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Mucoepidermoid carcinoma, grade II

dee248
Posts: 5
Joined: Feb 2012

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's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

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's picture
ekdennie
Posts: 231
Joined: Aug 2010

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!

dee248
Posts: 5
Joined: Feb 2012

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.

CLSunshine
Posts: 8
Joined: Apr 2012

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!

mbm
Posts: 2
Joined: Dec 2009

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's picture
tommyodavey
Posts: 351
Joined: Nov 2011

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
Posts: 5
Joined: Feb 2012

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?

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

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.

CLSunshine
Posts: 8
Joined: Apr 2012

Hi Dee,

How is your sister doing? I hope all is well and will say a prayer for her. Take care.

dee248
Posts: 5
Joined: Feb 2012

Hiii, I'm sorry my response is so late. To say things have been crazy is an understatement. My little sister just had her 6 month check up following her April surgery and she is doing great.

Her surgery turned out better than expected. She ended up not having a hole since her sinuses were so little (the only upside to being young) and did not require a mouth guard. Recovery was awful. She was in a lot of pain and not able to eat for almost 3 weeks. Her thigh was super painful and required the longest healing time. Walking was a challenge. Did anyone else need a skin graft from another body part?

Her follow up scans are still a scary thing basically waiting to see if any of the cancer is back. She's gotten sick way more than ever and don't know if it's related to her surgery or not. She also get headaches more frequently now.

To all the people who've had surgery, has your cancer come back at all? Her surgeon said the chance of reoccurance is lower when she reaches 5 years post surgery.

Thank you all for your kind words and emails. It's been the hardest thing to watch my little sister battle something so severe and we've never had a cancer in our family before. It's reassuring knowing there is a place to talk and sometimes vent about this.

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I did have a skin graft taken from my thigh. It is painful, but endurable. Pain meds helped that is for sure! It is scary waiting for the results of the scans, but the longer out you are from your surgery the easier it gets, at least for me it has. Your memory fades a bit. I am two years out from my surgery, January 14, 2010 is my last rad date. I had appt today with the surgical onco, I still have some issues with bones dying in my mouth from the rads, but other than that outlook is great. I bet it is for your sister too! I also had high grade MEC, so we just gotta keep pluggin along and take life one day at a time. Live every day with Joy and gratitude!

dee248
Posts: 5
Joined: Feb 2012

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?

gpmav
Posts: 8
Joined: Mar 2012

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's picture
ekdennie
Posts: 231
Joined: Aug 2010

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
Posts: 143
Joined: Mar 2012

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
Posts: 8
Joined: Apr 2012

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.

CLSunshine
Posts: 8
Joined: Apr 2012

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.

LeoS2323
Posts: 143
Joined: Mar 2012

How are you getting on? It is a difficult stage the waiting - very frustrating. I hope you are coping ok - how is the little one?

I had my surgery last Monday, still in hospital as I had a little complication but nothing too major. My drain has just been taken out and I should be going home tomorrow. The neck dissection looks dramatic with a big scar, but the tonsil is definitely the most painful aspect of the surgery.

With the painkillers it's still tolerable though, I'm sure many people have worse. My surgeon used a special 'transoral' laser for my tongue biopsy as it is a clinical speciality of his and that is much less sore.

I have missed the kids - desperate to see them but didn't want them to be scared or worried by the big scar and the drain etc. so my wife hasn't brought them in (plus UK hospitals are ridden with MRSA etc). The good news about my staying in this long is they will take out my staples before I go - I was worried they would scare Charlotte! She is 3 but very switched on, she wouldn't have liked them at all!

Surgery can be quite tough, but we heal from it and I think my team are trying to help me avoid treatment if they can. If my neck nodes are clean then the chances are I will for now. I get the feeling my oncologist thinks they will be based on my scans etc. But wanted to do this to be safe as there could just be a couple of cells escaped into other nodes which a scan doesn't pick up.

The other bits were typical places an MEC primary could turn up.

With MEC there is a chance the original node could have actually been the primary. Or my immune system could have killed the primary off. I may already be cured but I expect that isn't the most likely scenario. I just hope for clean results next week from this operation because that will put me in a really, really positive position. I won't regret having it done if so or feel that I have gone through this for nothing because I wanted to be safe.

When are your scan and results? Please do keep me updated, I am just a step ahead of you so will do my very best to help you know what comes next. We are both young parents - too young for this! But our little ones will help us find the courage to make it through and beat, this. Don't forgets MEC is a very curable form of cancer, it is generally what he calls 'indolent' and not prone to spreading.

If you look up salivary gland cancer on the American cancer society website, it actually says 'advanced' salivary gland cancer is so rare they are still in the clinical trials stage for chemotherapy (basically it doesn't usually get past surgery and radio).

The most likely place it moves is your lymph nodes but it seems yours hasn't even got there yet as you don't have a neck lump do you? If not you should be in a great position to beat this. I'm not your doctor so don't know your exact circumstances but my oncologist is an amazing guy - an H&N oncology professor who actually sits on panels that make national policy decisions in the UK - so I'm passing on what he tells me about our form of cancer in general as it may be of comfort (it has a been to me!).

He has called my situation 'incredibly' and 'eminently' curable on several occasions and I'm taking huge encouragement from that.

All the best

Leo

CLSunshine
Posts: 8
Joined: Apr 2012

Hi Leo! So glad to get an update on you and glad your surgery went well. I assume you are now back at home with your family and healing up. How are your little ones? I bet very happy to have their Dad home!

Since I last posted on here, I've had my CT scan, visit with the specialist and surgery just yesterday. I'm very lucky mine was so small and caught so early. Even as small as it was, they had to take more than expected to obtain clear margins - they had to scrape bone and cut a little into the soft palate. Right now I have a small hole in there that will allow liquids to come out my nose, but they said it should heal up completely - worse case I'll have a very tiny hole. It hadn't spread at all, so I should now be cured. I'll have to have a check-up in two weeks and another CT scan in 2 months as a base for my new 'normal'.

Sounds like we both have very good doctors. My doctor is nationally recognized for dealing with these types of tumors. He has written a book and several chapters in text books. He also told me we're going to cure this. And said I was very fortunate to have caught it so early. I definitely had it easier than many others with this.

I'm so glad to be on the recovery side now and I know my little girl is also relieved. Even though we were very careful not to say too much, it still caused her some worry.

I hope you are enjoying being on the recovery side too. All the best to you and your family! Stay in touch.

Cindy

LeoS2323
Posts: 143
Joined: Mar 2012

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

CLSunshine
Posts: 8
Joined: Apr 2012

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
Posts: 143
Joined: Mar 2012

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
Posts: 8
Joined: Apr 2012

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.

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

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
Posts: 8
Joined: Apr 2012

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!

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

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

Rachel_Lynn
Posts: 1
Joined: Apr 2012

My 23-year-old son was diagnosed with MEC high grade last March. His was also submandibular. We live in Texas so we have been making the three hour drive to MD Anderson Cancer Center in Houston. It is supposed to be one of the best cancer centers in the United States. He just had his surgery last week. He will have to use a flouride tray everyday from now on. He will start his radiation treatment soon and that is going to last for six weeks. It was such a shock to hear this news! His cousin who is also 23 has been dealing with Hodgkin's Lymphoma since August of 2010. I have been so worried about this. I can't sleep good at night. He told me this morning that people take life for granted and when something like this happens, it makes you realize just how quickly your life can be turned upside down. He told me he will never take it for granted again. And, that he will appreciate everyday that God has given him.

LeoS2323
Posts: 143
Joined: Mar 2012

So sorry to hear of two so young having to deal with cancer. I feel hard done to at 34 years old, but 23 is crazy young and will make them grow up way before they should.

I wish them both the very best in their recoveries.

Leo

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

We both went through almost the same stuff for MEC. And now we even look the same! Your swelling will go down fairly fast so don't fret. If you want to see what mine looked like after surgery, go to my expressions page. I posted some pictures there.

Heal Well my UK Friend,

Tommy

LeoS2323
Posts: 143
Joined: Mar 2012

Hi Tommy

Yes your case and mine seem to be following a very similar path! For what it's worth I'm glad the individual whose experience has been most similar to mine is such a positive, encouraging person as you are! Excellent role model for me in this.

I will have a look at the scar and try to post pics of mine. I am on my way home shortly. I had my staples out this morning and the scar doesn't look anywhere near as dramatic! Very excited about seeing the ids very soon!

How is your post rads situation coming along tommy? Taste etc?

All the very best

Leo

LeoS2323
Posts: 143
Joined: Mar 2012

I noted your tumor was found BOT. My discharge sheet notes 'prominent lymphoid tissue at left Tongue base'. Maybe they found it?

That would be a good thing, finding the 'unknown primary'. At least we could move forward with a definite plan and hopefully cure it for good.

Kind of strange hoping for them to find cancer! :-) results tomorrow so we will see...

All the best

Leo

Mrs. Sarge
Posts: 198
Joined: Apr 2012

Leo, glad you're going home....I'm still waiting for my journey to begin, next Monday!!
Stay positive!!!

phrannie51's picture
phrannie51
Posts: 3618
Joined: Mar 2012

It's homeward bound for YOU!! Great news :). I know exactly what you mean about being glad they may have found the "unknown primary"....I had nervous days before going to find out about the PET, since my ENT couldn't see anything when he scoped me....I hope that's precisely what it means on your discharge papers...

BTW...have you even flown a kite? :) Ditto did that, and I'm still smiling about it...if you haven't you have time before rads begin...

p

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

Leo,

I finished on April 3rd and really expected to be in good shape by now. For the most part I'm doing well. My taste buds came back to about 80-90% just a few days ago. Sweet is still not operating correctly.

A few throat sores popped up last week so the Magic Mouthwash is still being used, but overall my eating is almost back to normal. My cough is getting better and better by the day. Kept aspirating for so long I think some liquid got down into my lungs somehow. I have a sharp pain below my right breast that feels just like Pleurisy. I had it as a teenager and know what it feels like. Last time I had a bout with bad Bronchitis so that explained that. This one I'm not sure, it could just be a pulled muscle from coughing so hard. Wednesday I see my Rad Onc and will mention it.

The healing is slow and I'm impatient. Just the last two days I haven't felt the need to take a nap during the day so now I want to go to work again. My wife says "chill baby" and I'm a good obeying husband so I'll take it easy for a bit longer.

So they think the primary may be BOT? Yes, I agree it would be best to know where it is and remove it. Then you can move on to a complete recovery. If not, the radiation will kill whatever is left. Are you getting Rads?

Glad to hear you're healing well,

Tommy

LeoS2323
Posts: 143
Joined: Mar 2012

Hey Tommy

Sounds like you are coping with everything with your usual calm assurance! Glad the cough is improving and a good proportion of your taste is back, and I hope the right sided pain doesn't prove to be anything too major.

Looked at your scar pics - interesting to see yours went right across both sides, but wasn't it just one side that was dissected? There are some differences in the dissections we have had, as yours was a 'radical' and mine was 'selective'. I looked up the differences and it seems the selective spares certain nerves while the radical doesn't. Not sure I understand why this is, surely they should always be trying to spare nerves and function? I couldn't find anything to explain in simple terms why some have to be radical (this does explain the differences in our shoulder function post surgery).

My surgeon was very thorough with the nodes - he went right from level I to level V so every level, but my function remains near perfect bar a little stiffness. The tonsil and BOT were extremely sore yesterday, almost unbearable to be honest. But I slept deep being back in my own bed and woke feeling like I had done done healing this morning - hopefully the pain has peaked but I'm not counting on it!

With regards to the rads - I will know today. All my scans have shown nothing basically - PET, MRI, CT. no other nodes outside normal ranges, no sign of the primary. So there are several directions it could go. Perfect outcome - no spread to any other nodes, they find a tiny primary and removed with clear margins so no treatment may be cured. Other possible outcomes are: nothing found at all for which he had recommended no treatment, monthly checkups and annual PET scans to monitor me. If a few cells escaped into any other nodes aside the one they removed I will be having rads to the neck to be safe. If they found the primary and it's a bit bigger then I will be having rads to wherever it is they find it.

Out of interest am I right in saying you didn't get the PEG? Unless my onc suggests otherwise I am going to try to do it without. I am 6"3 230lbs so about the size of an NFL tight end or possession receiver - I think I have the bulk to get through one lot without it and I hope one round is all I'd need.

I have my pathology results this afternoon around 5pm UK time so I will know exactly where I stand later today. Wish me luck!

All the best

Leo

Ding
Posts: 2
Joined: May 2012

Hello, my name is Michele and I'm here with my 64 year old mother Victoria. She was DX with MEC in January of this year. Her's was a small bump on the right side of her nose. She thought an ingrown pimple, it didn't go away so off the doctor she went. They said it was an infected membrane, 2 months later still there, went in & to do a biopsy, but did a rhinoplasty and the bump was still there, so 4 weeks later he did a needle biopsy to see what is was, couldn't get any thing from it. However, that ticked the bump off and it started to grow rapidly, 3 weeks after that, she went in for another biopsy, (This would be the first one!) and they found that it was cancer thinking it a common type. Two days after that she was schedule for surgery, but when we were in pre-op waiting the doctor came in to tell us it was a high grade MEC. She went in and had to have half of her nose and part of her cheek bone removed, obviously very devastating. (Even though she 64 she naturally looks 50 a beautiful lady) a week after surgery she had to go in again because the margins weren't clear, so he had to go even wider and deeper she now has a huge hole in the middle of her face. Mom had my dad cover every mirror in the house as she didn't want to see herself, not out of vanity, but shock! A week after that she went in for reconstruction,(not plastic surgery yet) they had to cut her forehead bring down the skin graft and take cartilage from both ears to help build a nose as well as 2 metal plates. (Praise God the skin graft took) they also put a stint in her eye to keep the duct from closing during radiation. While at a check up she saw her reflection & freaked saying she looked like a monster. It just about killed dad & I. 4 weeks after surgery mom went in for the CT mask for radiation, And then she noticed A screw from the plate came through her gums so she had to go back in for him to fix that before radiation could start. Then radiation wanted to do the CT mask over and this time with her mouth open, anything that could go wrong has! She has to go to the doctor weekly to have the crusties ( bugers) removed, since all her sinus's & nasal cavity has been removed. This can be painful because the doctor pulls them out while attached to the plate & skin. She has been in radiation for 10 days her radiation hits 9 different spots at 2-3 minutes each spot, that's 25 mins. Of radiation with her mouth open and she has 20 more to go. Yesterday she lost it and cried she didn't think she could do any more radiation due to her sore throat & mouth and the sores. but after prayer she felt better. This is what brought me to this site and we thank you for all of your insights They have helped Through this awful, ugly journey she feels Jesus carrying her. We are believers and couldn't get through this without Him.
I'm sure all of you have horror stories as well and I am in no way minimizing what each of you has gone through. We will be praying for all of as well.

LeoS2323
Posts: 143
Joined: Mar 2012

Firstly welcome to the forum. I have found this to be a place of great understanding and information and I hope it can be for you too.

I am one of the MEC sufferers on here, it is a rare cancer. It's hard for me to relate to what you have had to go through Victoria, it sounds like you have had a torrid time not least because of the grade and location of your tumor and the effect it has had on you physically.

The posters on here I know who have MEC are all of either low or intermediate grade as far as I know, however I believe from previous reading that MEC still has a good rate of cure even with high grade as long as it is caught early enough, which it sounds like it has it your case.

I know this is of little consolation, but the prominent place in which it has appeared at least drew your attention to it immediately - meaning it has been quickly dealt with. Are you scheduled to have a PET scan or any other type of scan on the near future?

The location of your tumor itself sounds really unusual to me - MEC is a salivary gland cancer so I didn't realise it could manifest in your nose. Did the doctors discuss this with you at all? Where is your treatment taking place? Is it a large cancer centre or a local one?

I can't see any mention of scans in your post - usually after diagnosis scans are the first thing to take place to see exactly what the situation is. The reason I ask is your process so far sounds a little unusual, but it may just be there are some things you haven't mentioned so I am trying to get the whole picture.

You really do sound like you have had an incredibly tough time. My experience with MEC and I think the majority of those here have been very different so I am just trying to understand yours a little better so I and others here can offer advice and support.

What I can offer right now is my thoughts, prayers and best wishes that you can get through this.

All the best

Leo

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

Michele,

First off, I just want to say how sorry I am for your dear mother and her suffering. Like Leo said, most of the MEC cases we've seen are of a lower grade. The doctors will be able to tell you a lot more than we can. It all sounds so complex it must be very hard to understand exactly what is going on with her.

Try to be the best support coach you can be for her right now. The radiation therapy is one of the most important treatments to get rid of her cancer. Yes it is very painful and will be hard to watch. She probably won't want to even finish it but that is where you and the family come it. It is so very important that she see this through to the end. It will end in a few weeks so just keep telling her to stick with it. All the bad symptoms of it will end some day and then she'll be glad she saw it through.

You have my thoughts and prayers in this trying time.

Tommy

P.S. Leo, no I did not have a PEG. But just do whatever your doctor says. They know best, most of the time. And it sounds like they caught yours really early. Mine had many years to grow, that explains the lymph nodes. And BTW, I think there are mucous membranes in the nose. (glands) There has to be if there was a tumor there. A lot of salivary glands are very small, like the ones on the BOT. Mine was a weird place too.

LeoS2323
Posts: 143
Joined: Mar 2012

Hey Tommy - I guess that question is slightly out of date since my good news!

But of course some time in the future I may still have to make that choice, so thanks as ever for the advice.

All the best my friend - and that spicy stuff will be on the menu soon...:-) I love the really hot stuff myself, my wife puts fresh chillies in many of her creations so I will make sure to max out on it just in case (as soon as the mouth is back to normal operations - the BOT is still a little sore although the tonsil is pretty much fully healed now.

As a nation we are bigger on spicy Indian curries than Mexican over here, although I personally love Mexican too.

Leo

Ding
Posts: 2
Joined: May 2012

Thanks for responding. We live close to Loma Linda University Medical Center so this is where mom's treatments are taking place. They are using proton to boost radiation. She has not had a PET scan yet, that is one of questions we will ask today with The Dr. Thanks, Michele

rlcombs70's picture
rlcombs70
Posts: 2
Joined: Sep 2012

My 23-year-old son was diagnosed with this last March. He had his first surgery in Dallas with his ENT doctor. That was when they told us what it was. We got him into MD Anderson in Houston where he had a second surgery to remove what was left behind. He went through six weeks of radiation. We recently went back to MD Anderson for his checkup and CT scan last week. I wasn't expecting anything but good news since he had the two surgeries and the radiation. The doctor told us that there was a lump on the scan that needed to be biopsied. The doctor did the biopsy on that lump and on a lymph node that he said looked a little enlarged. Both came back positive for cancer. I have been a total basket case. No parent wants to see their child go through this! He is having the same surgery you had. It is being done on October 15. The doctor said he would have to get skin grafting, the feeding tube, and he also mentioned a temporary tracheotomy. I have been so scared. He hasn't been eating good at all. His sister calls me randomly throughout the day crying, and his younger brother has asked me a few times if he is going to die. This whole thing has been a nightmare!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

So sorry you are having to endure this...

I'm sure you already know, MD Anderson is tops in this area your son is experiencing...
..also, there are many survivors on here...as you can see if you poke through just the 1st page of threads...

....I lost my Dad and brother the same year to cancer, and then I had to tell my five children ages 2 - 13 I had cancer Base of Tongue Stage III.

Now I am 8 months past my last radiation and I have been given NED (no evidence of disease) ...there is another guy on here (names Pat, longtermsurvivor is his screen name) and boy has he been through it 3 TIMES, the first time 10 years ago..and guess what, his most recent time was only 7 or 8 months ago and he too is NED!!

I won't pretend it's not scary and there are no words, I was fortunate that it was me with cancer and not one of my kids, so I won't pretend I can relate...but my heart goes out to you and I whispered a prayer for your son (and all of you his family) right before I hit the post button.

Keep us posted,

Tim

rlcombs70's picture
rlcombs70
Posts: 2
Joined: Sep 2012

My son lost his battle with MEC last Wednesday. He had the high grade type. He was only 24. 

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

I am sorry or your loss.

Thoughts and prayers,

Matt

KTeacher
Posts: 882
Joined: Jan 2011

I cannot even imagine what you are going through.  He was so young.  Thankfully he had his family supporting him throughout.

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Prayacres for you and your family during this time.  As a mom, i will be lifting you up.

Wishing you peace at this time,

Christie

TracyLynn72's picture
TracyLynn72
Posts: 642
Joined: May 2013

This truly hurts me to read.  I am very sorry and will keep you in my prayers. 

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

my heart breaks for you!  keeping u and ur family n my thots and prayers.  God bless you.

dj

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

Words cannot express how extremely sorry I am for your loss.  Prayers going up for you and your family.

~Shawn~

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