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Janicego's picture
Janicego
Posts: 5
Joined: May 2013

Hi, My name is Janice.  I was told last May 2012, I had mucoepidermoid carcinoma primary sight unknown.  Well, this May they found the primary sight, the base of my tongue.  I'm told this is a rare cancer and having it in the tongue area is almost unheard of.  I went to the tumor board last Friday to discuss my case.  According to the Dr there, they have not had much experience with this cancer. "you are our teacher"  not really what you want to hear from your onoclogist.  

My simulation appt is next friday with radiation to begin 5-10 days after that.

I'm scared not really sure what is ahead of me.  I'll keep my 3 f's close;  family, friends and faith

Thanks

Janice

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

slice of the internet.  You're lucky you happened on this site, tho.....there are so many knowledgable, supportive, and kind people here, to get you thru this bump in the road.   I had SCC, but it's sounding like your treatment will be much the same....are you getting chemo as well as rads?  We have many people here who have had BOT (squamous cell), so they'll be able to get you thru the pitfalls of radiation in that area.  Are they saying anything about surgery to remove the tumor after rads (since you didn't mention that they want to do surgery before)...

Where are you being treated.....if you don't mind me asking......I was thinking about them saying that you're the teacher, since it's so rare for MCC to be at the base of the tongue.  Longtermsurvivor is the guy in the know, and understands what the Dr.'s are saying and how they think....he'll probably chime in here.

p

Janicego's picture
Janicego
Posts: 5
Joined: May 2013

Hi

Thanks for writing back.  I'm in Michigan and going through Oakwood. I feel comfortable with Oakwood.  I have had many second opinions about the type of cancer. 

Because of the location surgery will be the last option.  Too risky will effect my voice and swollowing.

I know, when he called me the teacher  I said " well, you need to pay me and in saying that it doesn't  give me much hope"

They have not mention chemo.  I go for my simulation on Friday.  I had to have dental work done first and get cleared before i can start radiation.

Janice

 

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

last year when they found it the first time?  I'm just curious why they aren't talking about chemo for the primary....

p

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Phrannie, I could be wrong but I think the type of cancer she has is not normally treated with chemo. I think it us usyally found in tge salivary gland. I had a salivary gland cancer as well and was only treated with Rads, no chemo b/c there is no chemo that is known to be effective. There are a couple people on this board with the same type of dx. I hope they will chime in soon. Best of luck to you Janice & you have found a great place for support!

Janicego's picture
Janicego
Posts: 5
Joined: May 2013

Hi,

It was first found in a lymph node which was removed.  MCC is not normally found in lymph node so every 3 months I had a PET scan to see if anything lit up and my tongue always did.  I had 3 biopsy and a tongue resection which was horrible at that time every thing kept coming back negative.  Then a few months ago I could feel the base of my tongue was swollen so we biopsy it again and this time it was positive.  It's taken a whole year to find the primary source. 

They did mention radiation after they found it in the lymph node.  But they did not know where to radiate and did not want to radiate my whole body, so we waited until we found the primary.  It's been a long year!!!

Janice

 

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

My husband, Jim was diagnosed May 2011 with stage four BOT and two lymph. Like you he had to have dental work prior to rads. His treatment was 35 rads and 3 chemo but he couldn't do the chemo. The best advice I can give is "swallow exercises" are crucial. Jim's therapist gave him exercises but said drinking fluids and swallowing were the best. She also told us that your swallow muscles are different in that they don't come back once they lose the ability to work. Best of luck through the treatment and I will keep you in prayer.

Debbie

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

My husband is going to U of M Ann Arbor, I know it is a haul but they have a very comprehensive cancer center and deal with a lot of Head and Neck cancers. 

I would recommend Dr Carolyn Bradford as ENT, and they would set you up with Dr. Eisbruch, a pioneer in Raditaion Oncolgy of head and neck. They are all absolutely terrific.

My husband has tonsil cancer with lymph node involvement. Dr. Eisbruch and Dr. Worden (medical oncolgy) will be the 2 people that cure my husband.

Please look into this team. U of M is #14 in the country for cancer and #1 in the state. Dr Eisbruch trained at the #1 MD Anderson cancer center and is an expert in head and neck

Sandy

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

Henry Ford. 

Another great hospital. Excellent cancer center.

I would definitely look into other options because you don't want to be the teacher just the student. 

Sandy

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

Janice,

I was Dx with MEC BOT (left side) in February of 2009.  While this is rare, I am surprised that your oncologist confessed to letting you be the teacher.  My team decided to treat it the same as SCC, and I am living proof that was a good decision.  3 chemo infusions + 36 rads.  Please feel free to send me a private email if you want to ask more questions.

Mike

 

Janicego's picture
Janicego
Posts: 5
Joined: May 2013

Thank you everyone, I already feel so blessed to have found this site.

My understanding is...Mucoepidermoid Carcinoma  is normally found in the saliva glandes which would be removed with surgery.  For me it was found on the base on my tongue.  Radiation treatment is what the drs have recommended.  No talk of any chemo.  I did go to U of M with the same out come.  Also Mayo clinic.   I have to believe that I have the best doctors taking care of me.  Believe me I did not like it when he told me I was the teacher.  I don't want to be the teacher.  I want there to be alot of sucess storys out there, people who have been threw this.  I wanted the drs to tell me they had alot of experience with cases like mine.  Also the dr that said that is not my dr, he was on the cancer board.  Hopefully I never have to see him again, but I will tell my dr what he said.

Thank you everyone

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I say if you are the teacher (I know you said it was just one doc and not on your team) then use Mike Metz comment above and treat this stuff like SCC.  I'm no doctor but if he is a success story.....why not? :)  The only thing left off the tabel is chemo...what could it hurt, if it's not effective on your type cancer, then you suffer the side affects for nothing (not that it's easy to say that) but if it is or does lend a means to reach NED ...then great! Sometimes this cancer stuff does truly require a "scortched earth" approach to kick it to the curb.

 

Tim

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I just had a 4cm tumor (Mucoedipermoid Carcinoma) removed from my lower left jaw.  Well, actually they took my entire lower left jaw with it because it had grown into the bone and broken through it.  Mine was a "rare" case, too.  They had removed many MECs over their years but never one IN the bone like mine.  I told them to use me as a case study if they wanted to :)

 

I'm in NC and with Levine Cancer Institute.  Top notch all the way! 

 

I've had two major surgeries to get clear margins, but they did NOT take my salivary glands.  All nodes were clear also.  I'm right smack in the middle of rads now and no chemo.  They normally don't recommend chemo for MEC is what I was told, but rads can be quite common for even the rare MECs.  I actually have a friend who had a MEC in her NOSE!!  Crazy, but true.  She had it removed and needed no further treatment. 

 

So, while mine was considered unusual like yours is, they did a great job taking care of me and even though there were a couple of drawbacks (needing the second surgery), I'm still here and thankful for life :)

 

No one fights alone!

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

 

Just asking where are you going for treatment. Something you might want to conceder is getting a second opinion. I know in my case the first doctor I went to never seen a case of NPC cancer before, but he forgot to tell me that. So he treated me just like a normal case of sinus cancer, the rest of this story is on my About Me page. Anyway make sure you are going to one of the major Cancer Institutions like Mayo Clint or MD Anderson. Also pray about it and get as many people as you can to say a little pray for you. God bless and be with you and your little one.

 

Hondo

CivilMatt's picture
CivilMatt
Posts: 2859
Joined: May 2012

Hello Janice,

Welcome to the H&N forum, where experience is our guiding light.

I was stage Iva, scc, bot, 1-lymph node, hpv+ (surgery, rads & Erbitux) and I feel great (with limits).  You are lucky they assigned you the teacher role and not the surgeon.  Be that what it may, it sounds like they have a plan and you are satisfied.

Don’t forget to check-out the Superthread and pop back in for questions and comments whenever you want.  This is scary cancer, but the folks here really helped me to cope and to prepare and to prevent side effects and we can do the same for you.

Get ready,

Matt

tommyodavey's picture
tommyodavey
Posts: 352
Joined: Nov 2011

This is what happens when I don't check in often enough.  I came here in Oct, 2011 with the same DX.  Mucoepidermoid Carcinoma.  3-4cm tumor on the base of my tongue.  Like you, it went to my right neck lymph node.

 

My doctor said the exact same thing as yours.  What they did for me was 1st, surgery to remove the tumor.  2nd, a radical right neck dissection that found two positive lymph nodes.  He took about 40-50 of them out along with my right Parotid salivary gland.  Then he moved my left gland to more of the center of my chin and told the rad team to avoid that area.  Luckily, I still have one major salivary gland left.  3rd, 30 low dose radiation treatments.  It was a lower dose because I had surgery and nothing was left.  The tumor came out with clear margins.  He also used TORS to get it out.  He is the only doctor who can use that machine in my state so I'm very lucky.

 

I am so sorry I didn't see your post until today.  And I only found it by putting in the key words.  Yes, our cancer is a rare one, especially on the BOT.  There are small salivary glands on it so obviously it's not impossible.  Now they have several cases to study.

 

Please feel free to contact me if your treatment is not over.  My Dr. and your Dr. could possibly talk about it.

 

Tom

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I cannot believe your not having surgery? It makes no sense. I had MEC of my submandibular, the treatment is surgery, THEN radiation. I have read nothing else that states that radiation as the main treatment. I was also told the MEC does not respond to chemo. Can I ask what grade, with MEC grading is extremely in important. I had high grade, which has a pretty low survivablitly up to 5 years, but I'm doing great so far. I hope your treatment went well. There are so many great doctors out there, you should really seek a second opinion. I had Dr. Eisele at UCSF, he is now in Baltimore. 

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