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

alligatorpointer said:

Italy and protocols

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.

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.

katenorwood said:

Welcome to the site !

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 

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?

fishmanpa said:

Pets and cancer

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"

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

NJShore said:

Our neighbors cat

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

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

ekdennie said:

mucoepidermoid carcinoma

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

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 said:

MEC

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!

e 

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