Just diagnosed with Mucoepidermoid Carcinoma of the Larynx
Comments
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MEC
I also was diagnosed with Mucoepidermoid Carcinoma (MEC) Intermediate Grade Clear Cell Variety (stage 2 after surgery based on pathology, stage 4 pre surgery or clinically), but mine was on my hard palate and grew into my maxillary sinus (golf ball sized). I was diagnosed jun 30, 2010. had surgery to remove the tumor in august 2010 and 30 rads in oct. I was done with treatment nov 12.
MEC is fairly rare, but you will find a few people online who either have had it, or are currently battling it. some like Nkimber are not on very often right now. her MEC is near her larynx as well, but I am not sure where exactly. I am on when I get a chance, but not as often as when I was going through treatment. right now I am adjusting to my new normal and enjoying finding out how different foods taste on different days (due to some radiation side effects. if you have any questions, please just ask. I will do my best to answer. You have a rough journey before you, but you can make it through it! when things get rough just try to remember that there will be a better day someday in the future, where things are better than at that moment. it may take some time to get there, but more often than not, it does come.
FYI: complete surgical removal followed by radiation is the recommended course of treatment for MEC. some with MEC will also need Chemo if their tumor is more advanced, has spread, or if it is of a type that would respond well to that treatment. wishing you the best of luck and smooth recoveries. HUGE HUGS!
elizabeth0 -
Fortune Cookieekdennie said:MEC
I also was diagnosed with Mucoepidermoid Carcinoma (MEC) Intermediate Grade Clear Cell Variety (stage 2 after surgery based on pathology, stage 4 pre surgery or clinically), but mine was on my hard palate and grew into my maxillary sinus (golf ball sized). I was diagnosed jun 30, 2010. had surgery to remove the tumor in august 2010 and 30 rads in oct. I was done with treatment nov 12.
MEC is fairly rare, but you will find a few people online who either have had it, or are currently battling it. some like Nkimber are not on very often right now. her MEC is near her larynx as well, but I am not sure where exactly. I am on when I get a chance, but not as often as when I was going through treatment. right now I am adjusting to my new normal and enjoying finding out how different foods taste on different days (due to some radiation side effects. if you have any questions, please just ask. I will do my best to answer. You have a rough journey before you, but you can make it through it! when things get rough just try to remember that there will be a better day someday in the future, where things are better than at that moment. it may take some time to get there, but more often than not, it does come.
FYI: complete surgical removal followed by radiation is the recommended course of treatment for MEC. some with MEC will also need Chemo if their tumor is more advanced, has spread, or if it is of a type that would respond well to that treatment. wishing you the best of luck and smooth recoveries. HUGE HUGS!
elizabeth
You will find support in your fellow patients.
That sounds like something you might find in a fortune cookie. My cancer was far less serious than yours, so I cannot speak to your condition, I was treated with radiation only. But my fellow patients in the waiting area were very supportive of each other.
But on a lighter side, here is something a really did find in a fortune cookie:
"You will find love in a new position". Hope you find a cookie with that fortune in it.0 -
Thanksekdennie said:MEC
I also was diagnosed with Mucoepidermoid Carcinoma (MEC) Intermediate Grade Clear Cell Variety (stage 2 after surgery based on pathology, stage 4 pre surgery or clinically), but mine was on my hard palate and grew into my maxillary sinus (golf ball sized). I was diagnosed jun 30, 2010. had surgery to remove the tumor in august 2010 and 30 rads in oct. I was done with treatment nov 12.
MEC is fairly rare, but you will find a few people online who either have had it, or are currently battling it. some like Nkimber are not on very often right now. her MEC is near her larynx as well, but I am not sure where exactly. I am on when I get a chance, but not as often as when I was going through treatment. right now I am adjusting to my new normal and enjoying finding out how different foods taste on different days (due to some radiation side effects. if you have any questions, please just ask. I will do my best to answer. You have a rough journey before you, but you can make it through it! when things get rough just try to remember that there will be a better day someday in the future, where things are better than at that moment. it may take some time to get there, but more often than not, it does come.
FYI: complete surgical removal followed by radiation is the recommended course of treatment for MEC. some with MEC will also need Chemo if their tumor is more advanced, has spread, or if it is of a type that would respond well to that treatment. wishing you the best of luck and smooth recoveries. HUGE HUGS!
elizabeth
I go to the surgeon this coming Tues April 5...I will probably find out the course of action then....I am glad I am able to connect with people who are and have gone through the same stuff I am about to face and go through......cannot talk much right now..as I have so much to do before I take this on....I have 3 kids all under 10...so want to spend as much time with my husband and them, while I can. Thanks so much for your support and hugs! Hugs back to you and thank you0 -
Thanksekdennie said:MEC
I also was diagnosed with Mucoepidermoid Carcinoma (MEC) Intermediate Grade Clear Cell Variety (stage 2 after surgery based on pathology, stage 4 pre surgery or clinically), but mine was on my hard palate and grew into my maxillary sinus (golf ball sized). I was diagnosed jun 30, 2010. had surgery to remove the tumor in august 2010 and 30 rads in oct. I was done with treatment nov 12.
MEC is fairly rare, but you will find a few people online who either have had it, or are currently battling it. some like Nkimber are not on very often right now. her MEC is near her larynx as well, but I am not sure where exactly. I am on when I get a chance, but not as often as when I was going through treatment. right now I am adjusting to my new normal and enjoying finding out how different foods taste on different days (due to some radiation side effects. if you have any questions, please just ask. I will do my best to answer. You have a rough journey before you, but you can make it through it! when things get rough just try to remember that there will be a better day someday in the future, where things are better than at that moment. it may take some time to get there, but more often than not, it does come.
FYI: complete surgical removal followed by radiation is the recommended course of treatment for MEC. some with MEC will also need Chemo if their tumor is more advanced, has spread, or if it is of a type that would respond well to that treatment. wishing you the best of luck and smooth recoveries. HUGE HUGS!
elizabeth
I go to the surgeon this coming Tues April 5...I will probably find out the course of action then....I am glad I am able to connect with people who are and have gone through the same stuff I am about to face and go through......cannot talk much right now..as I have so much to do before I take this on....I have 3 kids all under 10...so want to spend as much time with my husband and them, while I can. Thanks so much for your support and hugs! Hugs back to you and thank you0 -
thanksdenistd said:Larynx cancer
Go to Laryngectomylife.com, you will find a wealth of info there. Denis
I will check that out Denis....0 -
I had stage four as well
I went threw what you are going to have, I dealt with rads and chemo, for a month and a half, the chemo was for 3 times. they over radiated me, and then put a implant, my L/s larnyx went dead and missed my tumor. Yeah things didn't go smooth for me, I fought the complete removal, try to get your second opinion, I have a have a voice but it's better than alot more options. the 3 rd week will be getting into the hard part of your chemo, it was for me, i quit eating, water was very hard to drink. get the tube if they offer it or ask for it, I lost 40 lbs. and nearly my life. Cancer is serious, but I feel it was the treatment that would get you take you. Have a good a good support group behind you, I didn't, family couldn't deal with it. You will beat this, please write me if needed and keep in touch, all cancers are treated differently, and the outcomes are different, but we all basically have the same problems from teh after effects, your in good hands here. Dennis.....0 -
last appointmentekdennie said:MEC
I also was diagnosed with Mucoepidermoid Carcinoma (MEC) Intermediate Grade Clear Cell Variety (stage 2 after surgery based on pathology, stage 4 pre surgery or clinically), but mine was on my hard palate and grew into my maxillary sinus (golf ball sized). I was diagnosed jun 30, 2010. had surgery to remove the tumor in august 2010 and 30 rads in oct. I was done with treatment nov 12.
MEC is fairly rare, but you will find a few people online who either have had it, or are currently battling it. some like Nkimber are not on very often right now. her MEC is near her larynx as well, but I am not sure where exactly. I am on when I get a chance, but not as often as when I was going through treatment. right now I am adjusting to my new normal and enjoying finding out how different foods taste on different days (due to some radiation side effects. if you have any questions, please just ask. I will do my best to answer. You have a rough journey before you, but you can make it through it! when things get rough just try to remember that there will be a better day someday in the future, where things are better than at that moment. it may take some time to get there, but more often than not, it does come.
FYI: complete surgical removal followed by radiation is the recommended course of treatment for MEC. some with MEC will also need Chemo if their tumor is more advanced, has spread, or if it is of a type that would respond well to that treatment. wishing you the best of luck and smooth recoveries. HUGE HUGS!
elizabeth
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support0 -
Voice boxVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
I had SCC of my larynx, fortunate at the time it was not too far along, either late stage 2 or early stage 3. Doctor's recommended rads and chemo. Having a laryngectomy is a real life changing event, but I know a lot of people that have had this and lead a great life now. there is a girl in Toronto named Julie. She was 19 when she had her laryngectomy, she is now a top model and has appeared dancing in some rock music videos. Imitation voice technology has advanced so much over the past five years. If you do indeed have to have the laryngectomy, definitely go to Laryngectomy life and web whispers. I hope they can go with the rads and chemo. I have recovered great, my voice is back, returned during treatment, I live life to the full with only teeth problems (being resolved at Johns Hopkins) and some dryness of the mouth. If you do have the operation, google Dr. Icthak Brooke, a surgeon who is practicing after having his laryngectomy. Good luck and keep us posted, God bless Denis0 -
updateVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
still waiting....great news though...they didnt find cancer in my lymph nodes! The doctor is going to take another biopsy of the tumour, to confirm what type it may be...I will keep you all posted.0 -
updateVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
still waiting....great news though...they didnt find cancer in my lymph nodes! The doctor is going to take another biopsy of the tumour, to confirm what type it may be...I will keep you all posted.0 -
updateVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
still waiting....great news though...they didnt find cancer in my lymph nodes! The doctor is going to take another biopsy of the tumour, to confirm what type it may be...I will keep you all posted.0 -
updateVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
still waiting....great news though...they didnt find cancer in my lymph nodes! The doctor is going to take another biopsy of the tumour, to confirm what type it may be...I will keep you all posted.0 -
LatestVancouverGirl said:last appointment
there seems to be some debate on what type of cancer I have and since the stakes are high, that my voice box will be removed, the doctors want to make sure they know the exact cancer I have, it appears the mucoepidermoid is what it is, but they want to make sure. At this time its a waiting game, and I will keep you posted, for now though, I am going to try to spend as much quality time with my husband and kids. thanks for all your love and support
Well I do have Mucoepidermoid of the Larynx, third biopsy confirmed it. There seems to not be much consensus on what type of treatment is successful because of the limited studies on this type of cancer. They are wanting to spare my voice box, so they are thinking to go with Rads first and maybe adding chemo...and seeing what happens.....I am so confused on what to do and scared. Does anyone here or know of anyone that opted for rads, and or added chemo and it was successful, they say I have a high grade of MEC.0 -
Mucoepidermoid cancerVancouverGirl said:Latest
Well I do have Mucoepidermoid of the Larynx, third biopsy confirmed it. There seems to not be much consensus on what type of treatment is successful because of the limited studies on this type of cancer. They are wanting to spare my voice box, so they are thinking to go with Rads first and maybe adding chemo...and seeing what happens.....I am so confused on what to do and scared. Does anyone here or know of anyone that opted for rads, and or added chemo and it was successful, they say I have a high grade of MEC.
I was also diagnosed with MEC (high grade), but mine was of the left tonsil. Be sure you get second and third opinions. Don't be bashful - it is YOUR life. It is frustrating that so little data is available regarding MEC.
As ekdennie stated, the most common treatment is surgery followed by chemo/radiation. Talk to ENTs, medical oncologists and radiation oncologists. Get second opinions from each medical speciality. Since so little data is available, YOU have to be in charge and gather information.
In my case the initial treatment plan was simply a diagnostic tonsillectomy followed by chemo/radiation. After pursuing second and third opinions, the treatment became a radical tonsillectomy and a partial neck dissection, followed by chemo/radiation. I have since learned that if I had followed the recommended initial treatment plan, my chances of surviving 5 years would have been essentially zero.
I have made it through the surgeries and started chemo/raidation last week. My doctors feel
that I have about an 80% chance of making it through the five years.
Be good to yourself and gather as much information as you can find. The more you know the
better you will feel about the final plan. Ask every question that comes to your mind. There are not any dumb questions!
Best wishes and be well,
LTRII0
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