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'Muco-epidermoid carcinoma'

summer73
Posts: 2
Joined: Sep 2013

I carried a tongue cyst for about 18 months after being told by doctors as a infectedd salivary gland which when finally removed turned out to be very slow growing 'Muco-epidermoid carcinoma - low grade'.

The histopathology report states one of the peripheral margin is close, 0.1 cm clear. The MRI that was done after 7 weeks of surgery finds no evidence of any residual tumor (not suspecting anything negative, the intial surgery just shaved off the tumor from the tongue surface, so the MRI is not able to locate the area of surgery as there were no stiches so no scarring). 

The surgeon gave me 2 options, either go for a safe wider excision (1.5 cm by 1 cm and about 6 mm deep) which could affect my speech a bit or 'Wait & Watch' with a clinical follow up every month and a repeat MRI after 3 months. 

 

I am skeptical about the surgery being an overkill. Kindly advise if it safe to go by the MRI being all clear, even though the margin is close or go ahead with the surgery. Any of you had a similar condition? Seeking your advise, surgery planned in a week's time.

TracyLynn72's picture
TracyLynn72
Posts: 681
Joined: May 2013

I had a stage II Mucoepidermoid tumor in my lower left jaw.  They removed it along with some teeth and a section of my jawbone.  It did not produce clear path results.  They went right back in and took more of my jawbone, including my left hinge, and the final path was clean.  No nodes involved as they removed 21.  I had the all clear and no cancer left in me.  The worry was microscopic cells as the first report was not clear.  They suggested 30 rads and I did it.  Is your doctor leaning more towards the surgery?  Or the waiting?  Knowing how mine was, I would personally do the surgery to make sure the margins were "enough" and clear.  I had two back to back and the swelling was tough, but other than that...I had very minimal pain.  My speech is definitely different now, but I'm missing teeth and jaw, so I knew mine would be :)  I see your point, too, about waiting and seeing.  That's a tough call.  I'm just a chicken and would be afraid by waiting that it could be worse the next time or get into my lymph nodes.  My nodes were clear this time.  If the surgeon seems the waiting and watching is a safe bet, then I'd understand you going that route.  How do YOU feel about it? 

longtermsurvivor's picture
longtermsurvivor
Posts: 1792
Joined: Mar 2010

I understand your dilemma.  In general, low grade MEC has an excellent prognosis with surgical removal only.  However, you had a margin of only 1mm, and that is very close indeed.  I can understand the suggestion that you have  a reexcision for this reason only.  OTOH, since these tumors tend to be locally recurring, not popping up as distant mets, the alternative is attractive.  Here's a typical discussion:

 

http://oralcancerfoundation.org/facts/rare/mc/

 

But you likely already knew that.  Were I you, I wouldn't panic.  This decision can wait a few more weeks.  What you might do, however, is to get your  pathology slides and oher studies,  and scoot on  down to your nearest major cancer  center and see what they recommend.  The very fact you are here says you've seen and heard things you are not comfortable with, and you need to be comfortable with your decisions.

 

Pat

denistd's picture
denistd
Posts: 494
Joined: Apr 2009

Pat, I want to go on the record extolling how precious you are to this forum, everybody here is gem but you sir can tame the wildest thoughts we have. We should all be thankful for your expertise and compassionate expression of that expertise, I am sorry about the circumstances that brought you here but you have single handedly pulled my sorry butt out of the fire on many occassions. Thanks friend.

phrannie51's picture
phrannie51
Posts: 3690
Joined: Mar 2012

Pat you ARE invaluable to this forum.   You are the one who can answer the medical questions with knowledge and compassion....what would we do without you.

p

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I so agree with Denistd and Phrannie51 !!! I think the same thing every time I read your post LTS !! You are such a blessing to this forum !! Thank you for always being here for us !!

summer73
Posts: 2
Joined: Sep 2013

Thanks a lot for the advise, If I miss this surgery date then it may become difficult to get one in the near future. I am preparing myself to go ahead and do it, just to be safe for the future.

Any other views???

Thanks

debbiejeanne's picture
debbiejeanne
Posts: 2393
Joined: Jan 2010

summer, i just want to say that i'll b praying for you to get all clear margins.  i hope your recovery will b as easy as possible.  keep us posted.

dj

longtermsurvivor's picture
longtermsurvivor
Posts: 1792
Joined: Mar 2010

To be honest wtih you, personally I would do the second surgery.  I expect you will recover just fine from it, without speech disability.  I say that because there are many of us who have very  significant tongue surgery and our speech and swallowing eventually return to completely normal.  If you get a recurrance, OTOH, there will be an even bigger surgery.  That's kind of how I see this situation, anyway, give up something now to save a bigger eventual problem.  If you've decided this way, go for it and don't look back. 

 

best to you

 

Pat

halfwaythere
Posts: 4
Joined: Oct 2013

Hi!

I am sorry that you're here with this question, but glad that you may find these comments helpful.

I am a 2x mucoepidermoid carcinoma (parotid gland) survivor and I think surgery is a good option. One of the most important factors is that you trust your doctor/team of doctors. Trust will be imperative as you continue your journey. 

 

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