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MEC Time Frame

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Hi All,

I haven't posted a thread here in probably a year because everything has been going relatively well since my treatment.  Just had my 3rd PET scan last week but my Dr. didn't set up an appt. for the results.  If all is well they will probably mail me the results.  

Being only 16 months out of radiation treatment I am still seeing my H & N surgeon 3-4 times per year.  This last visit three weeks ago (when he ordered the PET) I asked how many years I will have to see him this many times.  His response was not what I expected.  Instead of the normal 5 years that most other cancers have, my Mucoepidermoid Carcinoma will continue on for 15 years!  He said because of the slow growth of this type of cancer, that is what is recommended.  That surprised me because the survival rate is about 90% when caught early and with clear margins like mine.  Okay, whatever.

 

My right neck is still a little numb from the neck dissection but the scar is almost completely hidden in fold of my neck.  I notice the crooked smile and lack of muscle on my right neck but no one else does.  Still taking Gabapentin for nerve pain down my shoulder but it lessens every day.  On the whole, I'm doing quite well.  And so far I have not lost any teeth.  I know it's still early but I want to keep my chompers as long as possible.  Doing the flouride every night like a good patient.

 

The main reason I wanted to post was to put the keywords of Mucoepidermoid Carcinoma in here in case another person joins our group and does a word search.  I feel a little bad because I noticed a member posted several months ago who had exactly the same cancer and her tumor was BOT like mine.  It is a very rare cancer especially on the BOT.  I didn't have a chance to respond because I hadn't logged in for months.  So there, now the words are in this post just in case.

 

Thank You all once more for your encouragement and friendship you showed me in my darkest hours.

 

Tommy

TracyLynn72's picture
TracyLynn72
Posts: 717
Joined: May 2013

for posting!  I had MEC also.  Lost my entire lower left mandible as the tumor broke through my jaw bone and they had to remove all of it to get the darn thing out.  My surgeon said he would be monitoring me closely for at least 5-8 years.  I go every 3 months now and will do so for 3 years.  I also have to see my rads oncologist every 4 months.  They aren't doing scans on me unless they see/feel something that bothers them.  I had 2 scans during rads and I got clear margins after the second surgery from path. 

 

I just had my two surgeries in March, so my scars are bright pink and very visable.  I've kind of gotten to where I like them.  I think I'm proud of them and it won't bother me if they do not fade anymore (although I know they will).  I hate all that you've had to go through, but have to admit it's nice to see another MEC survivor on here :)

 

Wishing you all the best and clear scans forever! 

CivilMatt's picture
CivilMatt
Posts: 2977
Joined: May 2012

Tommy,

Nice to hear you are doing well.  I can’t figure out the follow-up appointment and scan schedule.  I am really not sure if there would be more scans and more frequent appointments if money were no object?  Surely, more importantly are the batting averages (survival rates) of the ENT and the rad and chemo oncologists, i.e. all scans and appointments needed.

Unlike your cancer my was BOT , SCC, still a bear, but more common.  I am currently 16+ months post, so I am familiar with your timeline.

Keep enjoying life,

Matt

katenorwood
Posts: 1831
Joined: May 2012

I understand your confusion on scans.  My dx is different....but like yours rare, and slow growing.  Mine will be followed according to my drs. (recommended) the rest of my life.  But saying this, and knowing we are each unique in our lives....I think you and anyone else faced with a bit longer tracking will benefit knowing if a re-occurrance happens it will be found early on. 

You are a true inspiration to post for others facing this dx, and showing them there is life after this dx.  Thank you Tommy ! 

Also I wanted to say more on scans.....post dx's and tx's.  If you find yourself needing to be tracked longer.....ask the onc's which is the least damaging to our bodies.  I have been reading alot on this, and have been advised to request the least invasive to my body.  Because I need to be tracked for so long.  Just a thought.

Anyway.....thanks again Tommy.  And so glad you're doing so well !  Hugs sent !  Katie

meaganb's picture
meaganb
Posts: 228
Joined: May 2012

I have the same diagnosis as Katie, ACC. My ENT said he would like to follow  me for the next 20 years. It is certainly disheartening. I went from seeing my GP annually to having at least an appt every month between my Onc & ENT.

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Wow!  Thanks everyone for posting back.  It always feels good to share C stories with those who understand completely.  

 

TracyLynn, what you went through was much more than I did and also more commom.  MEC is a salivary gland cancer so it seems strange that it would be in the mandible or hard palate.  I suppose it gets there through the Parotid Salivary Gland and spreads.  My surgeon could not find a reference for treatment with mine being a BOT tumor.  He said the tongue is full of minor salivary glands so that is the only explanation.  My fear going into the OR was how much of my tongue he was going to take.  It ended up being a large chunk but being down my throat no one can see the scar tissue.  If I stick my tongue out, it's crooked.  And it's not as long as before.  I know that sounds funny but it is harder to use my tongue after eating to work on my teeth.  The tissue probably pulled back to fill in the large hole.  I was very pleased when I woke up that I could talk.  Not all that good, but good enough.

 

I hope you're healing well and look almost the same as before.  And like you, I wear my scar with pride.  I haven't won the war but I sure won the battle.

 

Thanks again everyone,

 

Tom

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

I had MEC BOT (left side) in 2009.  I was told that 5 years was the "cure time" for my cancer, and I'm happy to report that I've had clean scans since summer of 2009.  However, because my tumor had involved the jaw bone, I am having some issues with ORN and can expect a jaw resecting in the next 6-24 months.  My recent symptoms are leaning towards an earlier procedure timeline.  When the radiation ocno told me I had MEC cells, he said that it was rare, and admitted that they had no standard treatment protocol for it.  So, they proceeded as if it was SCC (chemo + rads), and the results have been very positive, except for the ORN side effects.

Mike

 

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