Mucoepidermoid BOT

jdsaffle
jdsaffle Member Posts: 4
in Head and Neck Cancer #1

Since this a rare cancer I will post my story to add to the others.

BTW, thanx to tommyodavey who guided me to this site.

 

In 2007 a small lump appeared in my left neck. My ENT was not concerned. Now, in October 2013, it had began to enlarge but still no pain. My ENT ordered CT and did FNA. The CT showed a mass in the right side base of tongue. The FNA of the neck mass was diaagnosed as Pleomorphic Adenoma, which is itself very rare.

 

I had the neck tumor removed by the ENT and at the same time had panendoscopy of the tongue base for biopsy. Pathology of the neck mass this time was mucoepidermoid carcinoma. The tongue base biopsy was inconclusive.(too deep to get tissue). I then went to oncologist/radiologist who recommended slides be sent to MD Anderson, Houston. He was hoping that it was actually SCC which could be treated with chemo/radiology since the BOT tumor was still small (2cm). Meanwhile I was reading a lot and the TORS procedure looked good to me.

MDA confirmed the mucoepidermoid for both the neck mass and the BOT biopsy. This changed the treatment plan. Since MEC does not respond to Chemo, surgery was recommended. I was sent to Baylor All Saints for consultation. Well, TORS was ruled out due to the location of the tumor, 2cm embeded deep in the right side of tongue base. Open surgery was to be done in which the chin bone is divided, the tongue base is retracted, then the tumor removed. Reconstruction will involve metal plate secured with screws in the chin. Other tongue work may be needed as well.

Surgery is set for Jan 8. I am busily getting teeth checked, speech/swallow appointments, cardiolgist

 I have not used tobacco for 50+ years. I do not abuse alcohol. I am male, age 75 in general good health. However, in my late 20's I worked for Texas Instruments building Radar based weapon systems for USAF. My job entailed final checkout where the equipent had to be transmitted at full power. We knew the danger but at 25 you are invincible. This may be it.

 

The surgery sounds gruesome but I was warned it was the radiation that would do the most damage. At 75, I would prefer less radiation and accept the increased risk. IDK. (Hey, I still have no pain or symptoms, but I was toold it would not last)

Comments are appreciated ...

 

 

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome...

    Just wanted to welcome you to the family....

    Yourself, like myself and others....

    I was in perfect health, other than having cancer....

    I was Dx STGIII SSS Tonsils and a lymphnode, HPV derived, I wasn't a tobacco user, not alcohol abuser either... HPV, the new kid on the block for H&N Cancer...

    Thoughts and prayers your way...

    John

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    Skiffin16 said:

    Welcome...

    Just wanted to welcome you to the family....

    Yourself, like myself and others....

    I was in perfect health, other than having cancer....

    I was Dx STGIII SSS Tonsils and a lymphnode, HPV derived, I wasn't a tobacco user, not alcohol abuser either... HPV, the new kid on the block for H&N Cancer...

    Thoughts and prayers your way...

    John

    Sorry

    Sorry you had the need to find us but glad Tommy sent you our way. I had SCC in lower jaw. A 19 hour surgery to replace the jaw w/ fibula from my leg, followed by rads and chemo. Agree, I would take that surgery tenfold over rads. Microscopic cells recurred in tumor around my carotid artery 15 months later. I then had SBRT tx at Mayo clinic. Results last week show that tumor gone but another spot on opposite side. Plan is, more chemo and then SBRT or surgery. The SBRT was only 5 tx and virtually no side effects. Never any real pain here either, just continuous discomfort. Well, lip sores during traditional rads were painful.

    Prayers that your journey is not as difficult as you anticipate.

     

    Candi in STL

     

     

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    Welcome JD

    I have had several SCC's rather than MEC, but my treatments have engendered surgery pretty much as you are faced with, and full radiation twice.  My first cancer was BOT, so I got rads and a radical neck disection.  Neither of those treatments were that bad. 

    Many years later I had a second SCC, arising in the floor of my mouth adjacent to the tongue.  That was treated with an open procedure, jaw division, resection, and ultimate reconstruction using a vascular graft from my forearm.  14 hours of surgery with a tracheostomy, NG tube, the usual stuff.  All of this was done, of course, in a field that had already been irradiated.  This prolonged the healing phase a bit.  having said that, the surgery was worse in it's anticipation than it was in reality.  I was 8 days in the hospital, and several months recovering at home.  I remember being very weak on dismissal; I do not recount that the amount of pain I suffered was severe.

    And then I had the fortune of having a third cancer of the soft palate a year later.  This was treated by chemoradiation.  I suppose this was the most difficult treatment I went through.  It certainly lasted a long time, and has produced a few long term problems for me, like difficulty eating and some impediment of speech.  But I am now about two years out from this last treatment, and to all appearances have been cured.

    I understand your observations regarding the trade-off between cure and quality of life.  This is certainly an issue with respect to radiation dose.  Side effects and complications go up exponentially as dose increases.  At 56Gy, recoveries tend to be uneventful and complete. At 70Gy the same cannot be said.  And chronologic age is clearly a part of this equation as well.  These are tough questions, and ones that probably take a center like MDA to really address, if anyone is able to address them with anything but empiric observations.

    Welcome to the club that no one wants to join.  There are others with MEC here, although they are in a distinct minority.

     

    Pat

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #5
    MEC treatments

    I was diagnosed with MEC BOT in early 2009.  At that time the rad-onco admitted that there was no protocol for treating MEC/BOT, so they just treated it as SCC/BOT, and would hope for the best.  Well, the 'best' turned out to be really good, and I am now officaily cured of my cancer as of a few weeks ago.  My MEC ressponded well to chemo+rads and I wish you the same from your treatments.

    Botton line--there is no sure-bet treatment regimine for HNC, so do what the docs say is needed and trust that it will turn out OK.  As for your concerns about rads, that is well-founded.  My advice is to know what to look for and to respond as soon as you see/feel the symptoms.

    Best wishes.

    mike

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    welcome

    jdsaffle,

    Welcome to the H&N forum, so sorry you find yourself here.

    A lump on my neck is where I began this journey and stage IVa, bot, scc, hpv+ is where it lead.

    I had no pain or symptoms, it just was.

    With the help of your team, you will chose a plan that fits you and works.

    Good luck,

    Matt

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #7
    MEC here too!

    I had MEC in my lower, left mandible.  1/4 jaw removed and replaced with titanium plate.  Tumor removed and 30 rad treatments.  It wasn't easy, but I stand here today saying I'm cancer free 6 months!  Will be praying for you...you've found an amazing group of people here!

  • jdsaffle
    jdsaffle Member Posts: 4
    #8
    I certainly appreciate

    I certainly appreciate everyone's reply. It is somehow reassuring to know others have gone through this (some much worse than me). I will have strong support from Ida Mae, my wife of 52 years. But it is good to know I can vent here ...

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    jdsaffle said:

    I certainly appreciate

    I certainly appreciate everyone's reply. It is somehow reassuring to know others have gone through this (some much worse than me). I will have strong support from Ida Mae, my wife of 52 years. But it is good to know I can vent here ...

    welcom jdsaffle.  sorry you

    welcom jdsaffle.  sorry you need to be here but glad you found the site.  as you can see from the comments, there are several MEC SUVIVORS here.  they will be able to guide you thru your journey.  come here to ask questions, vent, talk, whatever, nothing is off-base.  we will all be cheering you on and praying for an uneventful tx.  Merry Christmas and Happy and Healthy New Year.

    God bless you,

    dj

  • jdsaffle
    jdsaffle Member Posts: 4
    #10
    longtermsurvivor said:

    Welcome JD

    I have had several SCC's rather than MEC, but my treatments have engendered surgery pretty much as you are faced with, and full radiation twice.  My first cancer was BOT, so I got rads and a radical neck disection.  Neither of those treatments were that bad. 

    Many years later I had a second SCC, arising in the floor of my mouth adjacent to the tongue.  That was treated with an open procedure, jaw division, resection, and ultimate reconstruction using a vascular graft from my forearm.  14 hours of surgery with a tracheostomy, NG tube, the usual stuff.  All of this was done, of course, in a field that had already been irradiated.  This prolonged the healing phase a bit.  having said that, the surgery was worse in it's anticipation than it was in reality.  I was 8 days in the hospital, and several months recovering at home.  I remember being very weak on dismissal; I do not recount that the amount of pain I suffered was severe.

    And then I had the fortune of having a third cancer of the soft palate a year later.  This was treated by chemoradiation.  I suppose this was the most difficult treatment I went through.  It certainly lasted a long time, and has produced a few long term problems for me, like difficulty eating and some impediment of speech.  But I am now about two years out from this last treatment, and to all appearances have been cured.

    I understand your observations regarding the trade-off between cure and quality of life.  This is certainly an issue with respect to radiation dose.  Side effects and complications go up exponentially as dose increases.  At 56Gy, recoveries tend to be uneventful and complete. At 70Gy the same cannot be said.  And chronologic age is clearly a part of this equation as well.  These are tough questions, and ones that probably take a center like MDA to really address, if anyone is able to address them with anything but empiric observations.

    Welcome to the club that no one wants to join.  There are others with MEC here, although they are in a distinct minority.

     

    Pat

     

    I had my BOT tumor and lymph

    I had my BOT tumor and lymph nodes removed Jan 8. Also trach and gtube. Discharged from hospital Jan 13. Clear margins. Trach comes out in two weeks. I don't fully understand the trach sice I can breathe fine now. Also, swallow good and speak well. There is still a lot of swelling and the the mucus is constant.

    Hoping for short duration/dosage of rads. Go to radiologist Jan 17.

    When will the mucus ever stop?

     

  • kingcole42005
    kingcole42005 Member Posts: 178
    #11
    Hi

    Sorry your going through this. I had high grade mucoepidermoid removed 10/10 from my submandibular salivary gland. Yours is in a different area than mine. You didn't say the grade, which really matters with this cancer. High grade very bad, low grade very good. Staging didn't really come into play at all for me I was T1N0M0. They just told me the grading is what they go by. So far so good. I had pretty extensive surgery, removed the left floor of my mouth and zapped me real good! So just had a PET/CT wednesday. If you have any questions this is the place to come. It helped when I was in treatment immensely. 

  • jdsaffle
    jdsaffle Member Posts: 4
    #12
    kingcole42005 said:

    Hi

    Sorry your going through this. I had high grade mucoepidermoid removed 10/10 from my submandibular salivary gland. Yours is in a different area than mine. You didn't say the grade, which really matters with this cancer. High grade very bad, low grade very good. Staging didn't really come into play at all for me I was T1N0M0. They just told me the grading is what they go by. So far so good. I had pretty extensive surgery, removed the left floor of my mouth and zapped me real good! So just had a PET/CT wednesday. If you have any questions this is the place to come. It helped when I was in treatment immensely. 

    The primary tumor was base of

    The primary tumor was base of tongue, 2cm. But metastizised to left neck where 6 nodes removed. Since it matastized it was caled stage 4 even though clear margins were received. Does this aumatically mean about only 40 -50% survival chance? It was not likedistant matastasis like to the liver ...

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #13
    jdsaffle said:

    The primary tumor was base of

    The primary tumor was base of tongue, 2cm. But metastizised to left neck where 6 nodes removed. Since it matastized it was caled stage 4 even though clear margins were received. Does this aumatically mean about only 40 -50% survival chance? It was not likedistant matastasis like to the liver ...

    I could be wrong here

    But I've not heard a survival rate for MEC (v. SCC).  I think it depends more on HPV, 80+% for HPV+ and around 55% for HPV-.  Those percentages might be different now, but that's what I was told 5 years ago when I was diagnosed.  I had MEC/HPV- (with local mets) and was treated the same as if I had SCC, and have survived to the 5-year "cure time."  Of course, your doctor will know more, so be sure to ask him/her.

    Good luck on your journey.

    Mike

     

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #14
    Mikemetz said:

    I could be wrong here

    But I've not heard a survival rate for MEC (v. SCC).  I think it depends more on HPV, 80+% for HPV+ and around 55% for HPV-.  Those percentages might be different now, but that's what I was told 5 years ago when I was diagnosed.  I had MEC/HPV- (with local mets) and was treated the same as if I had SCC, and have survived to the 5-year "cure time."  Of course, your doctor will know more, so be sure to ask him/her.

    Good luck on your journey.

    Mike

     

    Glad you made it here

    Yes, the grade is important.  Just like Kingcole said "high grade=bad, low grade=good".  Mine was a low grade tumor so the survival rate is very high.  Somewhere over 90% with clear margins, which you had.  As you have read here, MEC is one of the rare ones.  But when you have so many people here on CSN, it doesn't seem so rare anymore.

     

    Give us an update please.  Did you ask about lower dose rads?  You probably won't start those until your jaw is completely healed so enjoy the break.  Go into it with the attitude that it won't be bad at all.  Every case is different so you just might have less side effects than others did.  A positive attitude is really quite helpful during and after treatment.  This is the place where you can complain and feel sorry for yourself.  We understand what you are going through.

     

    It made my day to see your thread started here.  Keep us/me updated on your progress.

     

    Tom

  • ValeIT
    ValeIT Member Posts: 23
    #15
    Ciao

    Hello, I'm Italian (sorry for my English because I use online translator). 

    I had a low-grade MEC in the retromolar area removed in December 2012. 

    I have not received therapy but I'm controlled by doctors every four months and I did rsm in August 2013, which was ok .. no recurrence. 

    In my country I have only found 2 people with this disease and strangely all who live close to my home town in northern Italy. 

    No smoking and no alcohol consumption, dental hygiene perfect ... 

    I have used mobile phones and cordless headsets without .... 

    Radiation can be a cause. 

    This low-grade cancer usually does not cause distant metastases and local recurrences are rare. 

    In the case of locoregional recurrences were advised that the hadron therapy is more effective and has fewer side effects. 

    In Italy there is a unique specialized center in Pavia. 

    But I hope I never need to me 

    You let us know how goes. 

    I hope that what I wrote is understandable.

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