Mucoepidermoid Carcinoma
Comments
-
Welcome.
Welcome to our special club McKenzie, sorry you find yourself
here but you will be sure glad you did. The Members on here
have an abundance of knowledge they will offer help, support
and so much positiveness ( if thats a word).
Iv'e just finished treatment for ST 2 Tonsil cancer HPV+
Stay strong ,Have faith and stay positive and this will
be a distant blur as you carry on the rest of your life.
God Bless
Tonsil Dad,
Dan.0 -
Hi Mckenzie ...Tonsil Dad said:Welcome.
Welcome to our special club McKenzie, sorry you find yourself
here but you will be sure glad you did. The Members on here
have an abundance of knowledge they will offer help, support
and so much positiveness ( if thats a word).
Iv'e just finished treatment for ST 2 Tonsil cancer HPV+
Stay strong ,Have faith and stay positive and this will
be a distant blur as you carry on the rest of your life.
God Bless
Tonsil Dad,
Dan.
Well this site is GREAT. You will see soon how mamy people will post their experience and give you lots of great advice. Some have links (like John) that are great ....some are even in the medical field.
One thing I can tell you to do is go to oralcancerfoundation.org where you can find a wealth of informaiton ...but you will not get the personal support there like you will here...however information is good to have too.
Huntsman is a great place to go ...I got my treaments just north of you in Boise, Idaho at the MSTI Clinic.
We can all give our stories and will...but for now just know this is very curable and you can beat this ...and there are many survivors on here to prove it .....the bigest fear is of the unknown ...so educate yourself and remember "as many on here have said" your fear of the unknown is as bad as it gets ...it usually is not as bad as you thought
Put your bio up so we can see what's up ..click on our names and most of our bio's are there for you to see. I am 4 months post treatment from Base of tongue Cancer stage III with one lymph node involved ...HPV +
Keep us posted ...prayers for you McKenzie ...
Tim / Idaho0 -
McKenzie...
you have tapped into a wealth of knowledge and support by finding this forum....I'm so glad you found it!
I don't have the same kind of cancer as you, so I can't help in terms of what happens in treatment....but I know there are others here who do, and will be checking in to help.
One thing I can tell you...it was the best advice I got here in the very beginning....stay off of Google, at least until you get your feet under you.
p0 -
Thanks everyone forphrannie51 said:McKenzie...
you have tapped into a wealth of knowledge and support by finding this forum....I'm so glad you found it!
I don't have the same kind of cancer as you, so I can't help in terms of what happens in treatment....but I know there are others here who do, and will be checking in to help.
One thing I can tell you...it was the best advice I got here in the very beginning....stay off of Google, at least until you get your feet under you.
p
Thanks everyone for responding. Im am freaking out a little bit. I am 23 with 3 young children and I got married last year.My life is just begining and this was very unexpected. Im glad there are others who can be suppotive and help me through this. I have my first appt. with an oncologist tomorrow and im nervous about getting staged.0 -
Never Fear...Under Dog Is Here....LOLMcKenzie1 said:Thanks everyone for
Thanks everyone for responding. Im am freaking out a little bit. I am 23 with 3 young children and I got married last year.My life is just begining and this was very unexpected. Im glad there are others who can be suppotive and help me through this. I have my first appt. with an oncologist tomorrow and im nervous about getting staged.
Hi McKenzie & Welcome to the family....
I don't really think it's ever expected. But yes your age is one of the minority here. But you are definitely not alone... There are other newly weds, young mothers and young women here...
But, on a positive note, that also means more than likely (like I always said, LOL), "Other than having cancer, Im in perfect health"...
Staging is all part of the process, it's also a base for comparison to others whom have tread the road before you. It gives the MD's the best shot of prescribing the best treatment for you stage and circumstances.
It also serves as a base for your starting point, and progress as well.
Don't be afraid of cancer, embrace it, learn about it, find it's strengths, find it's weaknesses.... Then kick the **** out of it....LOL.
Myself, I was Dx January 2, 2009...STGIII Tonsils SCC HPV+, and a lymphnode. Nine weeks of induction chemo, and an additional seven weeks of concurrent and 35 daily radiation sessions. Clean and clear since treatment ended in June 2009.
Here is a link to the SuperThread;
SUPERTHREAD
A thread started and compiled by Sweetblood22 (Dawn), consisting of many great limks, posts, recommendations, and communications from many of the survivors here.
Best advice short-term for tomorrow...
Take someone with you that can take notes for later, you won't remember crap.
Oh, and hopefully you have a little sense of humor, you're gonna need it for a few members on here such as myself.
Thoughts & Prayers,
John0 -
MECSkiffin16 said:Never Fear...Under Dog Is Here....LOL
Hi McKenzie & Welcome to the family....
I don't really think it's ever expected. But yes your age is one of the minority here. But you are definitely not alone... There are other newly weds, young mothers and young women here...
But, on a positive note, that also means more than likely (like I always said, LOL), "Other than having cancer, Im in perfect health"...
Staging is all part of the process, it's also a base for comparison to others whom have tread the road before you. It gives the MD's the best shot of prescribing the best treatment for you stage and circumstances.
It also serves as a base for your starting point, and progress as well.
Don't be afraid of cancer, embrace it, learn about it, find it's strengths, find it's weaknesses.... Then kick the **** out of it....LOL.
Myself, I was Dx January 2, 2009...STGIII Tonsils SCC HPV+, and a lymphnode. Nine weeks of induction chemo, and an additional seven weeks of concurrent and 35 daily radiation sessions. Clean and clear since treatment ended in June 2009.
Here is a link to the SuperThread;
SUPERTHREAD
A thread started and compiled by Sweetblood22 (Dawn), consisting of many great limks, posts, recommendations, and communications from many of the survivors here.
Best advice short-term for tomorrow...
Take someone with you that can take notes for later, you won't remember crap.
Oh, and hopefully you have a little sense of humor, you're gonna need it for a few members on here such as myself.
Thoughts & Prayers,
John
Hi McKenzie,
First off, Welcome to the forum. Now let me say I'm sorry you have to go through this at such a young and vibrant age. If you've done some research then you already know that MEC is a very rare salivary gland cancer that affects young children and mostly women in their 50's. It is also quite curable most of the time. Once you know the grade then they will tell you the course of action.
I too had MEC and just finished treatment last April. Almost the same as you except my tumor was on the base of my tongue. Plus I had a swollen lymph node which it had spread to. My guess is you've caught this at an early stage and your treatment may be less than I had. Hard to say until they know what they're dealing with. Yes, the waiting will drive you nuts! It took me almost three weeks until my tumor was biopsied and diagnosed. My wife and I were worried sick until we found out the grade.
If you click on my name you'll see my profile which explains everything I went through.
All you can do is wait for a biopsy and probably a PET scan to better determine what exactly you have. (I am guessing here) Try not to worry too much. (yea right)
Tommy0 -
MEC
Dear McKenzie1,
I am so sorry to have to meet you this way, but I am so happy that I might be able to help. I was diagnosed with MEC of the hard palate just under 2 years ago. I also had three young children (ages 4, 2, and 4months). I was 31.
The first thing to know is that every one has different stories as we all have different tumors and we all respond differently to treatments. I can tell you what I went through, but it does not mean that you will go through the same things. I am also not a doctor, just a mom who read everything she could so I would know what was coming my way.
second, MEC is very survivable. there are no risk factors for it. you can be any age or any gender to get it. it is not believed to be genetic and there is nothing you could have done differently to not have gotten it.
MEC's are ranked in two ways, one is stage the other is grade. both are important to ask about to help determine your course of treatment. grades are often divided into three groups, although some only divide it into two. those are low, intermediate, and high grade.
recommended course of treatment for low grade is surgery, possibly with radiation and/or chemo as well, but this depends on the stage.
intermediate grade is often treated with surgery and radiation, possibly with chemo, also depending on stage.
high grade is often treated with surgery and radiation, sometimes chemo as well, depending on stage.
stage refers to the size of the tumor and where it has spread (if it has spread).
you will see it in this format T#N#M#, T stands for tumor, N stands for lymph nodes, and M stands for metastasis (or how far spread).
In my case I was actually staged twice and I was given two different grades. based on my biopsy I was told that I was low grade. based on the size of my tumor (about the size of a ping pong ball) I was staged at T4N0M0. this was my clinical staging (stage IV). then after my surgery I was given a final pathology report. on this I was told that my tumor was Intermediate grade and was a T2N0M0. so I have a pathological staging of stage II.
due to the intermediate stage it was recommended that I also undergo radiation treatment in addition to my surgery, even though I had clean margins. I had 30 treatments over the course of 6 weeks.
when looking at all of these numbers and hearing about all of these stages and grades it can be very difficult and depressing. It was hard for me to feel up to the fight when I would look at percentages and numbers. it was a lot easier to look at my kids and to think, how do I want them to remember this blip in our life. do I want them to remember me as someone who was sad all the time or did I want them to remember that their mother fought with everything she had to be upbeat and cheerful around them, to let them know that "although I might have cancer, cancer was not going to have me". I lived each day thinking those words. I wrote them on a piece of paper and taped it to my mirror in my bathroom...it is still there. I needed help, my mom even moved in with my husband and I and our children to help when I got too tired and too weak to do it all myself (due to radiation), but I still got up each day to make my son's lunch for pre-k, to give him a hug and kiss, and to wave goodbye as my mom drove him to school and then again to give him a hug the moment he walked in the door from school.
I know I have written a lot, but I have something else that I feel is important for you to know. 3 months after I finished radiation treatment I found out that I was pregnant with my fourth child. she is perfect is every way. there is life after cancer. having cancer will change you, but it really is up to you as to how you let it change you. in my case I find myself enjoying all the little things that I didn't notice before, embracing those things that drive me crazy and being so happy that I am here to be driven crazy. I do have a hole in the roof of my mouth, but I use a mouth piece (obturator) to fill in the gap. I hope someday to have the hole closed! I was recently told that it might be possible! regardless of treatment path that your doctor(s) send you on, you will find the way to create your "new normal". it can be rough thinking about how things were, but for your sake try not to do that too much. hugs!
You are stronger than you could ever imagine. I am sending with this message a giant HUG, because sometimes we just need a hug. You will be in my thoughts and prayers. Please let me know if there is anything more specific you need info on. I will do my best to help. I am not on here all the time, but I will check back more often just in case you have any questions. oh, and which part of your mouth is the tumor in and about how big is it?
elizabeth
p.s. the more help you have the better mom you will be able to be for your children. if you have surgery, you will need to heal. if you have radiation you will need to heal after that as well. I recommend planning for at least 6 weeks of recovery from each. in the case of radiation that is 6 weeks after you finish your last round.0 -
MEC / Welcome
Hi McKenzie
Firstly welcome to this site. I am so sorry you had to join us here, but this is a wonderful place to gain understanding and support. In some ways the most difficult time is post initial diagnosis when you are waiting for a proper plan and understanding of exactly where you are at. The waiting is difficult - surgery and treatment are things nobody wants to go through but you will find yourself eager to get on with it!
I share several things with you (and Elizabeth). I am also a sufferer of MEC at a relatively young age (I am 34, 33 when dx), with a young family (my little girl is 3 and my little boy is 18 months). Certainly for me the first thoughts were 'I'm not going to see my kids grow up'. When you become a parent everything revolves around them and this is no different - your first thoughts aren't of what you will have to go through but of them.
When you've had that thought and turned it over a little i would suggest you put it away in a little box somewhere and throw away the key, because you will see them grow up. Instead of being my greatest fear, I realised that my kids were my biggest motivation and far and away my greatest strength - I just wanted to fight with everything I had for them, win the battle for them. Do whatever it takes because they need me.
I woild like to tell you what i have learned about MEC. I live in England and am very fortunate to have a professor of oncology as my doctor - he is an incredible man who is involved in research into head and neck cancer as well as treating patients. I must have asked him a million questions so far and he has tried to answer them all; every case is different so I can't say exactly what your situation is but I can paint a fairly positive picture of MEC on the whole - as positive as having cancer can be anyway!
The professor told me that MEC is an indolent cancer with low biological potential. This means that on the whole it is unlikely to spread. In general terms this type of cancer advances locally before it goes anywhere else and in a recent study of head and neck patients the level of distant spread was just 4%; this means it very rarely spreads far and has to travel to the glands in your neck first anyway which generally means a lump in your neck. So if you don't have any neck lumps then this is a positive sign for you going forward.
Also the timescales - I had a neck lump and was misdiagnosed as having a cyst for 6 months. That lost time drove me mad at first and I guess you are worrying about the timescales. Again I don't know your case but my understanding is if that was there for 2 years without growing too much or spreading locally it may be a slower type - low or intermediate. One of the factors linking us MEC sufferers is as it tends not to be an aggressive cancer it can go ignored or missed for a long time. I think ekdennie said she had hers for 5 years, tommy had his for a year and I had mine for 6 months.
Anyway - overall MEC seems to be a very survivable cancer, especially in someone young and healthy like you. In my case the first I knew of this was a neck lump where it turned out mine had spread to a node - I had every test including PET all clear. The neck lump hardly reacted to the PET and there has been no sign of a primary. I had to have a neck dissection to ensure it had not spread but all my others nodes were cancer free as well as tongue and tonsil biopsies so I avoided radio and chemo so far; just going back for regular check ups.
My dissection wasn't much fun but you recover from surgery - it is painful but you can take painkillers and you will heal.
Normally the process will be something like consultation to discuss pathology report grade, stage etc first then a scan (probably PET) or scans and surgery then radio if required. This will all be tough going, but please remember that head and neck is one of the most survivable cancers out there, and MEC is far from the worst in that category. The fact is that you will beat this, and you have every right to believe that until someone tells you any different. Having a positive attitude to everything will help you to fight it, and help give you the best chance.
It is hard not to feel a bit unfairly treated getting something like this at such a young age, and due to no fault of your own. But the chances are you have a very survivable cancer and you will get through this. Please keep us updated to your progress and I'm sure everyone on here will do everything they can to give advice and support every step of the way. Good luck on this journey, there is light at the end of the tunnel and so many members on here have reached it and are enjoying life beyond cancer - appreciating it even more than they did.
Good luck with the next steps and hope to hear positive news soon
All the best
Leo0 -
MEC
I was diagnosed in 2005 after simple oral surgery to remove a tiny gum lump, thus staging was difficult. I had 6 mon old twins & 3 others (6,9,10) while living outside of Pittsburgh. I was blessed to see Dr. Eugene Meyers of UPMC, who performed radical neck dissection (I had 2 hard lymph nodes). His best advise was to limit info which could be discouraging & said positivity is miraculous. Go for a surgeon who has performed numerous surgeries and thus seen a number of cases like yours. Do prepare for soft foods after surgery-babyfood was wonderful after much soup and protein drinks. **My doctor taped a number of tongue depressors together and had me crack open my mouth daily to restore mobility (painful but worth it)**. My scar is hidden by my hair (I didn't need rad or chem-lymph nodes were benign). I did use a costly face cream developed for burns on the part of my incision that didn't scar (it lasted over 1 1/2 yrs and felt wonderful). I lost feeling on 1/2 my tongue and bite it occasionally. (While I can't chew gum, I do put bad tasting medicine on that side-no taste!) It's like childbirth-you forget the bad when you concentrate on the good. My family time was precious, my frivolous obligations disappeared, and I learned to say no. I'm glad my doctor was aggressive. Get help from anywhere you can with the children and home. Look for silver linings. Best wishes and hope you get more tips.0 -
Thank your for yourekdennie said:MEC
Dear McKenzie1,
I am so sorry to have to meet you this way, but I am so happy that I might be able to help. I was diagnosed with MEC of the hard palate just under 2 years ago. I also had three young children (ages 4, 2, and 4months). I was 31.
The first thing to know is that every one has different stories as we all have different tumors and we all respond differently to treatments. I can tell you what I went through, but it does not mean that you will go through the same things. I am also not a doctor, just a mom who read everything she could so I would know what was coming my way.
second, MEC is very survivable. there are no risk factors for it. you can be any age or any gender to get it. it is not believed to be genetic and there is nothing you could have done differently to not have gotten it.
MEC's are ranked in two ways, one is stage the other is grade. both are important to ask about to help determine your course of treatment. grades are often divided into three groups, although some only divide it into two. those are low, intermediate, and high grade.
recommended course of treatment for low grade is surgery, possibly with radiation and/or chemo as well, but this depends on the stage.
intermediate grade is often treated with surgery and radiation, possibly with chemo, also depending on stage.
high grade is often treated with surgery and radiation, sometimes chemo as well, depending on stage.
stage refers to the size of the tumor and where it has spread (if it has spread).
you will see it in this format T#N#M#, T stands for tumor, N stands for lymph nodes, and M stands for metastasis (or how far spread).
In my case I was actually staged twice and I was given two different grades. based on my biopsy I was told that I was low grade. based on the size of my tumor (about the size of a ping pong ball) I was staged at T4N0M0. this was my clinical staging (stage IV). then after my surgery I was given a final pathology report. on this I was told that my tumor was Intermediate grade and was a T2N0M0. so I have a pathological staging of stage II.
due to the intermediate stage it was recommended that I also undergo radiation treatment in addition to my surgery, even though I had clean margins. I had 30 treatments over the course of 6 weeks.
when looking at all of these numbers and hearing about all of these stages and grades it can be very difficult and depressing. It was hard for me to feel up to the fight when I would look at percentages and numbers. it was a lot easier to look at my kids and to think, how do I want them to remember this blip in our life. do I want them to remember me as someone who was sad all the time or did I want them to remember that their mother fought with everything she had to be upbeat and cheerful around them, to let them know that "although I might have cancer, cancer was not going to have me". I lived each day thinking those words. I wrote them on a piece of paper and taped it to my mirror in my bathroom...it is still there. I needed help, my mom even moved in with my husband and I and our children to help when I got too tired and too weak to do it all myself (due to radiation), but I still got up each day to make my son's lunch for pre-k, to give him a hug and kiss, and to wave goodbye as my mom drove him to school and then again to give him a hug the moment he walked in the door from school.
I know I have written a lot, but I have something else that I feel is important for you to know. 3 months after I finished radiation treatment I found out that I was pregnant with my fourth child. she is perfect is every way. there is life after cancer. having cancer will change you, but it really is up to you as to how you let it change you. in my case I find myself enjoying all the little things that I didn't notice before, embracing those things that drive me crazy and being so happy that I am here to be driven crazy. I do have a hole in the roof of my mouth, but I use a mouth piece (obturator) to fill in the gap. I hope someday to have the hole closed! I was recently told that it might be possible! regardless of treatment path that your doctor(s) send you on, you will find the way to create your "new normal". it can be rough thinking about how things were, but for your sake try not to do that too much. hugs!
You are stronger than you could ever imagine. I am sending with this message a giant HUG, because sometimes we just need a hug. You will be in my thoughts and prayers. Please let me know if there is anything more specific you need info on. I will do my best to help. I am not on here all the time, but I will check back more often just in case you have any questions. oh, and which part of your mouth is the tumor in and about how big is it?
elizabeth
p.s. the more help you have the better mom you will be able to be for your children. if you have surgery, you will need to heal. if you have radiation you will need to heal after that as well. I recommend planning for at least 6 weeks of recovery from each. in the case of radiation that is 6 weeks after you finish your last round.
Thank your for your response. I really appreciate it. You have given optimism that I never had. The tumor is on the upper left portion of my hard palate. It is 5 cm. I had my first appt with the oncologist in order to stage the cancer. They believe it is intermediate because of the size. I will deffinately have to have my back 2 molars removed during surgery. I go back next weds. to discuss the results of the blood work and CAT scan. AfterI get that info we will move forward with treatment. This may sound shallow of me but I am very nervous about my appearance changing. My husaband is very supportive and ensures me that the way I look will never affect the way he feels about me, but the thought of having my face cut into terrifies me! I currently work at a day care but the buisness is closing down June 8th. I believe this to be a blessing in diguise so I can spend time with my family and recover.
Thanks
McKenzie0 -
Hi Mckenzie....McKenzie1 said:Thank your for your
Thank your for your response. I really appreciate it. You have given optimism that I never had. The tumor is on the upper left portion of my hard palate. It is 5 cm. I had my first appt with the oncologist in order to stage the cancer. They believe it is intermediate because of the size. I will deffinately have to have my back 2 molars removed during surgery. I go back next weds. to discuss the results of the blood work and CAT scan. AfterI get that info we will move forward with treatment. This may sound shallow of me but I am very nervous about my appearance changing. My husaband is very supportive and ensures me that the way I look will never affect the way he feels about me, but the thought of having my face cut into terrifies me! I currently work at a day care but the buisness is closing down June 8th. I believe this to be a blessing in diguise so I can spend time with my family and recover.
Thanks
McKenzie
You will certainly need time to recover ....plan on at minimum 6-8 weeks after your last treatment (it took me almost 2.5 months to go back to work) and really another month of light work is all I could handle....fortunately my wife is tough as nails and handled our five kids ...
Come here for great support ...but also check out www.oralcancerfoundation.org (Oral Cancer Foundation ) for some great information .......
Your on my nightly prayer list now ....so stay strong
Tim & Jennifer0
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