mucoepidermoid carcinima

Hi Shelby
I actually did not have the same type of cancer, but there are a few here that have. Ekdennie, Nkimber and Kingcole, I think, and there was a gentleman too, but I cannot remember who. If they don't catch this thread, you can look up their names and maybe send them a personal message.

Sorry to hear that you are going through this, you are so young! There are a lot of good people here, and a lot of good info with that great support. I do wish you the best.

I'm so sorry for your diagnosis.
I'm so sorry for your diagnosis. I was diagnosed with mucoepidermoid carcinoma last October. I was absolutely terrified. Mine was located in the floor of my mouth on the left side and had no nodal involvment. Radiation is done, but am still feeling the side effects. The main therapies for this type of cancer is surgery then radiation. If it has spread to other areas then chemo most likely will be introduced. Make sure you find a Comprehensive Cancer Center. Ask your ENT if there is one near you. I live in California and have access to one of the best doctors for head and neck cancer at UCSF, Dr. Eisele. You are going to need tons of support from friends and family. Take good care of yourself, eat right, get a massage, excercise. I'm sorry you have to go through this, it really does suck. Sending you lots of hugs! Shelly

mucoepidermoid Carcinoma
shelbydluge,
welcome to this site, sorry you had to find yourself here, but I am glad that you were able to find us. there are a lot of people on this site who can help you along the way.
I am going to give you fair warning....I am going to write a lot of info here!
I am 31 years old and the mother of three kids (they were 4, 2, and 4months at the time of my diagnosis).I was diagnosed with Mucoepidermoid Carcinoma of the hard palate June 30, 2010. It had grown into my maxillary sinus cavity as well. I had surgery in August to remove a golfball sized tumor. I now have a hole in the roof of my mouth and I wear a prosthetic, called a obturator so that I can talk more normally and so that less liquids and foods go into my sinus cavity.
I was initially told that my tumor was low grade, but post surgery it was moved up to intermediate grade clear cell variety. In October I began 6 weeks of IMRT (intensity modulated radiation therapy). There were some rough side effects, such as sores, and radiation burns, but I handled them pretty well with proper medication, rest, and nutrition. eating was hard, so I drank high protein boost and a product called scandishake. I finished radiation in the middle of November and I am now able to eat most foods, but I have to be careful with food with hard edges, spicy food, or foods that are too hot...warm, soft, non-spicy foods work best. I had some damage to my taste buds, but they are starting to come back...it just takes patience.

some basics about Mucoepidermoid Carcinoma (MEC).
It can occur in anyone regardless of age. It is a rare tumor. you will not find very many people on here who are currently going through treatment, or even who have recently gone through treatment. Nkimber, kingcole, myself and LTRII are on here right now. there are no risk factors for it. I am a non smoker, occasional drinker, I eat well. I was a little overweight before treatment, but I am in a normal range now. (I lost 20 lbs with surgery...10 of which I gained before surgery by eating every food I loved...and I lost another 20-25 lbs due to radiation).
Some of the tests that are usually run include, a CT and a PET scan. the CT will show just how big the tumor is, or if any is left, and the PET scan will show if it has spread to any other part of your body. if they see any signs that it might be in your lymph nodes, they will often remove all of the lymph nodes on that side of your neck or since you are young they might do radiation to those lymph nodes.
with MEC the best results occur in people who have surgery followed by radiation. in some cases they will also do chemotherapy, particularly if there is spread.
my tumor was designated as T2N0M0...the T2 describes the size of the tumor and the grade, the N0 means that no lymph nodes were involved, and the M0 means that there was no spread or metastasis. I presented as stage IV clinically (or before surgery, based on size and how it was pressing on bone), but was downgraded to stage II after the pathology as it had not yet invaded my bones or nerves.

It is important that you trust your doctors, so if you don't like what they tell you, get a second opinion. faith and or trust in your doctor makes this whole process easier. you need to be focused on healing, not in dealing with if your doctor is the right one....deal with that now, and then trust them. make lists of any and all questions you have and don't leave until you get an answer that makes sense...make sure that if you want to have children in the future that you let them know that you need them to protect your fertility. ask if your treatments will cause any long term fertility issues. mine did not, but as I would like to have another child, I wanted to make sure that it would still be possible post treatment. I also made sure that it would be okay to have children post cancer...it is. in general I was told that with the exception of certain chemo drugs (which I never needed) that your fertility shouldn't be affected by the treatments.

Try to stay positive...it really helps in the healing process. You have a rough journey in front of you, but if you look at it as being just like if you had a cold or a broken bone...you get a cold or break a bone, you see the proper doctor, you take your medication, and you heal to get better. that was how I looked at my cancer...it was just something that I had to get out...almost like I was evicting it from my body and then the radiation was a deep clean to insure that the "tenant" (the tumor) didn't leave any friends behind! it takes time and there is a lot of down time while waiting for results and treatment plans, but it important that they get your treatment right.

you will be in my thoughts and prayers. and because we all need one from time to time...a HUGE HUG is coming your way!
elizabeth
p.s. feel free to write me if you have any questions. I am not on all the time, but I will answer when I am on!

ekdennie said:

mucoepidermoid Carcinoma
shelbydluge,
welcome to this site, sorry you had to find yourself here, but I am glad that you were able to find us. there are a lot of people on this site who can help you along the way.
I am going to give you fair warning....I am going to write a lot of info here!
I am 31 years old and the mother of three kids (they were 4, 2, and 4months at the time of my diagnosis).I was diagnosed with Mucoepidermoid Carcinoma of the hard palate June 30, 2010. It had grown into my maxillary sinus cavity as well. I had surgery in August to remove a golfball sized tumor. I now have a hole in the roof of my mouth and I wear a prosthetic, called a obturator so that I can talk more normally and so that less liquids and foods go into my sinus cavity.
I was initially told that my tumor was low grade, but post surgery it was moved up to intermediate grade clear cell variety. In October I began 6 weeks of IMRT (intensity modulated radiation therapy). There were some rough side effects, such as sores, and radiation burns, but I handled them pretty well with proper medication, rest, and nutrition. eating was hard, so I drank high protein boost and a product called scandishake. I finished radiation in the middle of November and I am now able to eat most foods, but I have to be careful with food with hard edges, spicy food, or foods that are too hot...warm, soft, non-spicy foods work best. I had some damage to my taste buds, but they are starting to come back...it just takes patience.

some basics about Mucoepidermoid Carcinoma (MEC).
It can occur in anyone regardless of age. It is a rare tumor. you will not find very many people on here who are currently going through treatment, or even who have recently gone through treatment. Nkimber, kingcole, myself and LTRII are on here right now. there are no risk factors for it. I am a non smoker, occasional drinker, I eat well. I was a little overweight before treatment, but I am in a normal range now. (I lost 20 lbs with surgery...10 of which I gained before surgery by eating every food I loved...and I lost another 20-25 lbs due to radiation).
Some of the tests that are usually run include, a CT and a PET scan. the CT will show just how big the tumor is, or if any is left, and the PET scan will show if it has spread to any other part of your body. if they see any signs that it might be in your lymph nodes, they will often remove all of the lymph nodes on that side of your neck or since you are young they might do radiation to those lymph nodes.
with MEC the best results occur in people who have surgery followed by radiation. in some cases they will also do chemotherapy, particularly if there is spread.
my tumor was designated as T2N0M0...the T2 describes the size of the tumor and the grade, the N0 means that no lymph nodes were involved, and the M0 means that there was no spread or metastasis. I presented as stage IV clinically (or before surgery, based on size and how it was pressing on bone), but was downgraded to stage II after the pathology as it had not yet invaded my bones or nerves.

It is important that you trust your doctors, so if you don't like what they tell you, get a second opinion. faith and or trust in your doctor makes this whole process easier. you need to be focused on healing, not in dealing with if your doctor is the right one....deal with that now, and then trust them. make lists of any and all questions you have and don't leave until you get an answer that makes sense...make sure that if you want to have children in the future that you let them know that you need them to protect your fertility. ask if your treatments will cause any long term fertility issues. mine did not, but as I would like to have another child, I wanted to make sure that it would still be possible post treatment. I also made sure that it would be okay to have children post cancer...it is. in general I was told that with the exception of certain chemo drugs (which I never needed) that your fertility shouldn't be affected by the treatments.

Try to stay positive...it really helps in the healing process. You have a rough journey in front of you, but if you look at it as being just like if you had a cold or a broken bone...you get a cold or break a bone, you see the proper doctor, you take your medication, and you heal to get better. that was how I looked at my cancer...it was just something that I had to get out...almost like I was evicting it from my body and then the radiation was a deep clean to insure that the "tenant" (the tumor) didn't leave any friends behind! it takes time and there is a lot of down time while waiting for results and treatment plans, but it important that they get your treatment right.

you will be in my thoughts and prayers. and because we all need one from time to time...a HUGE HUG is coming your way!
elizabeth
p.s. feel free to write me if you have any questions. I am not on all the time, but I will answer when I am on!

thank you
Elizabeth-

thanks also for the info- a rare cancer for us must mean something (good thoughts) I hope they can get it all out in surgery WED but am prepared for anything



thank you

ekdennie said:

mucoepidermoid Carcinoma
shelbydluge,
welcome to this site, sorry you had to find yourself here, but I am glad that you were able to find us. there are a lot of people on this site who can help you along the way.
I am going to give you fair warning....I am going to write a lot of info here!
I am 31 years old and the mother of three kids (they were 4, 2, and 4months at the time of my diagnosis).I was diagnosed with Mucoepidermoid Carcinoma of the hard palate June 30, 2010. It had grown into my maxillary sinus cavity as well. I had surgery in August to remove a golfball sized tumor. I now have a hole in the roof of my mouth and I wear a prosthetic, called a obturator so that I can talk more normally and so that less liquids and foods go into my sinus cavity.
I was initially told that my tumor was low grade, but post surgery it was moved up to intermediate grade clear cell variety. In October I began 6 weeks of IMRT (intensity modulated radiation therapy). There were some rough side effects, such as sores, and radiation burns, but I handled them pretty well with proper medication, rest, and nutrition. eating was hard, so I drank high protein boost and a product called scandishake. I finished radiation in the middle of November and I am now able to eat most foods, but I have to be careful with food with hard edges, spicy food, or foods that are too hot...warm, soft, non-spicy foods work best. I had some damage to my taste buds, but they are starting to come back...it just takes patience.

some basics about Mucoepidermoid Carcinoma (MEC).
It can occur in anyone regardless of age. It is a rare tumor. you will not find very many people on here who are currently going through treatment, or even who have recently gone through treatment. Nkimber, kingcole, myself and LTRII are on here right now. there are no risk factors for it. I am a non smoker, occasional drinker, I eat well. I was a little overweight before treatment, but I am in a normal range now. (I lost 20 lbs with surgery...10 of which I gained before surgery by eating every food I loved...and I lost another 20-25 lbs due to radiation).
Some of the tests that are usually run include, a CT and a PET scan. the CT will show just how big the tumor is, or if any is left, and the PET scan will show if it has spread to any other part of your body. if they see any signs that it might be in your lymph nodes, they will often remove all of the lymph nodes on that side of your neck or since you are young they might do radiation to those lymph nodes.
with MEC the best results occur in people who have surgery followed by radiation. in some cases they will also do chemotherapy, particularly if there is spread.
my tumor was designated as T2N0M0...the T2 describes the size of the tumor and the grade, the N0 means that no lymph nodes were involved, and the M0 means that there was no spread or metastasis. I presented as stage IV clinically (or before surgery, based on size and how it was pressing on bone), but was downgraded to stage II after the pathology as it had not yet invaded my bones or nerves.

It is important that you trust your doctors, so if you don't like what they tell you, get a second opinion. faith and or trust in your doctor makes this whole process easier. you need to be focused on healing, not in dealing with if your doctor is the right one....deal with that now, and then trust them. make lists of any and all questions you have and don't leave until you get an answer that makes sense...make sure that if you want to have children in the future that you let them know that you need them to protect your fertility. ask if your treatments will cause any long term fertility issues. mine did not, but as I would like to have another child, I wanted to make sure that it would still be possible post treatment. I also made sure that it would be okay to have children post cancer...it is. in general I was told that with the exception of certain chemo drugs (which I never needed) that your fertility shouldn't be affected by the treatments.

Try to stay positive...it really helps in the healing process. You have a rough journey in front of you, but if you look at it as being just like if you had a cold or a broken bone...you get a cold or break a bone, you see the proper doctor, you take your medication, and you heal to get better. that was how I looked at my cancer...it was just something that I had to get out...almost like I was evicting it from my body and then the radiation was a deep clean to insure that the "tenant" (the tumor) didn't leave any friends behind! it takes time and there is a lot of down time while waiting for results and treatment plans, but it important that they get your treatment right.

you will be in my thoughts and prayers. and because we all need one from time to time...a HUGE HUG is coming your way!
elizabeth
p.s. feel free to write me if you have any questions. I am not on all the time, but I will answer when I am on!

...
wow, thank you for being so insightful in your post. My sister is 26 and a biopsy of a bump in the roof of her mouth came back cancerous. She is having surgery to remove tissue around where the bump was to be sure is isn't cancerous as well. The doctors don't know how much of the roof they will have to remove and will determine this by testing the tissue as it is removed. The doctor already informed her depending upon the amount cut away she will need a prosthetic like you have. He mentioned she can choose for it to be permanent, removable or they could basically fillet the roof of her mouth to create a new palate. I was curious if yours was permanent or not and if it effected your speech & voice. If so, in what way. The doctor said more air would pass through as she spoke and the prothetic would "help" this. Also, is it hard to suck and swallow normally? Also, as far as the unknown diameter of the cancer, he never mentioned a PET scan, he said typically this type of cancer doesn't spread but wouldn't one almost seem mandatory just to be sure it hasn't?
I hope to hear back from you and in the meantime i will be stocking up on boosts, scandishakes, and bolthouse farms.
Any information will be greatly appreciated!) I hope you are doing well & Thank you so much!

ekdennie said:

mucoepidermoid Carcinoma
shelbydluge,
welcome to this site, sorry you had to find yourself here, but I am glad that you were able to find us. there are a lot of people on this site who can help you along the way.
I am going to give you fair warning....I am going to write a lot of info here!
I am 31 years old and the mother of three kids (they were 4, 2, and 4months at the time of my diagnosis).I was diagnosed with Mucoepidermoid Carcinoma of the hard palate June 30, 2010. It had grown into my maxillary sinus cavity as well. I had surgery in August to remove a golfball sized tumor. I now have a hole in the roof of my mouth and I wear a prosthetic, called a obturator so that I can talk more normally and so that less liquids and foods go into my sinus cavity.
I was initially told that my tumor was low grade, but post surgery it was moved up to intermediate grade clear cell variety. In October I began 6 weeks of IMRT (intensity modulated radiation therapy). There were some rough side effects, such as sores, and radiation burns, but I handled them pretty well with proper medication, rest, and nutrition. eating was hard, so I drank high protein boost and a product called scandishake. I finished radiation in the middle of November and I am now able to eat most foods, but I have to be careful with food with hard edges, spicy food, or foods that are too hot...warm, soft, non-spicy foods work best. I had some damage to my taste buds, but they are starting to come back...it just takes patience.

some basics about Mucoepidermoid Carcinoma (MEC).
It can occur in anyone regardless of age. It is a rare tumor. you will not find very many people on here who are currently going through treatment, or even who have recently gone through treatment. Nkimber, kingcole, myself and LTRII are on here right now. there are no risk factors for it. I am a non smoker, occasional drinker, I eat well. I was a little overweight before treatment, but I am in a normal range now. (I lost 20 lbs with surgery...10 of which I gained before surgery by eating every food I loved...and I lost another 20-25 lbs due to radiation).
Some of the tests that are usually run include, a CT and a PET scan. the CT will show just how big the tumor is, or if any is left, and the PET scan will show if it has spread to any other part of your body. if they see any signs that it might be in your lymph nodes, they will often remove all of the lymph nodes on that side of your neck or since you are young they might do radiation to those lymph nodes.
with MEC the best results occur in people who have surgery followed by radiation. in some cases they will also do chemotherapy, particularly if there is spread.
my tumor was designated as T2N0M0...the T2 describes the size of the tumor and the grade, the N0 means that no lymph nodes were involved, and the M0 means that there was no spread or metastasis. I presented as stage IV clinically (or before surgery, based on size and how it was pressing on bone), but was downgraded to stage II after the pathology as it had not yet invaded my bones or nerves.

It is important that you trust your doctors, so if you don't like what they tell you, get a second opinion. faith and or trust in your doctor makes this whole process easier. you need to be focused on healing, not in dealing with if your doctor is the right one....deal with that now, and then trust them. make lists of any and all questions you have and don't leave until you get an answer that makes sense...make sure that if you want to have children in the future that you let them know that you need them to protect your fertility. ask if your treatments will cause any long term fertility issues. mine did not, but as I would like to have another child, I wanted to make sure that it would still be possible post treatment. I also made sure that it would be okay to have children post cancer...it is. in general I was told that with the exception of certain chemo drugs (which I never needed) that your fertility shouldn't be affected by the treatments.

Try to stay positive...it really helps in the healing process. You have a rough journey in front of you, but if you look at it as being just like if you had a cold or a broken bone...you get a cold or break a bone, you see the proper doctor, you take your medication, and you heal to get better. that was how I looked at my cancer...it was just something that I had to get out...almost like I was evicting it from my body and then the radiation was a deep clean to insure that the "tenant" (the tumor) didn't leave any friends behind! it takes time and there is a lot of down time while waiting for results and treatment plans, but it important that they get your treatment right.

you will be in my thoughts and prayers. and because we all need one from time to time...a HUGE HUG is coming your way!
elizabeth
p.s. feel free to write me if you have any questions. I am not on all the time, but I will answer when I am on!

...
wow, thank you for being so insightful in your post. My sister is 26 and a biopsy of a bump in the roof of her mouth came back cancerous. She is having surgery to remove tissue around where the bump was to be sure is isn't cancerous as well. The doctors don't know how much of the roof they will have to remove and will determine this by testing the tissue as it is removed. The doctor already informed her depending upon the amount cut away she will need a prosthetic like you have. He mentioned she can choose for it to be permanent, removable or they could basically fillet the roof of her mouth to create a new palate. I was curious if yours was permanent or not and if it effected your speech & voice. If so, in what way. The doctor said more air would pass through as she spoke and the prothetic would "help" this. Also, is it hard to suck and swallow normally? Also, as far as the unknown diameter of the cancer, he never mentioned a PET scan, he said typically this type of cancer doesn't spread but wouldn't one almost seem mandatory just to be sure it hasn't?
I hope to hear back from you and in the meantime i will be stocking up on boosts, scandishakes, and bolthouse farms.
Any information will be greatly appreciated!) I hope you are doing well & Thank you so much!

nikkinak said:

...
wow, thank you for being so insightful in your post. My sister is 26 and a biopsy of a bump in the roof of her mouth came back cancerous. She is having surgery to remove tissue around where the bump was to be sure is isn't cancerous as well. The doctors don't know how much of the roof they will have to remove and will determine this by testing the tissue as it is removed. The doctor already informed her depending upon the amount cut away she will need a prosthetic like you have. He mentioned she can choose for it to be permanent, removable or they could basically fillet the roof of her mouth to create a new palate. I was curious if yours was permanent or not and if it effected your speech & voice. If so, in what way. The doctor said more air would pass through as she spoke and the prothetic would "help" this. Also, is it hard to suck and swallow normally? Also, as far as the unknown diameter of the cancer, he never mentioned a PET scan, he said typically this type of cancer doesn't spread but wouldn't one almost seem mandatory just to be sure it hasn't?
I hope to hear back from you and in the meantime i will be stocking up on boosts, scandishakes, and bolthouse farms.
Any information will be greatly appreciated!) I hope you are doing well & Thank you so much!

hole
nikkinak-
for me, I currently have what they call an interim obturator. they put in a surgical obturator when I had surgery...I had that one for about 6 weeks...it was too small, they had underestimated the size of the tumor. My current one is removable and I remove it often to clean it, especially after I eat. I do not know yet what we will do for my final obturator. it will depend on what my doctors all think is best.
I am not able to suck on a straw very well...not enough suction. I can not hold my breath, except if I hold my nose at the same time. with the obturator in my voice sounds different than before, but it is hard to explain how it is different. without the obturator in, the best way to describe how I sound is like a deaf person who can speak. I have to slow down my speech and it is harder for people to understand me. I had/have a very hard time with words that begin with D and B. The hole isn't too bad, just takes some getting used to. I now take a toothbrush with me when I go out, so that I can brush my teeth after I eat and I have to remove the obturator and rinse it, or it smells bad. I use both efferent and polident to help keep it clean...one is a 3 minute formula, the other is a 20 min one. it takes me longer to get ready, and allergy season is more disgusting than before. I use Neil Med Sinus rinses all the time now. I was told to do two packets per nostril twice a day...It helps a great deal.
also, you may want to stock up on some extra soft tissues...my nose leaks all the time...mostly out of one nostril. don't be surprised if this happens to your sister as well. mine is caused because the obturator doesn't fully seal off the hole/defect in my hard and soft palate. she may also develop some sores along the back of the obturator, but it can be adjusted by a good prostlodontist.
as for swallowing, I have had to adjust a little. I can drink without the obturator in, but some of the liquid will go up my nose. I can not eat without it in though. It stops most food, but not all from going up my nose, thus the sinus rinses...oh, and the neti pot is not recommended...you need the force of the bottle. Most of my eating and drinking difficulties come from the radiation I had post surgery (30 rads IMRT). I didn't eat or drink much for about 3-4 days post surgery...my mom would bring me jello and I lived on room temp jello for most of those first couple of weeks, then I progressed to over cooked pastas with plain sauces. Avoid pepper...does not feel good up the nose...neither does wasabi (though it clears out the sinuses! )...soft drinks were okay once I got the interim obturator, but it hurt before. very hot food or very cold food hurt while I was healing from the surgery...room temp or just a little while out of the fridge felt best, or cooled down pastas. High protein boost gives you plenty of nutrients, but if she loses too much weight, then go to the scandishakes...they are easier to get down, but they sat heavy on my stomach...a lot of calories in 6 oz of milk. oh, and you have to special order them, or ask your pharmacist to get them.
It took a good 6-7 weeks to heal from my surgery, but I threw a blood clot in my recovery room...I was told that rarely ever happens. I also needed a transfusion...they left it up to me if I wanted one...I did not. they told me that it was better for my body without, but I was very weak for quite awhile. I don't want to scare you, just want you to be aware it could happen...scared my husband and myself.
as for the PET scan...it shouldn't hurt anything to have it run just to double check, but it does put a lose dose of radiation into your sister's blood stream. it goes through the body quickly, but I wasn't able to hold my children for about 12 hours after the procedure and I was breastfeeding my youngest, he was 5-6 months old when I had my PET scan run and I couldn't nurse him for two days and had to drop off samples to make sure it was clean.
I wish you and your sister the best of luck through all of this. I will be praying that if she has any palate removed that it is minimal and that it is easy to repair....oh, and boathouse farms...yummy!
Huge HUGS coming your way!
elizabeth

tee12586 said:

mucoepidermoid carcinoma
Hi Shelby, I hope you are doing well. In Oct 2010 I found a small lump behind my right ear. My primary and me watched to see if it grew and over a couple of months the size did slightly change. I became concerned when I was having issues sleeping, talking, swallowing, etc. The pain was so bad in my jaw and the shooting pains that would reach the top of my head was unbareable. My primary sent me to a ENT and we scheduled surgery to remove the tumor. This was discussed after have a MRI with contrast. Everyone include the MRI tech seemed to lean towards the tumor being benign. I went for surgery Feb 10 2011, and 2 hours later when the surgery was over the surgeon told my husband everything looked good. Big thumbs up! Stitches were removed 4 days later. 2 weeks later we went to the office to get medically cleared to I can return to work, and was told that the pathology reports came back as Mucoepidermoid Carcinoma. We (including my family dr) were shocked. We were referred to a radiation oncologist to do radiation. The dr stated he removed the tumor but being it was capsuled (tumor didn't have what they referred to a "sausage skin) around tumor) and the tumor was so close to the margins in the skin it was be best to treat as a form of "insurance". My treatment plan began, and 35 sessions was the final number. I have 6 sessions left at this point. I have to tell you. I am 45 years old. I have been sick, I have had kids by C-section, tonsils out, and other injuries, but never in my life have I ever, ever experienced so much pain with the surgery, post surgery, and with the sores in my mouth and throat. I have to tell you I was a big baby week 4-5 (of 7), but my face has adjusted to the radiation now. I have no taste buds working so everything tastes like cardboard. I also have used the Carnation Instant breakfast for supplementing my eating. I also found Pastina and Mashed potatoes as substance. The magic mouth wash was also my savior at times. Ora gel too. They never told me I would lose some of my hair and I did. I lost a very little bit behind the same ear they are treating. I don't know if it was from the radiation per say or the fact that my skin is so dry that I scratch all night on that side of my head. The area of the face being treated does ok Monday through Wednesday, but the reason of the week it looks very red and is hot to the touch. I have loss some weight, nothing drastic. I have slept most of my life away since Feb, and I am looking forward to putting this behind me. I also have one some research online but I am grateful for coming across this post. Thank you all for your input. As you all know the cancer is rare, and without post from people like us, the complete understanding is not quite clear. Good luck to you all and keep me posted.

Mucoepidermoid Carcinoma
My 52 year old father was diagnosed with mucoepidermoid carcinoma of the paraded and saliva glands. It has gone into one side of lymphnodes. He is a pastor at a small church and does not have insurance. It has been nearly 2 and a half months since the diagnosis and nothing has happened. We have to go through the VA. He is starting radiation treatments this week and we are just now meeting witha surgeon on Friday afternoon to discuss surgery. They believe it to be stage 4. I'm their 26 year old daughter trying desperately to figure something out while all of us holding down jobs. PLEASE give an advice you may have for our family. Thanks.

Hondo said:

Hi gmtaylor
Welcome to the family here on CSN, sorry to here this about your Dad but don’t give up a lot of us have gone through this and are now survivors. My cancer was NPC of the sinus area so here will more then likely be having some of the same type of treatments I did for his salivary glands. His radiation will normally be about 35 treatments and they will burn him up pretty bad but that is OK. He might also need Chemo depending on his doctor. But through all this just have Faith, God will give you and your Dad the strength you need to face this. Many of us here will also keep you both in our prayers.

God bless you both while in his workshop
Hondo

MEC
Hi and welcome. I'm just 3 weeks out of hospital and doing ok i suppose, so the doctors tell me. I am 34 and had a lump at the roof of my mouth as im scared of the dentist i left it there for about 6 months then i had to do something this was in August this year. I went for a CT scan on the wed, the following wed i had a biopsy then the friday i was then diagnosed with MEC. It happened so quickly for me that i dont think i ever got to adjust. I the went for surgery 3 weeks later. Now im here and im now left with a few scars. They ad to cut under my eye and down my nose to get at the tumour as it was behind my eye and dislocate my tempero mandibular joint to get behind my ear as it was also sitting there. they removed a tennis ball size tumour out. They then took a piece of my arm and put it in my mouth so now i have my hand in my mouth literally!! then they took a graft from my thigh to replace the skin and fat to my arm. So at the moment i have a lovely scar on my arm which complicates things with movement as my hand doesn't work as well as it should but the wound has healed. There is the graft site on my leg but that has still got a dressing on it so at the moment im walking with a limp only coz its sore at the minute. my jaw doesnt work very well but im now going to a physio got word through today so fingers crossed. my taste buds have changed but that's ok. My face is numb down one side the left side but i can deal with that and half my mouth is numb. I just need to be careful and aware of the numbness. I was given the news that I didn't need chemo or radiation therapy as the margins of my tumour were clear thank goodness. I know it sounds a lot but there is light at the end of the tunnel. I live in Scotland so I think they do things a wee bit differently over here but we are all here for everone. This is a great site and you will get lots of support from lots of people at different stages of the treatment. My thoughts are with you , blessings Pauline

navwife said:

I was diagnosed yesterday
also, Shelby, so I have the same questions you do. But for you, a precious 20 yr old woman, I will keep you in my prayers that this will have a good outcome for you, and that you don't suffer too much from whatever you have to go thru. I don't know if you are a Christian, but if you are, hold tight to your faith, and let God and your family help you get thru this.

I look forward to following your progress. My cancer is in my mouth by my jawline. I am 71, and am a cancer survivor, surgery, no other treatment in 1998. God is Good. I expect him to take good care of me and I ask him to take good care of you as well.

May God Bless each and everyone of you. I haven't met anyone yet who has the cancer in the same spot I do. Mine is behind the last tooth on the bottom left side of my mouth, inside.

Hi navwife

So sorry to hear you are going through this again but you did find the right place here with a lot of other just like you, so Welcome to the family here on CSN. I too believe that the only reason I am here is because God needed someone stay behind and help others through there trials with Cancer.

God bless and be with you while in His workshop
Hondo