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Mucoepidermoid carcinoma of the salivary glands (I write from Italy)

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Hello to you all. 

I am an Italian woman, 49 years old and I found this forum with the hope of talking to someone who had my condition.

I hope it is understandable what I write because I use online translator.

In Italy there are few people who have had this type of cancer ... maybe because rare or because Italy is a small country.

In December 2012 I did surgery to remove eighth molar included and benign cyst, but it turned out to be a low-grade mucoepidermoid carcinoma in a minor salivary gland in the retromolar area.

I'll tell you how it went:

The cyst had been present for 2 or maybe 3 years.

The dentists were convinced it was an inflammation caused by a molar tooth included .... for the sake a maxillofacial surgeon did a biopsy in July 2012 that turned out strangely negative!

But in November, during surgery to remove this cyst (diagnosis: mucocele), the definitive histological examination found instead that it was a well-differentiated mucoepidermoid carcinoma of low grade.

Second operation performed to widen margins free of tumor. (2 microleakage found in the neighboring tissue).

The surgeons have assured me that this tumor is controlled very well and hardly can cause distant metastasis.

I'll have to do periodic checks for life, but no chemotherapy or radio.

I'm still worried that this thing was there for a few years and have only examined tac dentalscan, no PET or ultrasound for now.

I wonder if you can tell me about your experiences and if after the first surgery, you have been operated several times because of local recurrence and if this has happened to you in that area relapses occurred?

How did they diagnosed?

with a visit or ultrasound examinations or tac?

thank you very much

Vale

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

I do not have any experience with your specific diagnosis.  Perhaps other members of this forum will share if they have had anything similar.  If the Italian medical protocols allow your doctors to include scans in your followups, I hope you will be able to request and receive more reassurance (possibly through a PET scan) so that you do not have to continue feeling so much anxiety.

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Thank you for your response.

I live in northern Italy, in the province of Bologna and our hospitals are in the vanguard. But doctors believe that my tumure was located and being of low malignancy should not make immediate radiotherapy and exams.

I was operated on in December and I have already had three checks, the next one will be in April. The control consists of a thorough examination of the oral cavity.

I'll have to do TAC in June.

I have not even talked to a doctor of oncology, (only maxillofacial surgeon), but I thought to do so by contacting a specialist privately paying.

I must say that our hospitals are made by teams of doctors of various specializations and certainly they have consulted with each other.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I'm from SLOVENIA Wink. My dad had base of tongue cancer with multiple lymph nodes involved, so this is not similar to your diagnosis. I joined this forum last July, because in our country there's also not much info about those types of cancer.

I hope somebody will give you answers about your particular questions.

My dad did not have surgery, only radiation (35) and 7 weeks of concurrent chemo (Cisplatin). He was misdiagnosed for a year - because they told him that his sore throat and swollen lymph node are just inflamation. But when his lump got bigger he returned to ENT and one thing leading to another.... it was the big C.

Now he is 5,5 months out of treatment and had two check-ups till now. One was only finger exam, and the other one (in January) was CT.

Don't worry much about recurrence, try to enjoy your life... Watch and observe yourself but don't waste too much precious time on worrying if this will come back. Doctors gave you good odds, so.... don't worry. But I agree that you should have CT or ultrasoung... Talk to your doctor about that...

 

I wish you luck!

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Hello Vanessa, neighbor!

Thanks also to you for comfort and I hope your dad a perfect healing! Wink

katenorwood
Posts: 1812
Joined: May 2012

Vale,

Hello there !  Yes your dx is a rare one.  Back in 2011, I was dx'd with adenoid cystic carcinoma of the right submandiblar gland.  (large saliva gland)  If I read your post correctly, you received the news that they got clean (clear) margins ?  We are similar as I was told rads, and chemo were not effective for the dx.  I believe that they should be at the very least doing a MRI or CT every six months to check for reoccurrance.  Pets are good indicators for most cancer dx's....but for some kind of unreliable.  I know there is a rare cancer foreum I will check into for you to get the proper site info.  Also....please check with www.accoi.org they have some excellant information, and can direct you to the proper resources.  They are an international site world wide.  Good luck with everything, and please keep us posted !   Katie 

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Thanks for the advice, I'm curious about the fact that animals sniff cancer ..... I knew that some dogs have these capabilities.

I have a wonderful cat maine ****.

How can take advantage of this gift?

katenorwood
Posts: 1812
Joined: May 2012

Hi again Vale,

I have read this too about pets (animals) but my meaning or (wording) was off on this one !  I meant to write P.E.T. Scans.  Sorry for the misinterpetation on this one !  But this is a good subject with the pets and knowing we are ill.  Would like to hear more if anyone has any experience with it !    Katie

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Hi Katie,

We have a Pixie Bob cat. He's definitely a momma's boy but since I've been sick and especially after the surgery when I've been hurting, he's been sending a lot of time with me. They definitely know and are intuitive.

On the other side of the coin, he's a great source of joy for me. With Mommy, it's all lovey dovey but with me it's rough and tumble and play time. I have a blast throwing his "mousie" around and playing "tag" with him. He makes me laugh and smile and it's good for my soul :)

"T"

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

These are adorable four-legged friends! I'm definitely therapeutic Wink

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

So sorry, but it is the fault of the online translator! now I get it ... thanks! Laughing

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Katie,

We have experience.. our neighbors cat likes no one but her human mom, and she will only tolerate me, because I have gel nails and they feel good, so maybe every few weeks during the summer I get to scratch her neck. Last summer, she loved Dan, spent lots of time with him. Everytime he walked in their door, she was next to him, paying attention to him. After November 2nd, when Dan had his surgery... she's ignoring him again. Doesn't want anything to do with him.

Pretty smart kitty.

Kari

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Yes, the animals are very intuitive ... your husband, how are you?, has made alternative therapies?

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Yes, my husband has two surgery's. His cancer was in his left tonsil and in his neck. So after the two surgerys in one day, a month later he did 6 chemo treatments and 30 radiation visits. He's starting now 6 weeks out of treatments to start to see mostly better days. His mouth still bothers him considerably, but over all, I am not complaining. He's starting to look like himself again :)

Hope you are doing well!

Kari

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

hello vale, 

i will be giving you some information.  i hope it helps.  i am not on very often anymore, so it may take me a while to respond if you have any questions.

 

i was diagnosed with Mucoepidermoid Carcinoma(MEC) of the hard palate in june 2010 at the age of 31.  i had surgery in august 2010.  my tumor was about the size of a ping pong ball, tissue the size of a golf ball with clean margins was removed from my hard palate and sinuses.  my tumor had been growing for five 1/2 years at the time of my biopsy.  i had been told that it was a torus (boney growth).  when i had my biopsy it came back low grade, but because of it's size and where it was, i was sent to an ENT to remove it.  he did an amazing job.  i had clean margins.  if the tumor had remained low grade that would have been it for my treatment.  i would have come in to see my dr and for him to check for regrowth.  however, mine turned out to be intermediate grade.  because of that i had 30 rounds of radiation and I have annual PET scans.

some information about MEC:

it can occur in anyone at any age.  there are no known risk factors for it.

low grade with clean margins has a great prognosis.

intermediate and high grade depend more on which type of cell within the tumor has changed and how far spread the tumor is.  in my case i have a good prognosis.

MEC's tend to come back to the same area that they had previously been if they come back at all.  when you have clean margins, they rarely come back.  they have distant mestastisis even less often.

MEC is a rare cancer.  i have read that 2-3 people out of 100,000 have it.

i have posted about MEC in the past and I am sure that I have posted a lot more information.

It is common to not have a PET scan when the tumor was well differentiated and low grade.  it is hard to not worry about it coming back, but you really have the best diagnosis you could for this type of tumor!  plus, you now have people who are actively on the look out for regrowth.  

I have to go take care of my 4 kids (ages 7,5,3,1  the youngest was a post treatment blessing and the second youngest was an infant during treatment).

Huge Hugs...we all need a hug sometimes!

e

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Hello Dennie!

Congratulations on your beautiful and large family.

Thanks for the reply.

I did not understand well if your MEC was initially low-grade and later became intermediate grade or was initially diagnosed grade wrong?

a big hug to you too!

Ciao

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

Vale, 

the main thing to understand about MEC's is that they are composed of a variety of cells and mixture.  Only some of those cells have gone cancerous.  In my case, the section that they did my biopsy was low grade.  once the final fully removed tumor was examined under microscope they determined that although most of it was low grade, there were potions of it that we intermediate grade.  a biopsy just gives you a (for lack of a better term) "best guess" as to how severe the whole tumor could be.  it isn't until you have had a final pathology report that you know what stage and grade your tumor actually is.   

when low grade the general rule is surgery alone.  only rarely will they recommend radiation as well, and then only if the margins are not clear or if the tumor is not well-differentiated.  this is because the benefits do not always outweigh the risks.

when intermediate or high grade, surgery is the first choice when possible, followed by radiation, if possible.  then chemo.  chemo is not always very effective, but it can help shrink a tumor enough for surgery...depending on the location of the tumor and if there is spread, as well as the type of cell within the MEC classification that has become cancerous.

for example, I had MEC, Intermediate Grade Clear Cell Variant.  it is because of the Clear Cell Variant that I had radiation (it responds well to radiation).  despite the size of mine, had it had just the clear well-differentiated margins without the clear cell variant, i would have had surgery alone and would have been considered cured by my ENT.  I would have had to come back in to check for regrowth, but I would have been considered cured.

I am not a doctor, but i have asked a lot of questions and i love doing research, so I spent a good deal of time researching MEC's.  if you choose to research it on your own, make sure it is with good websites, that you avoid the information on canines (as dogs also get MEC's), and that you read the fine print on life expenctancies.  i read one report that had horrible numbers, but when i read the fine print it said that those used in the study were over the age of 70 at the beginning and that only 1 had actually died due to a complication from having MEC.  the rest had died of old age or accidents, unrelated.

it is normal to be worried, but worry can only get you so far.  try to have faith that your doctor(s) is looking out for you and doing the best they can.  I don't know if you pray, I do.  i find that prayer and giving my worries to God have helped me find strength that I didn't know I had...because God knew I had the strength.

Take it one day at a time and before too long you won't find yourself dwelling on that you HAD cancer.  You HAVE a beuatiful life AHEAD of you.Huge Hugs!

ValeIT's picture
ValeIT
Posts: 17
Joined: Feb 2013

Thank you so much for the courage you have, and transmit to others ....

your words are reassuring and I think that in our bad luck we have been fortunate.

I have a small family of an aged mother and a sister who lives with her ​​partner.

I had a life closely linked to the work and career but that is why I do not have a stable relationship status.

Many friends who are close to me, but no husband or children.

and then try to make a healthy life without excesses, do routine checks related to the problems of women, and then you discover that the "beast" is where you would not have ever expected ...it is absurd?

I'm trying to get as much information on this tumor, just because I want to have control.

Thanks again for the help you are giving me.

thank you again!

Stay in touch

Ciao

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