Mucoepidermoid carcinoma, grade II

dee248

My 12 year old sister was diagnosed with this last Friday. As you can imagine, we're all adjusting to the news. We are scheduled for an appointment later this with the cancer center and I want to know what should I be expecting. We are all freaking out and want to see what everyone's experience was. Any advice is helpful. Thanks.

longtermsurvivor

there are those here with MEC
and I'm sure they will jump in when they see your post. In the meantime, there are a numberof MEC threads, some of which have pretty current discussion. You might look through the first three pages or so of thread titles and you will come up with some reading to get you going.

I'm sorry you have to be here, and I'm certainly sorry to hear of your young sibling, who shows that this particular cancer is no respector of age. Her treatments will be similar to most of us who have been through a variety of different cancers of the throat, so issues related to her care, or your family are always welcome here.

Pat

ekdennie

MEC (mucoepidermoid carcinoma)
hello, welcome, and a huge hug to you! It was hard for me to hear I had cancer, but I know it just about destroyed my sister. I was older than your sister (31), but still considered to be very young for cancer.
here is some basic info for you:
MEC can occur in anyone at any age. there are no risk factors. there is nothing your sister did or that your parents did that could have caused it or prevented it. it is a very rare cancer. It is not believed to be genetic.
it is staged and graded.
grading refers to how abnormal the cells are. low grade, intermediate, and high grade. all of which can have a high survivability. . where is her MEC located? mine was in my hard palate. mine was stage IV, clinically, stage II pathologically, low grade before surgery and intermediate grade post surgery. I had clear margins, but I decided to have 30 rounds of radiation post surgery to help insure it wouldn't come back, due to receiving a diagnosis of intermediate grade. I also have a prosthetic (it looks a lot like a retainer, that covers my hole so I can eat and drink and speak more normally). I hope to have my hole closed in a couple of years. most often when the holes are smaller they are closed during the same initial surgery.
some basic things regarding treatment:
surgery is recommended regardless of grade
radiation is recommended if either you couldn't get clear margins during the surgery (this means cancer free tissue surrounding all of the edges of the tumor) or if it it intermediate or high grade
chemotherapy is recommended for some intermediate and almost all high grade patients.

MEC is composed of a lot of different cell types, so your family will need to know her grade, stage, and tumor type.
Have your parents get a binder to keep all of her doctor information in. get copies of every report that any doctor writes for her to put inside it. also keep copies of any tests that are run inside the binder to take to any specialists, for example if she has a PET scan run, in addition to having a copy sent to your doctor, pick up a copy for the binder, that way if the copy doesn't make it to the doctor or if it gets misfiled you don't have to reschedule to be seen again. I learned that the hard way!
this is a scary time for you and your family, but you need to remember that you all are a family. she may need more support from your parents for a while, but that doesn't mean that your needs are not important too. it is normal to be angry with her just like you normally would be! How old are you? try your hardest, regardless of your age to talk to your parents about how you feel. your feelings are just as important as your parents, you sister's or any other family members. siblings are often overlooked. don't let your sister's cancer tear your family apart...something like this can strengthen your family, bringing you together. have faith that she will be okay. have hope that this will be but a brief journey in your long life together as sisters. something that helped me get through my treatments was to think about two things, one, how do I want people to look back and comment on how I handled the treatment...did I want them to say that I was strong or that I was hard to be around? the second was how did I want to look back and view myself. did I want to be proud of how I behaved, that I sought guidance when I needed it, that I got the hugs I needed when I needed them, or did I allow depression to take over. it is very common for head and neck patients to develop depression. it is also common for their families. oh, and take cues from your sister as to if you tell the world that she has cancer or if your keep it mostly quiet. I wanted everyone to know, I wanted the support for my family and I needed the prayers. she may not want all of the attention or to be known as someone who had cancer. I do know that it seems very awkward to say, hello, my name is elizabeth and I had cancer and I won the battle. It is a little easier to say, hi, I am elizabeth. what is your name? it is nice to meet you. then after we know each other to let them know that I spent part of 2010 fighting and beating cancer!
I finished my treatments in November of 2010. I had three young children when I began treatment and I am very happy to say that I have a fourth child now. she was born October 2011.

there is always hope!
each person has a different cancer journey, but there is always hope and there are always hugs!
please feel free to message me if you have any questions. I am not on here very often any more, but i will check more often for the next couple of months.
elizabeth
p.s. HUGE HUGS!

mbm

Did they grade it low or high?
Grading for MCE is usually low or high, though there is controversy about going with staging more common to other cancers. You put Grade II and I'm just curious if they mean HIGH or II out of III, etc.

Where is she being treated?

tommyodavey

mbm said:

Did they grade it low or high?
Grading for MCE is usually low or high, though there is controversy about going with staging more common to other cancers. You put Grade II and I'm just curious if they mean HIGH or II out of III, etc.

Where is she being treated?

MEC
Hi Dee,

I too have/had MEC. So far I've had three surgeries. 1)Biopsy, 2)removal of tumor on the base of my tongue, 3) radical neck dissection due to positive lymph nodes in my right neck. On Monday I go back to week three of radiation therapy. Luckily no chemo.

You didn't give us much information but I am assuming she hasn't yet had it graded. If you know its Mucoepidermoid Carcinoma then she's had a biopsy.

Mine was graded low but at stage III because it had metastasized to my neck. And that is the reason for no chemo. It's been slow growing on my tongue for many years. I am also receiving low dose radiation spread out an added week so the side effects won't be too bad. There isn't a whole lot of information about it as the cancer itself is kind of rare. But what I did find out was MEC normally affects young children and adults in their fifties. I'm 57. My Dr. also said it may have started due to exposure to radiation or some other chemicals. Well I haven't had anymore exposure than anyone else. Who really knows where cancer comes from?

I am sorry she has it but is young enough to win this one. If you have anymore questions about my experience, fire away. If you need my e-mail, just ask.

Tommy

dee248

tommyodavey said:

MEC
Hi Dee,

I too have/had MEC. So far I've had three surgeries. 1)Biopsy, 2)removal of tumor on the base of my tongue, 3) radical neck dissection due to positive lymph nodes in my right neck. On Monday I go back to week three of radiation therapy. Luckily no chemo.

You didn't give us much information but I am assuming she hasn't yet had it graded. If you know its Mucoepidermoid Carcinoma then she's had a biopsy.

Mine was graded low but at stage III because it had metastasized to my neck. And that is the reason for no chemo. It's been slow growing on my tongue for many years. I am also receiving low dose radiation spread out an added week so the side effects won't be too bad. There isn't a whole lot of information about it as the cancer itself is kind of rare. But what I did find out was MEC normally affects young children and adults in their fifties. I'm 57. My Dr. also said it may have started due to exposure to radiation or some other chemicals. Well I haven't had anymore exposure than anyone else. Who really knows where cancer comes from?

I am sorry she has it but is young enough to win this one. If you have anymore questions about my experience, fire away. If you need my e-mail, just ask.

Tommy

MCE
It was grade II. We received all the confirmation yesterday and our treatment plan so far. She will have surgery in 2 weeks to remove it and next week she will have a biopsy on her lymph nodes to check them.

They said hers was close to her sinuses. It's on her upper left side after her last molar. So they said removing it will leave a hole.

I'm curious to know where everyone's was? Did removing it have an side effects?

dee248

mbm said:

Did they grade it low or high?
Grading for MCE is usually low or high, though there is controversy about going with staging more common to other cancers. You put Grade II and I'm just curious if they mean HIGH or II out of III, etc.

Where is she being treated?

Grade
They just told us II out of III. We live in Houston so we are at M.D. Anderson Cancer Center (thankfully.

Where was yours?

dee248

ekdennie said:

MEC (mucoepidermoid carcinoma)
hello, welcome, and a huge hug to you! It was hard for me to hear I had cancer, but I know it just about destroyed my sister. I was older than your sister (31), but still considered to be very young for cancer.
here is some basic info for you:
MEC can occur in anyone at any age. there are no risk factors. there is nothing your sister did or that your parents did that could have caused it or prevented it. it is a very rare cancer. It is not believed to be genetic.
it is staged and graded.
grading refers to how abnormal the cells are. low grade, intermediate, and high grade. all of which can have a high survivability. . where is her MEC located? mine was in my hard palate. mine was stage IV, clinically, stage II pathologically, low grade before surgery and intermediate grade post surgery. I had clear margins, but I decided to have 30 rounds of radiation post surgery to help insure it wouldn't come back, due to receiving a diagnosis of intermediate grade. I also have a prosthetic (it looks a lot like a retainer, that covers my hole so I can eat and drink and speak more normally). I hope to have my hole closed in a couple of years. most often when the holes are smaller they are closed during the same initial surgery.
some basic things regarding treatment:
surgery is recommended regardless of grade
radiation is recommended if either you couldn't get clear margins during the surgery (this means cancer free tissue surrounding all of the edges of the tumor) or if it it intermediate or high grade
chemotherapy is recommended for some intermediate and almost all high grade patients.

MEC is composed of a lot of different cell types, so your family will need to know her grade, stage, and tumor type.
Have your parents get a binder to keep all of her doctor information in. get copies of every report that any doctor writes for her to put inside it. also keep copies of any tests that are run inside the binder to take to any specialists, for example if she has a PET scan run, in addition to having a copy sent to your doctor, pick up a copy for the binder, that way if the copy doesn't make it to the doctor or if it gets misfiled you don't have to reschedule to be seen again. I learned that the hard way!
this is a scary time for you and your family, but you need to remember that you all are a family. she may need more support from your parents for a while, but that doesn't mean that your needs are not important too. it is normal to be angry with her just like you normally would be! How old are you? try your hardest, regardless of your age to talk to your parents about how you feel. your feelings are just as important as your parents, you sister's or any other family members. siblings are often overlooked. don't let your sister's cancer tear your family apart...something like this can strengthen your family, bringing you together. have faith that she will be okay. have hope that this will be but a brief journey in your long life together as sisters. something that helped me get through my treatments was to think about two things, one, how do I want people to look back and comment on how I handled the treatment...did I want them to say that I was strong or that I was hard to be around? the second was how did I want to look back and view myself. did I want to be proud of how I behaved, that I sought guidance when I needed it, that I got the hugs I needed when I needed them, or did I allow depression to take over. it is very common for head and neck patients to develop depression. it is also common for their families. oh, and take cues from your sister as to if you tell the world that she has cancer or if your keep it mostly quiet. I wanted everyone to know, I wanted the support for my family and I needed the prayers. she may not want all of the attention or to be known as someone who had cancer. I do know that it seems very awkward to say, hello, my name is elizabeth and I had cancer and I won the battle. It is a little easier to say, hi, I am elizabeth. what is your name? it is nice to meet you. then after we know each other to let them know that I spent part of 2010 fighting and beating cancer!
I finished my treatments in November of 2010. I had three young children when I began treatment and I am very happy to say that I have a fourth child now. she was born October 2011.

there is always hope!
each person has a different cancer journey, but there is always hope and there are always hugs!
please feel free to message me if you have any questions. I am not on here very often any more, but i will check more often for the next couple of months.
elizabeth
p.s. HUGE HUGS!

MEC
Thanks for your post. It's definitely inspiring to read. Her's is located on the top left side behind her molars. The surgery is scheduled but it's still scary to realize it. They said it was close to her sinuses and she will need a denture. I really didn't understand that part. They will need to take tissue from her thigh. I was wondering if anyone had experience with that.

I'm 27 and come from a very large, supportive family. We are all doing everything we can to make sure my sister is our number one priority. We are all much older so the jealous thing thankfully is not an issue for us.

Thanks for your advice about the binder.

gpmav

dee248 said:

Grade
They just told us II out of III. We live in Houston so we are at M.D. Anderson Cancer Center (thankfully.

Where was yours?

Grade
Hi Dee,
Mine was between hard and soft palate on the right side, I had a hole after surgery (1 month ago) but now is Recovering quite well. doctor said it will be completely closed in few weeks.
Huge hug to' you an to your sister, if you need more info just ask!
G

ekdennie

dee248 said:

MCE
It was grade II. We received all the confirmation yesterday and our treatment plan so far. She will have surgery in 2 weeks to remove it and next week she will have a biopsy on her lymph nodes to check them.

They said hers was close to her sinuses. It's on her upper left side after her last molar. So they said removing it will leave a hole.

I'm curious to know where everyone's was? Did removing it have an side effects?

MEC
my tumor was just off center to the right side, mostly on my hard palate, but also on my soft palate. I had originally noticed mine back in 2005, but I had been told it was nothing to worry about so it grew for another 5 almost 5 1/2 years before mine was removed. it had grown into my sinuses. My tumor was about the size of a ping pong ball, but in order to get clean margins, what they ended up removing was about golf ball sized. you asked about side effects. I have had some, but please keep in mind that everyone has different side effects. I had some problems at the hospital the day of my surgery (I threw a blood clot and it was hard to get the bleeding to stop). after that mostly I sounded like myself until I lost all of the blood clots about two weeks after surgery. this was a very emotional day for me. I no longer sounded like myself, I sounded so different and it was hard for people to understand me. I had people calling the house asking to speak to my parents. My voice was very hypernasal, like when you have a very bad cold. it was hard for me to say certain words, like my d's and n's...which kind of stunk since my last name contains both (dennie). I couldn't drink through a straw, I couldn't blow up a balloon without holding my nose, and my nose leaks, when I eat, drink, smell good food, or sometimes just because. I have to keep a box of kleenex with me just about all the time. I also have a travel toothbrush and toothpaste in my purse for quick cleaning after I eat out. I take my mouth piece out, scrub it and brush my teeth..it is the only way I have found of decreasing the amount of nose leaking I have.
after radiation, I developed a whole new set of side effects. I will let you know about those if your sister needs radiation. I do frequently get sores from my mouthpiece, but my prosthedontist (the specialist dentist who made my mouthpiece or obturator) makes adjustments when I get a sore. I actually go in this friday for an extension to my mouthpiece. we had been cutting it back to allow for less sores, but now I feel like I am hypernasal again and I can not drink from a straw very well. I am having too much food and fluids going into my nasal passage.
I am happy to hear that you are at MD Anderson, they are supposed to be the best. I live in Oklahoma, so I went to a local hospital and worked with some amazing doctors here! my ENT was able to remove my tumor without leaving any visible scars...most tumors of my size are removed my moving the nose, but he was able to go in through my nostrils and then through my mouth. I have a huge hole in my mouth, but it could have been more psychologically hard if I had to see exterior scars, too. it was and still is hard for me to talk about a lot of what I went through, especially the surgery and the last couple of weeks of radiation. I know someday I will need to talk about it, but I am trying so hard to be a good mommy to my now four kids, that I think it can wait a little longer. I am in the process of finding a psychologist to talk to , someone who isn't family. I would recommend one for your sister as well. I have been told that head and neck cancers can leave you very depressed. I know that I am more picky about my food. if foods are not done the way I can eat them I take it very personally, and I didn't act that way before. oh, and if your sister has any hole after her surgery...do NOT feed her anything that is heavy in pepper or hot peppers...they hurt a lot when they go up your nose! sinus rinses help remove the pieces, but black pepper and jalapenos can sure hurt when they are up the nose and in some cases for a while afterwards.
I have to go...my 5 month old baby girl is waking up from her nap! I went through treatment with three kids ages 4, 2, and 5 months, and now 20 months later I have another baby. I just had my first post surgery PET scan and there is no sign of cancer!
first there is the diagnosis, then the hurry up and wait (where you rush to get every test done and then you wait to begin treatment), then there is treatment and it can be rough, but not for everyone, then you have post treatment...where you want your old life back, but the life you knew is gone, so you have to find a new normal...this is the longest and hardest time...this is where your sister will need you the most. good luck...you and your sister will be in my prayers.

ekdennie

stage as important as grade
I did a google search on mucoepidermoid carcinoma and one the the sites I went to that used to indicate that grading was the most important for prognosis, now indicates that stage is as important if not more important. that you can have a low stage but a high grade and do better than some with a high stage but low grade. when I was going through treatment everything put the focus more on the grade than the stage. wishing you and your sister the best. I feel that beyond the grading and the staging, attitude is the most important. keeping positive, exercising when able, hanging out with friends (although it can feel very awkward), and just finding things that make you happy can make cancer seem small, even though the battle can seem large.

I viewed cancer as an unwanted tenant, one who was destroying my home. my surgeon kicked the tumor out. radiation was like the cleaning service that was hired to sanitize the house so it could be my home again. I pray your sister only needs surgery, but if she needs radiation, it might help to think of it that way.

please post updates, when you can! huge hugs!

LeoS2323

MEC
Hi Dee

Firstly very best of luck to your sister - I was actually diagnosed with MEC too within a few days of your sister on Tuesday. I thought I was too young at 34, but 12 is unthinkable - it must be so hard for her and for your whole family.

Mine was a very odd presentation - my primary is too small to find, I had a big lump appear in my neck 6 months ago which ultimately proved to be a metastatic lymph node. didn't even react to a PET scan - I had one 3 months before it was removed and the lump hardly reacted to the PET at all. The primary wasn't anywhere to be seen!

They thought it was a cyst, even when the removed it from my neck. I have a discharge letter from the hospital saying 'removal left branchial cyst'.

It was only after a second opinion from the pathology lab and 3 weeks following the operation I was brought in and told they found MEC in the node, which had presented filled with fluid and given the appearance of a cyst throughout. They officially graded it intermediate but the oncologist seemed to think the behaviour was tending towards low.

My oncologist (who is one of the top guys in the UK apparently) seems to think this is a very beatable cancer in general compared to many; everyone has different circumstances of course, but she is young and if she is positive an gets lots of support she will get through it - you all will.

I'm not seeing this as anything except an incredibly tough road I have to tread with ultimately a happy end to it. I want to come out of it a better, a stronger person and a better Dad and Husband. Its different for you and in some ways I imagine harder to watch your sister fight it, because you will feel helpless and because she is so young.

I have been OK since my diagnosis because its my fight, and I have no choice. My wife has found it much harder to get her head around and has been incredibly upset because she can't do anything to take it away. Sometimes I think this kind of illness is probably even harder emotionally for the people around to deal with than the person afflicted.

I'm sure it will be incredibly hard for you too, but I wish you the very best of luck with everything - and I'm sure she will get through it.

All the best

Leo

LeoS2323

ekdennie said:

stage as important as grade
I did a google search on mucoepidermoid carcinoma and one the the sites I went to that used to indicate that grading was the most important for prognosis, now indicates that stage is as important if not more important. that you can have a low stage but a high grade and do better than some with a high stage but low grade. when I was going through treatment everything put the focus more on the grade than the stage. wishing you and your sister the best. I feel that beyond the grading and the staging, attitude is the most important. keeping positive, exercising when able, hanging out with friends (although it can feel very awkward), and just finding things that make you happy can make cancer seem small, even though the battle can seem large.

I viewed cancer as an unwanted tenant, one who was destroying my home. my surgeon kicked the tumor out. radiation was like the cleaning service that was hired to sanitize the house so it could be my home again. I pray your sister only needs surgery, but if she needs radiation, it might help to think of it that way.

please post updates, when you can! huge hugs!

Hi ekdennie
Hi Elizabeth

I just wanted to say I found your posts really inspirational - as someone who has tackled the same cancer at a similar age (I am 34) and with a young family (I have a little girl aged 3 and a little boy aged 17 months) I take comfort from you having beaten it and come out the other side.

I hope to get to where you are someday, able to look back on having won!

You must be brave to have another little one though, two are tough enough for me even without this business! Four I take my hat off to anyone for managing.

Like your MEC mine has been graded as intermediate, although the oncologist thought the behaviour (speed of development and size, not lighting the PET scan up) are towards the low end. One thing I couldn't believe was that you had yours for over 5 years!

If the situation is as it was when I had my PET scan just before Christmas and as the doctors think it is then I can handle it and take it on. I guess I have been most scared that in the 2 months from the PET to the removal of the met that it might have gone somewhere else like a kidney or something and made things totally different.

I suppose in the grand scheme of these things and the length of time these things can take to develop 2 months isn't much time - especially as it hadn't done much in 4 months from the metastatic node appearing to when I had the PET scan, so little they missed it.

The oncologist is sending me for an MRI of my head and neck area next as I have had PET already and MRI is the only scan I haven't had yet. I think his main aim in doing this is to try to find the primary which is hiding.

He doesn't seem to be worrying it could have moved elsewhere which is encouraging, and said that he thought it to be 'single figure' chances in my case it has moved to any other nodes apart from the one I had removed which also sounds good.

Nonetheless he is taking all those nodes on that side of my neck out in a few weeks just to make sure, I guess better safe than sorry! We don't need them all anyway I suppose..:)

Thanks for your posts Elizabeth, they have made me feel better today and I really appreciate it. Its great to hear the good stories when you are just starting out!

All the best

Leo

CLSunshine

ekdennie said:

MEC (mucoepidermoid carcinoma)
hello, welcome, and a huge hug to you! It was hard for me to hear I had cancer, but I know it just about destroyed my sister. I was older than your sister (31), but still considered to be very young for cancer.
here is some basic info for you:
MEC can occur in anyone at any age. there are no risk factors. there is nothing your sister did or that your parents did that could have caused it or prevented it. it is a very rare cancer. It is not believed to be genetic.
it is staged and graded.
grading refers to how abnormal the cells are. low grade, intermediate, and high grade. all of which can have a high survivability. . where is her MEC located? mine was in my hard palate. mine was stage IV, clinically, stage II pathologically, low grade before surgery and intermediate grade post surgery. I had clear margins, but I decided to have 30 rounds of radiation post surgery to help insure it wouldn't come back, due to receiving a diagnosis of intermediate grade. I also have a prosthetic (it looks a lot like a retainer, that covers my hole so I can eat and drink and speak more normally). I hope to have my hole closed in a couple of years. most often when the holes are smaller they are closed during the same initial surgery.
some basic things regarding treatment:
surgery is recommended regardless of grade
radiation is recommended if either you couldn't get clear margins during the surgery (this means cancer free tissue surrounding all of the edges of the tumor) or if it it intermediate or high grade
chemotherapy is recommended for some intermediate and almost all high grade patients.

MEC is composed of a lot of different cell types, so your family will need to know her grade, stage, and tumor type.
Have your parents get a binder to keep all of her doctor information in. get copies of every report that any doctor writes for her to put inside it. also keep copies of any tests that are run inside the binder to take to any specialists, for example if she has a PET scan run, in addition to having a copy sent to your doctor, pick up a copy for the binder, that way if the copy doesn't make it to the doctor or if it gets misfiled you don't have to reschedule to be seen again. I learned that the hard way!
this is a scary time for you and your family, but you need to remember that you all are a family. she may need more support from your parents for a while, but that doesn't mean that your needs are not important too. it is normal to be angry with her just like you normally would be! How old are you? try your hardest, regardless of your age to talk to your parents about how you feel. your feelings are just as important as your parents, you sister's or any other family members. siblings are often overlooked. don't let your sister's cancer tear your family apart...something like this can strengthen your family, bringing you together. have faith that she will be okay. have hope that this will be but a brief journey in your long life together as sisters. something that helped me get through my treatments was to think about two things, one, how do I want people to look back and comment on how I handled the treatment...did I want them to say that I was strong or that I was hard to be around? the second was how did I want to look back and view myself. did I want to be proud of how I behaved, that I sought guidance when I needed it, that I got the hugs I needed when I needed them, or did I allow depression to take over. it is very common for head and neck patients to develop depression. it is also common for their families. oh, and take cues from your sister as to if you tell the world that she has cancer or if your keep it mostly quiet. I wanted everyone to know, I wanted the support for my family and I needed the prayers. she may not want all of the attention or to be known as someone who had cancer. I do know that it seems very awkward to say, hello, my name is elizabeth and I had cancer and I won the battle. It is a little easier to say, hi, I am elizabeth. what is your name? it is nice to meet you. then after we know each other to let them know that I spent part of 2010 fighting and beating cancer!
I finished my treatments in November of 2010. I had three young children when I began treatment and I am very happy to say that I have a fourth child now. she was born October 2011.

there is always hope!
each person has a different cancer journey, but there is always hope and there are always hugs!
please feel free to message me if you have any questions. I am not on here very often any more, but i will check more often for the next couple of months.
elizabeth
p.s. HUGE HUGS!

Thank you!
I was just told this week that a small bump removed from my hard palate is an MEC. My oral surgeon was amazed that I even noticed the bump at all and was very positive about everything (it was .4 cm). I have an appointment with a specialist in May and will be scheduled for various tests prior to my appointment. Of course, I'm still worried about what the tests will find. I have been reading a lot online and am very encouraged by your posts. You are a great inspiration and have very good advice - I'll be keeping a binder like you suggest. Thank you for posting your story. I'll be back often through all of this. God Bless!

CLSunshine

LeoS2323 said:

MEC
Hi Dee

Firstly very best of luck to your sister - I was actually diagnosed with MEC too within a few days of your sister on Tuesday. I thought I was too young at 34, but 12 is unthinkable - it must be so hard for her and for your whole family.

Mine was a very odd presentation - my primary is too small to find, I had a big lump appear in my neck 6 months ago which ultimately proved to be a metastatic lymph node. didn't even react to a PET scan - I had one 3 months before it was removed and the lump hardly reacted to the PET at all. The primary wasn't anywhere to be seen!

They thought it was a cyst, even when the removed it from my neck. I have a discharge letter from the hospital saying 'removal left branchial cyst'.

It was only after a second opinion from the pathology lab and 3 weeks following the operation I was brought in and told they found MEC in the node, which had presented filled with fluid and given the appearance of a cyst throughout. They officially graded it intermediate but the oncologist seemed to think the behaviour was tending towards low.

My oncologist (who is one of the top guys in the UK apparently) seems to think this is a very beatable cancer in general compared to many; everyone has different circumstances of course, but she is young and if she is positive an gets lots of support she will get through it - you all will.

I'm not seeing this as anything except an incredibly tough road I have to tread with ultimately a happy end to it. I want to come out of it a better, a stronger person and a better Dad and Husband. Its different for you and in some ways I imagine harder to watch your sister fight it, because you will feel helpless and because she is so young.

I have been OK since my diagnosis because its my fight, and I have no choice. My wife has found it much harder to get her head around and has been incredibly upset because she can't do anything to take it away. Sometimes I think this kind of illness is probably even harder emotionally for the people around to deal with than the person afflicted.

I'm sure it will be incredibly hard for you too, but I wish you the very best of luck with everything - and I'm sure she will get through it.

All the best

Leo

Best Wishes
You have a very positive attitude and I'm inspired by your post. I was just told this week that a small bump I had removed from my hard palate is an MEC. My husband is probably taking this harder than I am as you mentioned with your wife. I too hope to come out of this a stronger, better person - a better wife and mother. I wish you all the best with your treatment. God bless!

LeoS2323

CLSunshine said:

Best Wishes
You have a very positive attitude and I'm inspired by your post. I was just told this week that a small bump I had removed from my hard palate is an MEC. My husband is probably taking this harder than I am as you mentioned with your wife. I too hope to come out of this a stronger, better person - a better wife and mother. I wish you all the best with your treatment. God bless!

Hi CLSunshine
Hey there and welcome.

Sorry to hear you have joined the very select MEC group! It seems to be a fairly unusual form of cancer - but one it seems in general which is very curable. I am still learning and in the early stages after diagnosis, but there is a guy on here called tommyodavey who shares our affliction and has just finished his treatment. Tommy is a really positive poster and has been a real help to me so far - look out for him!

So what is the plan for you? Was there any spread to nodes and how will they treat you if not? The surgeons seems to talk about 'clear margins' with surgery - did they get it all or will they treat where it was? I really do wish you all the very best of luck tackling this, stay positive and you will get through it and emerge a stronger person on the other side. Nothing is going to stop me being here for my kids!

All the best

Leo

CLSunshine

LeoS2323 said:

Hi CLSunshine
Hey there and welcome.

Sorry to hear you have joined the very select MEC group! It seems to be a fairly unusual form of cancer - but one it seems in general which is very curable. I am still learning and in the early stages after diagnosis, but there is a guy on here called tommyodavey who shares our affliction and has just finished his treatment. Tommy is a really positive poster and has been a real help to me so far - look out for him!

So what is the plan for you? Was there any spread to nodes and how will they treat you if not? The surgeons seems to talk about 'clear margins' with surgery - did they get it all or will they treat where it was? I really do wish you all the very best of luck tackling this, stay positive and you will get through it and emerge a stronger person on the other side. Nothing is going to stop me being here for my kids!

All the best

Leo

Hi
Thank you for your reply and encouring words! It's great to be able to communicate with others dealing with this. I'm so glad to find everyone here. I look forward to reading Tommy's posts.

I don't really know what the plan is yet. My oral surgeon removed the bump thinking it was completely benign, so I don't think he was concerned with clear margins at removal of it. My report says it is invasive of the peripheral margin and very close to the deep margin. I'm not exactly sure what that means, but it sounds like they may need to remove more tissue? I am scheduled to see a specialist in May and between now and then I am to have any tests that he wants run - I should find out next week what I tests I am scheduled for. My tumor was really small (.4 cm), so I hope that it hasn't spread anywhere. Of course, I can't help but be worried what they will find in the tests.

I have a 4 year old little girl and just doing the every day normal things with her is keeping me positive. I am a fighter and will get through this, as will you!

Thank you again for your reply. I'll be back often and would like to keep up on how things are going with you. Take care and best wishes to you and your family.

kingcole42005

Hi Dee,
I'm sorry about your sister and what you and your family must be going through. A cancer diagnosis is terrifying, especially so for young children. You must be pretty young yourself and I can't imagine what you must be thinking. I was diagnosed with MEC Sept. 2010. I had a high grade tumor in my submandibular, on the left side under my tongue. Dr. Eisele at UCSF removed the left floor of my mouth and did a skin graft from my thigh. I was in the hospital for 10 days, with a feeding tube. I also had a neck dissection to remove the lymph nodes in my neck. I believe this is what your sister would be going through. It is tough, but it sounds like she has great support, with a big sister like you watching out for her. It is painful, but they will give her meds for that. Also she might not be able to talk for awhile, I used a pad of paper constantly. She might have to have radiation. They will fit her with a special mask that holds her in place while a machine radiates the cancerous area. The radiation does cause alot of discomfort and pain the longer you receive it. She will be on alot of painkillers and there are many other things to use. I'm sure there is a super thread you can look up to find all the info. I'm sorry your family is going through this and I hope she gets to feeling better soon. Take Care, Shelly

ekdennie

CLSunshine said:

Hi
Thank you for your reply and encouring words! It's great to be able to communicate with others dealing with this. I'm so glad to find everyone here. I look forward to reading Tommy's posts.

I don't really know what the plan is yet. My oral surgeon removed the bump thinking it was completely benign, so I don't think he was concerned with clear margins at removal of it. My report says it is invasive of the peripheral margin and very close to the deep margin. I'm not exactly sure what that means, but it sounds like they may need to remove more tissue? I am scheduled to see a specialist in May and between now and then I am to have any tests that he wants run - I should find out next week what I tests I am scheduled for. My tumor was really small (.4 cm), so I hope that it hasn't spread anywhere. Of course, I can't help but be worried what they will find in the tests.

I have a 4 year old little girl and just doing the every day normal things with her is keeping me positive. I am a fighter and will get through this, as will you!

Thank you again for your reply. I'll be back often and would like to keep up on how things are going with you. Take care and best wishes to you and your family.

hello
hello CLSunshine! I am so sorry that you found yourself in a position where you needed this website, but I am so very thankful that you found it! The group of people on here have been a blessing in my life and I hope that they will be one in yours too. It is a wonderful blessing that you noticed the bump and that you had a doctor who, despite it's size, sent you to have it looked at. I can help you a little with what your report says, but I am not a doctor so you will need to double check with him/her. invasive of the peripheral margin means that they did not remove all of the tumor on at least one edge of the tumor and close to the deep margin means that although they removed it all (depth-wise) that they did not have what is called a clear margin. clear margins are usually an amount of tissue greater than the tumor. for example, if your tumor was the size of a ping-pong ball, they would take enough material to make it the size of a golf-ball when you put the tumor and clear tissue together. the clear margins help decrease the likelihood of regrowth.
with MEC's, the best way to prevent regrowth is with a clear margin. in most cases, unless you have an intermediate or high grade tumor, you won't need any more treatments...they will examine you often to make sure it isn't growing back and that others do not appear.
I am also a fighter...my kids were 4, 2, and 4 months old when I was diagnosed. I got up every day (other than post surgery) during radiation and made sure to send my son off to pre-k. I would make his lunches, pack his backpack, wave goodbye and then go back to sleep. I would go for my radiation treatment, take a nap, then wake up to give him a hug when he came back home...then back to bed. my children kept me going through it all...when I wanted to just give up and not eat, my kids would be why I would eat. through all of my treatments (surgery then radiation), my kids were my motivation...I decided early on what sort of example I wanted to make for my kids. I wanted them to look back and if they remembered anything, to remember that , yes mommy was sick, and yes mommy had to rest a lot, but mommy also hugged and kissed them every day and that I was never too tired for them. I still get tired from time to time...but that could be because I now have four kids! three months after I finished radiation I discovered that I was pregnant...after freaking out, wondering if the baby and I would be okay, I was told that it would be fine (I had not had chemo). i recently had a PET scan that showed that I have no regrowth, so for now I am dancing with NED (no evidence of disease) and enjoying every moment with my kiddos!
I wish for you the best and a huge hug! the wait really is the hardest part...I will pray that yours has not spread and that yours can easily be removed with surgery (if your doctor feels it is necessary). I am not online as often as I was awhile ago, but I will try to check up on you!
hugs!

CLSunshine

ekdennie said:

hello
hello CLSunshine! I am so sorry that you found yourself in a position where you needed this website, but I am so very thankful that you found it! The group of people on here have been a blessing in my life and I hope that they will be one in yours too. It is a wonderful blessing that you noticed the bump and that you had a doctor who, despite it's size, sent you to have it looked at. I can help you a little with what your report says, but I am not a doctor so you will need to double check with him/her. invasive of the peripheral margin means that they did not remove all of the tumor on at least one edge of the tumor and close to the deep margin means that although they removed it all (depth-wise) that they did not have what is called a clear margin. clear margins are usually an amount of tissue greater than the tumor. for example, if your tumor was the size of a ping-pong ball, they would take enough material to make it the size of a golf-ball when you put the tumor and clear tissue together. the clear margins help decrease the likelihood of regrowth.
with MEC's, the best way to prevent regrowth is with a clear margin. in most cases, unless you have an intermediate or high grade tumor, you won't need any more treatments...they will examine you often to make sure it isn't growing back and that others do not appear.
I am also a fighter...my kids were 4, 2, and 4 months old when I was diagnosed. I got up every day (other than post surgery) during radiation and made sure to send my son off to pre-k. I would make his lunches, pack his backpack, wave goodbye and then go back to sleep. I would go for my radiation treatment, take a nap, then wake up to give him a hug when he came back home...then back to bed. my children kept me going through it all...when I wanted to just give up and not eat, my kids would be why I would eat. through all of my treatments (surgery then radiation), my kids were my motivation...I decided early on what sort of example I wanted to make for my kids. I wanted them to look back and if they remembered anything, to remember that , yes mommy was sick, and yes mommy had to rest a lot, but mommy also hugged and kissed them every day and that I was never too tired for them. I still get tired from time to time...but that could be because I now have four kids! three months after I finished radiation I discovered that I was pregnant...after freaking out, wondering if the baby and I would be okay, I was told that it would be fine (I had not had chemo). i recently had a PET scan that showed that I have no regrowth, so for now I am dancing with NED (no evidence of disease) and enjoying every moment with my kiddos!
I wish for you the best and a huge hug! the wait really is the hardest part...I will pray that yours has not spread and that yours can easily be removed with surgery (if your doctor feels it is necessary). I am not online as often as I was awhile ago, but I will try to check up on you!
hugs!

Hello
Thank you so much for your reply! You certainly are a blessing! I have been searching and searching online trying to figure out exactly what my report meant and what treatment might be needed for my particular situation and you have given me the best information - thank you! I kind of expect that it might involve another surgery since my oral surgeon wasn't going for clear margins - he thought what he was removing was completely benign.

You are such an inspiration and certainly a fighter going through all of that with 3 little ones. I get a little stressed and worried at times wondering what they might find, but when I look at my little girl and spend time with her, it all goes away. They definitely give you a boost like nothing else can!

Thank you so much for the prayers!! I have my scan on 5/7 and meet with the specialist on 5/11. I will let you know what I find out. I look forward to keeping in touch with you. God bless you and your family...and HUGS to you too!

CLSunshine

LeoS2323 said:

Hi ekdennie
Hi Elizabeth

I just wanted to say I found your posts really inspirational - as someone who has tackled the same cancer at a similar age (I am 34) and with a young family (I have a little girl aged 3 and a little boy aged 17 months) I take comfort from you having beaten it and come out the other side.

I hope to get to where you are someday, able to look back on having won!

You must be brave to have another little one though, two are tough enough for me even without this business! Four I take my hat off to anyone for managing.

Like your MEC mine has been graded as intermediate, although the oncologist thought the behaviour (speed of development and size, not lighting the PET scan up) are towards the low end. One thing I couldn't believe was that you had yours for over 5 years!

If the situation is as it was when I had my PET scan just before Christmas and as the doctors think it is then I can handle it and take it on. I guess I have been most scared that in the 2 months from the PET to the removal of the met that it might have gone somewhere else like a kidney or something and made things totally different.

I suppose in the grand scheme of these things and the length of time these things can take to develop 2 months isn't much time - especially as it hadn't done much in 4 months from the metastatic node appearing to when I had the PET scan, so little they missed it.

The oncologist is sending me for an MRI of my head and neck area next as I have had PET already and MRI is the only scan I haven't had yet. I think his main aim in doing this is to try to find the primary which is hiding.

He doesn't seem to be worrying it could have moved elsewhere which is encouraging, and said that he thought it to be 'single figure' chances in my case it has moved to any other nodes apart from the one I had removed which also sounds good.

Nonetheless he is taking all those nodes on that side of my neck out in a few weeks just to make sure, I guess better safe than sorry! We don't need them all anyway I suppose..:)

Thanks for your posts Elizabeth, they have made me feel better today and I really appreciate it. Its great to hear the good stories when you are just starting out!

All the best

Leo

Surgery
Hi Leo,

When is your surgery - or have you had it already? I was rereading some posts here and just wanted to check on you. I'm still fretting my scan and appointment - I can sure sympathize with your worry from the time of the scan to the surgery. I will say a prayer for you. Peace to you and your family.