Low Grade Mucoepidermoid Carcinoma

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jas_pf
jas_pf Member Posts: 12

Hi, 

I've recently been diagnosed with a low grade mucoepidermoid carcinoma on my hard palate. I had surgery to remove the tumour last week and i have just been discharged. They also use temporalis flap to cover the whole of the hard palate. Im on a soft diet atm and have lost 4kg in a week! Stiches and clips have been removed and my left face has swollen down a lot. my nose is very congested all the time and i havent had a proper sleep since the surgery plus im sleeping in an upright position so i can breath easier. Basically, everything has been moving so fast and i havent really sat down and read about all these. So, i would just like to read and learn from people with similar prognosis and what are the difficulties ahead and how to tackle them. Im more than willing to share more info if requested.

 

Regards,

Jason

«1

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    hi, jason, welcome to the

    hi, jason, welcome to the only club where we hate to see new members.  my cancer was different so can't advise but wanted to say I'm sorry you're in this situation and  I just wanted to welcome you.  i'm sure others will chime in and give you some info.  again welcome to our family.

    God bless you,

    dj

  • jas_pf
    jas_pf Member Posts: 12
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    hi, jason, welcome to the

    hi, jason, welcome to the only club where we hate to see new members.  my cancer was different so can't advise but wanted to say I'm sorry you're in this situation and  I just wanted to welcome you.  i'm sure others will chime in and give you some info.  again welcome to our family.

    God bless you,

    dj

    Thanks dj, much appreciated!

    Thanks dj, much appreciated! :)

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Jason....welcome to the club

    nobody wants to join.  I had SCC, not MCC so can't be of much help in the "similar prognosis and difficulties" except it seems when they start working on our heads we have many similarities in problems. 

    I'm sure there is someone here who has been where you are.

    Sleeping upright seems to be part of the recovery for many of us.....but so far I've heard that surgery is usually the easiest part (the part where healing happens the fastest).

    p

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    Search archived articles

    Search by keyword box at top of topic page, you will be able to get specific info on your cancer.  I remember that we have had others with this diagnosis but some are not active on the site anymore.  Sinus problems have been constant for me.  Check with your medical team and find out if you can use nasal rinse.  I add Alkalol (over the counter) to my saline solution, it has been very helpful with sinus congestion.  If you will be having radiation and or chemo I suggest that you read the Superthread at the top of the topic page.  Tons of information for treatment and post.  Stay in touch, we are here to help you get through this.

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the HNC group

    Sorry you need to be here but you found the best group for support and answers as well. I would sugest reading the "Superthread [read only] at the top of the form page, it will answer many questions and explain some terms as well. I know there are some still here with MEC. Mine was like DJ, cancer of the larynx SSC Stage3 T3,N0,M0. But before surgery they thought it was T4,N2,M0 so it can change once they are in. They did a neck dissesion and removed 86 glands level 2~5, so I understand what you went through. I was numb from ear to ear and my right side got the feeling back. I will not get the feeling back on the left side, from chin to ear but it's not bad. They did surgery and removed my larnyx [voice box] so I berath through my neck but I can talk. They put in a prostheses [TEP] so I can talk, just sound like I have a cold, hourse. I did not have radation or chemo. You can go to the top and search old threads and find some others, some are still here and some have moved on. Here is a link I got from the search:  

             http://csn.cancer.org/search/node/Mucoepidermoid Carcinoma Palate Low Grade

    When you have questions just ask and someone will try to help.

    wmc  10/2013

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    Options
    wmc said:

    Welcome to the HNC group

    Sorry you need to be here but you found the best group for support and answers as well. I would sugest reading the "Superthread [read only] at the top of the form page, it will answer many questions and explain some terms as well. I know there are some still here with MEC. Mine was like DJ, cancer of the larynx SSC Stage3 T3,N0,M0. But before surgery they thought it was T4,N2,M0 so it can change once they are in. They did a neck dissesion and removed 86 glands level 2~5, so I understand what you went through. I was numb from ear to ear and my right side got the feeling back. I will not get the feeling back on the left side, from chin to ear but it's not bad. They did surgery and removed my larnyx [voice box] so I berath through my neck but I can talk. They put in a prostheses [TEP] so I can talk, just sound like I have a cold, hourse. I did not have radation or chemo. You can go to the top and search old threads and find some others, some are still here and some have moved on. Here is a link I got from the search:  

             http://csn.cancer.org/search/node/Mucoepidermoid Carcinoma Palate Low Grade

    When you have questions just ask and someone will try to help.

    wmc  10/2013

    MEC

    Hi Jas,

     

    Yes, the cancer you had is a fairly rare one.  I was diagnosed with base of tongue Mucoepidermoid Carcinoma.  Had a 2.5 X 3.5 cm tumor down my throat.  My surgeon told me that he couldn't even find a similar case like mine so he treated it like most low grade MEC cases.  Remove the tumor and any other places it might have spread to and then radiate.  Our kind of cancer doesn't respond to chemo, so thank your lucky stars for that.

     

    Most patients who have MEC have it where you had yours.  Like what was posted up top, so a search with MEC as the key words and you'll find plenty here througout the years.  I don't know if I was lucky or not to have it on my tongue.  It hurt like all get out when he took part of my tongue out.  Lucky for me it was also low grade with clear margins.  They called it stage 3 because it had spread to my right neck lymph nodes so I needed a radical neck dissection.  My guess is they caught yours early and you won't need that surgery.

     

    The flap will work if all goes well, or they can make a prosthtetic.  See what your doctor says.  Did you already have your teeth checked?  Normally, they send you to an Oral Surgeon to remove any teeth that are not perfect.  That is done because of the radiation.  It's better to heal before they radiate because your jaw will take longer to heal later.  Depending on the pathology of your removed cancer, you may not even need radiation.  I hope not.  Let me know what they say about further treatment options, okay?

     

    Anyway, welcome here and you landed in the right forum for your cancer.  The information here and the people are so awesome.  I receieve a lot of support from everyone here and for that I am grateful.

     

    BTW, I am two years out of treatment.  You can check my profile for more info.

     

    Tom 

  • gurusank
    gurusank Member Posts: 13
    Options
    Low Grade MEC

    Hi Jason,

    Sorry you find this place. 

    My wife was diagnosied with low grade MEC at right Maxillary hard palate Jan 2014. She undergone surgery Feb 14 and in the road of recovery.

    I did/doing lot of research on MEC and got to share some point on this.

    Lowgrade MEC has good prgnosis and rate of suvival is very good. MEC LG is an indolent one and it wont spread so fastly and aggressively.

    If you got clear margins then u can consider its cured.

    Post sugery ur body will have to accept the "new" elements in to it, so couple of difficulties whichevr u are facing will be usual.

    My wife has running nose at right nosil, swelling and difficulties in opening mouth more than 20 mm, things like that.

    But good part is tumor is gone and she will come to normal soon. So i wish u speedy recovery and NED on the way.

    Please feel free to message me for any details. Happy to help u.

    Thanks,

    Guru

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    welcome

    Jason,

    Welcome to the club, sorry for the reason.

    Good luck with your battle.

    Matt

  • jas_pf
    jas_pf Member Posts: 12
    Options

    Jason....welcome to the club

    nobody wants to join.  I had SCC, not MCC so can't be of much help in the "similar prognosis and difficulties" except it seems when they start working on our heads we have many similarities in problems. 

    I'm sure there is someone here who has been where you are.

    Sleeping upright seems to be part of the recovery for many of us.....but so far I've heard that surgery is usually the easiest part (the part where healing happens the fastest).

    p

    Hi Phrannie51, thanks for the

    Hi Phrannie51, thanks for the support. Yea, since i have been discharged, ive been sleeping upright and my nose have

    been heavily congested. Tried saline drops and antihistamine but no help!

  • jas_pf
    jas_pf Member Posts: 12
    Options
    KTeacher said:

    Search archived articles

    Search by keyword box at top of topic page, you will be able to get specific info on your cancer.  I remember that we have had others with this diagnosis but some are not active on the site anymore.  Sinus problems have been constant for me.  Check with your medical team and find out if you can use nasal rinse.  I add Alkalol (over the counter) to my saline solution, it has been very helpful with sinus congestion.  If you will be having radiation and or chemo I suggest that you read the Superthread at the top of the topic page.  Tons of information for treatment and post.  Stay in touch, we are here to help you get through this.

    Hi Kteacher, yea my nose are

    Hi Kteacher, yea my nose are both constantly heavily congested. Ive tried saline drops, antihistamine and blowing my nose 100times a day but the congestion always come back after a while. Makes it hard to sleep at night.

  • jas_pf
    jas_pf Member Posts: 12
    Options
    wmc said:

    Welcome to the HNC group

    Sorry you need to be here but you found the best group for support and answers as well. I would sugest reading the "Superthread [read only] at the top of the form page, it will answer many questions and explain some terms as well. I know there are some still here with MEC. Mine was like DJ, cancer of the larynx SSC Stage3 T3,N0,M0. But before surgery they thought it was T4,N2,M0 so it can change once they are in. They did a neck dissesion and removed 86 glands level 2~5, so I understand what you went through. I was numb from ear to ear and my right side got the feeling back. I will not get the feeling back on the left side, from chin to ear but it's not bad. They did surgery and removed my larnyx [voice box] so I berath through my neck but I can talk. They put in a prostheses [TEP] so I can talk, just sound like I have a cold, hourse. I did not have radation or chemo. You can go to the top and search old threads and find some others, some are still here and some have moved on. Here is a link I got from the search:  

             http://csn.cancer.org/search/node/Mucoepidermoid Carcinoma Palate Low Grade

    When you have questions just ask and someone will try to help.

    wmc  10/2013

    Hi wnc, thabnks for the help

    Hi wnc, thabnks for the help and support, really appreciate it!

  • jas_pf
    jas_pf Member Posts: 12
    Options

    MEC

    Hi Jas,

     

    Yes, the cancer you had is a fairly rare one.  I was diagnosed with base of tongue Mucoepidermoid Carcinoma.  Had a 2.5 X 3.5 cm tumor down my throat.  My surgeon told me that he couldn't even find a similar case like mine so he treated it like most low grade MEC cases.  Remove the tumor and any other places it might have spread to and then radiate.  Our kind of cancer doesn't respond to chemo, so thank your lucky stars for that.

     

    Most patients who have MEC have it where you had yours.  Like what was posted up top, so a search with MEC as the key words and you'll find plenty here througout the years.  I don't know if I was lucky or not to have it on my tongue.  It hurt like all get out when he took part of my tongue out.  Lucky for me it was also low grade with clear margins.  They called it stage 3 because it had spread to my right neck lymph nodes so I needed a radical neck dissection.  My guess is they caught yours early and you won't need that surgery.

     

    The flap will work if all goes well, or they can make a prosthtetic.  See what your doctor says.  Did you already have your teeth checked?  Normally, they send you to an Oral Surgeon to remove any teeth that are not perfect.  That is done because of the radiation.  It's better to heal before they radiate because your jaw will take longer to heal later.  Depending on the pathology of your removed cancer, you may not even need radiation.  I hope not.  Let me know what they say about further treatment options, okay?

     

    Anyway, welcome here and you landed in the right forum for your cancer.  The information here and the people are so awesome.  I receieve a lot of support from everyone here and for that I am grateful.

     

    BTW, I am two years out of treatment.  You can check my profile for more info.

     

    Tom 

    Hi  tommyodavey, thanks for

    Hi  tommyodavey, thanks for the insight. from what i was told the cancer didnt spread to the bone but was pressing hard on it. So i think they had to remove part of it. Im still not sure abour the clear margin part, ill have to ask him tomorroW. i also had 4 teeths from my upper jaw removed, not sure if it has to do with the flap or the tumour. But the flap, i guess is still swollen so it makes it harder to eat. I have been living on soft and liquid food and have lost 5kg since the surgery, 25.6.2014. But thanks for the help, really appreciate it!

  • jas_pf
    jas_pf Member Posts: 12
    Options
    gurusank said:

    Low Grade MEC

    Hi Jason,

    Sorry you find this place. 

    My wife was diagnosied with low grade MEC at right Maxillary hard palate Jan 2014. She undergone surgery Feb 14 and in the road of recovery.

    I did/doing lot of research on MEC and got to share some point on this.

    Lowgrade MEC has good prgnosis and rate of suvival is very good. MEC LG is an indolent one and it wont spread so fastly and aggressively.

    If you got clear margins then u can consider its cured.

    Post sugery ur body will have to accept the "new" elements in to it, so couple of difficulties whichevr u are facing will be usual.

    My wife has running nose at right nosil, swelling and difficulties in opening mouth more than 20 mm, things like that.

    But good part is tumor is gone and she will come to normal soon. So i wish u speedy recovery and NED on the way.

    Please feel free to message me for any details. Happy to help u.

    Thanks,

    Guru

    Hi gurusank, thanks for the

    Hi gurusank, thanks for the input. Im sorry to hear about your wife. Im not quite clear regarding the clear margins, ill have to ask tonorrow when i see hiM. has your wife suffered from heavy congestion? Eating wise, im on liquid/soft food, cos i Can't chew yet because of the flap they put in to cover my palate. And yea, i guess all these new stuffs need adjustong, dont know how long it takes!

     

    regards

    jason

  • jas_pf
    jas_pf Member Posts: 12
    Options
    CivilMatt said:

    welcome

    Jason,

    Welcome to the club, sorry for the reason.

    Good luck with your battle.

    Matt

    hi civilmatt, thanks for the

    hi civilmatt, thanks for the encouragement and support, very much appreciated!

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Options
    jas_pf said:

    hi civilmatt, thanks for the

    hi civilmatt, thanks for the encouragement and support, very much appreciated!

    BOT MEC

    I was diagnosed with MEC, grade 3+ at the base of my tongue, left side in 2009.  Mine was also rare at that time, so the decision was made to treat it the same as SCC in that location.  I did chemo + rads--no surgery.  The treatments worked very well and I am NED for 5+ years now.  I lost a lot of wieght during the treatments and until I could eat orally again.  Don't worry about the weight loss right now--try to get the nutrients your body needs to help with your recovery, and stay hydrated.  This is a long-haul deal, so stay focused on one step at a time--the step you are at in any given time.  If you get each step right along the way, the future steps will be easier to cope with.

    mike

     

  • hwt
    hwt Member Posts: 2,328 Member
    Options
    Mikemetz said:

    BOT MEC

    I was diagnosed with MEC, grade 3+ at the base of my tongue, left side in 2009.  Mine was also rare at that time, so the decision was made to treat it the same as SCC in that location.  I did chemo + rads--no surgery.  The treatments worked very well and I am NED for 5+ years now.  I lost a lot of wieght during the treatments and until I could eat orally again.  Don't worry about the weight loss right now--try to get the nutrients your body needs to help with your recovery, and stay hydrated.  This is a long-haul deal, so stay focused on one step at a time--the step you are at in any given time.  If you get each step right along the way, the future steps will be easier to cope with.

    mike

     

    Jason

    Mine was SCC to lower jaw so can't offer much. Ask you doctor if the perscription nose spay "Ipratropium Bromide" nasal solution by Bausch & Lomb might be an option for you. Hope so.

    Good Luck,

    Candi

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Options
    MEC here too!

    I am one year cancer free after having 2 surgeries to remove a 4cm, stage 2 MEC of the lower left mandible.  They removed 1/4 of my jaw and teeth and I have a titanium plate and flap in it's place now.  It took two surgeries and 30 rads to get clear margins, but here I am a year later with no cancer.  I wish you all of the best....it's a tough surgery and treatment, but it's absolutely possible.  My tumor had broken through my jaw and so I'm learning to eat, talk and even yawn with only one hinge.  I'm not exactly like I once was, but I'm HERE and well.  I'm sorry you had to find this group, but they truly are the BEST people ever :) 

     

     

    P.S.  I still sleep propped up due to my face feeling a little "heavy" and the sinus congestion. 

  • jas_pf
    jas_pf Member Posts: 12
    Options
    Mikemetz said:

    BOT MEC

    I was diagnosed with MEC, grade 3+ at the base of my tongue, left side in 2009.  Mine was also rare at that time, so the decision was made to treat it the same as SCC in that location.  I did chemo + rads--no surgery.  The treatments worked very well and I am NED for 5+ years now.  I lost a lot of wieght during the treatments and until I could eat orally again.  Don't worry about the weight loss right now--try to get the nutrients your body needs to help with your recovery, and stay hydrated.  This is a long-haul deal, so stay focused on one step at a time--the step you are at in any given time.  If you get each step right along the way, the future steps will be easier to cope with.

    mike

     

    Hi Mike, thanks for the

    Hi Mike, thanks for the input. From what i have been told, i would not require any additional therapy other than surgery but that is not confirmed because the pathological report is not out yet. So fingers crossed! Ive lost about 5kg since the surgery, June 25th. But past few days i managed softer foods rather than just liquid food, so hopefully that would help and i am also on the feeding drinks (fortisip). You are right especially since everything has been developing so rapidly. Thanks for the encouragement!

  • jas_pf
    jas_pf Member Posts: 12
    Options
    hwt said:

    Jason

    Mine was SCC to lower jaw so can't offer much. Ask you doctor if the perscription nose spay "Ipratropium Bromide" nasal solution by Bausch & Lomb might be an option for you. Hope so.

    Good Luck,

    Candi

    Hi Candi, thanks for the

    Hi Candi, thanks for the suggestion! I shall bring it up next time i see the doctor. but i was also thinking about the NEILMED SINUS RINSE. don't know if the doctor will prescribe me any of these cos 2 days ago, my nose bleed abundantly all of a sudden. It was not a regular nose bleed, blood was pouring down like tap water, scared the **** out of me. It could be due to the excessive nose blowing that might have damaged one of the blood vessels, at least thats what im hoping it was. So far ive only been given a Naseptin Nasal Cream.

  • jas_pf
    jas_pf Member Posts: 12
    Options

    MEC here too!

    I am one year cancer free after having 2 surgeries to remove a 4cm, stage 2 MEC of the lower left mandible.  They removed 1/4 of my jaw and teeth and I have a titanium plate and flap in it's place now.  It took two surgeries and 30 rads to get clear margins, but here I am a year later with no cancer.  I wish you all of the best....it's a tough surgery and treatment, but it's absolutely possible.  My tumor had broken through my jaw and so I'm learning to eat, talk and even yawn with only one hinge.  I'm not exactly like I once was, but I'm HERE and well.  I'm sorry you had to find this group, but they truly are the BEST people ever :) 

     

     

    P.S.  I still sleep propped up due to my face feeling a little "heavy" and the sinus congestion. 

    Hi tracylynn72, thanks for

    Hi tracylynn72, thanks for sharing your story and im glad to hear that youve been cancer free for a year, shows that nothing is impossible. I only found out about the MEC 2 weeks ago and had surgery on June 25th. everything has been developing so fast, dont know if i should be thankful cos it didnt allow me to look more into it and figure out an action plan. But right now im still waiting for the pathological report to see what's the next step. But prior to surgery, i was told i would not require any radiation or chemo, so hopefully that is still the case! i had 4 teeth removed, part of the hard palate and they used temporalisis flap to cover the palate. So my left cheek/face/jaw still swollen and stiff and painful And the flap is still swollen as well. Regarding the sinus congestion, i have been suggested to use NEILMED SINUS RELIEF. You should look into it, might be helpfiul to you.