgeon. Oral surgeon found it in my sinus too. Long story short it was cancer. Ended up having 4 hr surgery from ent. Oncologist suggested radiation because it touched the bone. Went with their suggestion because I was scared. radiation sucked. I had the mask. The first time of radiation they used the wrong head rest so it was very painful and I had to keep making them stopped and they were getting upset with me and I was upset because I was scared I wouldn't beable to do it and the cancer would come back. Then they figured out it was the wrong head rest. I ended up not beable to eat hardly anything and lost a bunch of weight. I got sick the last couple of weeks. I would try to get sick before I left for radiation because I was afraid of getting sick in the mask. I got sick on the table once and they wanted to reschedule me. I said no you can wait because I was not adding one more day onto my treatment. To this day I still have a hard time opening my mouth very wide because of the radiation. I also have a lot of pain still some days because of it. It ages your skin where they do most of the radiation. You need to use vitamin E and eucerin while going through the radiation to keep your skin soft. If I new all of these side affects I don't know if I would have gone through radiation. I have to wear a mouth piece called a opterator because I have a hole from the roof of my mouth going to my sinus where they did the surgery. Not to scare you but I just wish that I had known all of this before. My husband was awesome because he made me go for walks all the time during radiation. Slow and short was but it helps with the spirit. I had no energy and lost ton of muscle from not being able to eat. Please contact me if you need more information.
What was the stage, grade of your cancer and did you have a clear margin next to the bone or did the tumor sit right next to the bone?
my tumor grew into my sinuses as well. I have an obturator as well and I am going through radiation right now. 20 down 10 or so to go.
how long ago was your tumor discovered and when did you have it removed? I am sorry to hear that it is still hard to open your mouth and that you had such a rough time with radiation and the mask. sending you a hug from someone who is going through it right now.
How s your daughter now. My daughter had this Mucoepidermoid of hard palate and operated in 2009. But radiotherapy not advised. Now she is OK, but I have my fears. What about your daughter?
This particular forum sure doesn't get many people in it. I was just browsing around after reading the posts in the Head & Neck section. Most of the MEC folks are there.
I had noticed a lump on my right neck almost a year before being diagnosed. Just figured it was a swollen gland due to my sinus problem. Went to four different doctors in those early months and they all said not to worry about the lump. It will go away on its own.
My wife and I moved to NV last summer and my sinus infection roared its ugly head. That was the reason for seeing so many Dr's before, they just couldn't cure it. Had to find a new ENT who would see me right away and found only one. She put me on very strong antibiotics and was told to return in 10 days. She too was shown the swollen gland and dismissed it until my followup appt. The infection was gone but the lump was still there. She scoped me and found a 2.8mm tumor on the base of my tongue. She could not believe that I couldn't feel it. Later I was told it was common not to feel a MEC tumor. She thought I had Lymphoma and I was scheduled for a biopsy. That's when the diagnosis came back as Mucoepidermoid Carcinoma. Very rare I was told. She referred me to the best Head and Neck surgeon in town, along with an Oral Surgeon and a Radiation Oncologist. That was in Oct of '11. Had a partial tongue removal in Nov and that was the worst pain I've ever felt in my life. Could not swallow even water. Lost about 6-8 lbs before it healed enough for me to eat soft foods. (5-6 weeks)
Dec was a healing month and then I had a radical neck dissection Jan 7,2011. Two lymph nodes were positive and around 45-60 nodes were removed. I still have numbness and arm/shoulder pain from stretching the nerve so much. PET scan before it showed cancer of the tongue and lymph node. T2N2M0 Low grade MEC with clearly defined margins. That meant no Chemo was needed, only Radiation. Six weeks after the last surgery I started low dose radiation therapy. Very grateful for the low dose. (30 sessions)
I am now five weeks post radiation and still have throat sores and arm pain, but overall I am so lucky to have had the low grade version. So now I am considered a Cancer Survivor. My next PET will be in five months.
There are a couple of pics of my neck and the radiation machine on the expressions page in my profile. Just click my pic if you're curious.