mucoepidermoid carcinoma

cherylt

My Mom just got diagnosed with mucoepidermoid (intermediate) carcinoma of the salivary gland. .
I would like to correspond with someone who has somewhat same situation. They are planning a neck
resection later this month, with follow-up radiation. I am very afraid for her.

jackie7964

Cheryl, I posted a somewhat detailed reply to you in the mouth cancer forum. Jackie

ken12

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

phrannie51

ken12 said:

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

This thread is

14 years old.  I think if you start a new thread of your own, you will get more response.

p

ken12

phrannie51 said:

This thread is

14 years old.  I think if you start a new thread of your own, you will get more response.

p

Thanks, i am do new and

Thanks, i am do new and scared is my first, 

petroglyph

ken12 said:

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

Welcome ken12
You are in a

Welcome ken12

You are in a good place here, yes many of us have or had neck resection surgery. 

From what you have posted here it sounds like your husband is doing terrific. 

Can I suggest finding also a local cancer survivors group that you can attend. There is no equal to the value of being able to share with others that have gone before us. The groups are in  most towns, it took me a while to find mine. Start if you don't already know where to go by calling your local American Cancer Society, they may be able to steer you in the right direction?

If no results, your local cancer affilitated Dr's, oncologists, or ent should be able to help you find your local group. It makes me feel better every meeting I attend, you will be welcome there as well. 

The survivor groups are not just for the people that have cancer, it is for those that have suffered from it, be it loved ones, the afflicted or anyone that needs the help and comaraderie of the group. 

Keep coming back here and there and you will find things that help. No matter what, part of our journey we have to walk alone, but for the rest there is some very helpful company.

Head and neck SCC is one of the more survivable cancers, thank God. 

ValeIT

ken12 said:

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

ciao

Hello, I'm Italian and I'm so sorry but I use the online translator.

I had a low-grade mucoepidermoid carcinoma in a minor salivary gland in the retromolar area.

The surgery was in 2012 and I was 48 years old.

No therapy but only periodic checks every 4/6 months now.

Every year I do an MRI and nothing else.

Do not worry it is a tumor not aggressive and has a very high percentage

  of total cure.

How are you now?

ken12

ValeIT said:

ciao

Hello, I'm Italian and I'm so sorry but I use the online translator.

I had a low-grade mucoepidermoid carcinoma in a minor salivary gland in the retromolar area.

The surgery was in 2012 and I was 48 years old.

No therapy but only periodic checks every 4/6 months now.

Every year I do an MRI and nothing else.

Do not worry it is a tumor not aggressive and has a very high percentage

  of total cure.

How are you now?

Mucoepidermoid

Hi, I am better, thank you for the good news Ican say they really help , we doing ok need to have 6 months appointment  in June , we have to go along with life no ? all good , M. All the best to you too 

ValeIT

ken12 said:

Mucoepidermoid

Hi, I am better, thank you for the good news Ican say they really help , we doing ok need to have 6 months appointment  in June , we have to go along with life no ? all good , M. All the best to you too 

ciao

Hello, I must also make checks forever ... for me the next visit will be in October.

Good day to you!

LeoS2323

ken12 said:

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

MEC

Hi Ken

I was diagnosed with MEC back in early 2012 at the age of 33, just completely out of the blue I woke up with a big lump in my neck. Hadn't been to the doctor for ten years, fit and healthy and never smoked a single cigarette in my life. I did a lot of research and what I would say is that in the grand scheme of cancers, ours is rare but not too bad. I had a neck dissection but no radiation or chemo - so far so good, I am over 3 years out now with nothing but clear scans and check ups.

The neck dissection sounds worse than it is - I didn't have any major issues after mine, and I found the post-op pain much worse from the tonsilectomy and base of tongue 'slice' they did at the same time than the dissection. The neck feels very 'tight' for a while and if I stretch it out I still feel it a bit but you get used to it - the body is amazing and eventually most of your feeling comes back. It took about 2 years to lose the numbness in my ear, but we got there in the end!

I was back playing football (soccer as you call it in the States) about 3 months after the dissection, so its amazing what you can achieve with some determination. A positive attitude will really help - don't let it get on top of you or your husband, show the cancer you mean business!

I haven't been on for a while, but I called in and wanted to post as I always found the positive stories from fellow MEC people very encouraging. 

Wish you all the very best of luck in your journey.

Cheers

Leo

 

prashantkrai

ken12 said:

Mucoepidermoid low intermediate salivary gland

Hi, my husband was diagnost with same , had surgery from 3 months ago, is very scary , no radiation had negative margins , is home recovery is well and that is all , just 1 month, then 6 months follow up , is anybody in the same situation? it seems not fair, how they keep it in control ? What am I suppose to do , any extra test to be done? My husband is in his early 40 , is really scary i donot know how to get trough ... Thanks a lot if somebody is in the same situations pls maybe we can communicate , 

Mucoepidermoid low intermediate salivary gland

I also had intermediate grade 1.4 CM MEC in palate, staged as T1N0M0. Although my surgery (done on 10/1/15)was negative but it was close from one side, so doctors suggested radiation might cover the small risk of local reoccurance. I will be going for 9 month check up in couple of weeks. Best of luck.

megangray333

My MEC

I am 17 years old and just finished treatment for my MEC. I was diagnosed at 16 and had a major surgery to remove the tumor. My tumor was in the salivary gland and I am doing better. I was treated at University of Michigan Health Systems and it was amazing. My surgeon is the person that I look up to the most and this experience had created an interest in the medical field for myself, especially oncology. I had a scapula transplant, which means that my doctor took a piece of my shoulder and replaced the piece they took out with the tumor in it with my shoulder. I have a 6+" scar on my side, and one on my face below my jawline from connecting the veins in the piece of shoulder to the ones in my face. I did not radiation, but it was a possibility for me. I was put on a feeding tube for about a month and lost close to 20 pounds as well. I lost a few teeth in the back and will be getting teeth implants in January. Please let me know if you have any questions. This cancer is usually very low grade and slow growing. Not very aggressive. Hope all is well.

Megan Gray

tommyodavey

Welcome

Hi Megan,

We shared the same type of cancer with mine also being low grade with clear margins.  Doing the research on this type the information stated it normally affects young people & those is their 50's.  I was 56 when I got it.  Unlike you, mine was on the base of my tongue so the surgery hurt like 10+. It sounds like you're doing good now, as am I.  Being such a rare cancer I'm always on the lookout for others who come here with it.  Normally, it hits the salivary gland, like you.  My doctor couldn't even find another case study to use for my treatment so we just kind of guessed. Surgery to remove the tumor, a right neck dissection to get rid of 2 positive lymph nodes, and then radiation.  No chemo for us as it doesn't seem to help with this type.

Keep checking in as often as you can.  This site needs a few more members with our kind of C.

Glad to hear you're doing alright,

Tom

aes2017

mucoepidermoid carcinoma - minor saliva gland - Stage 4

I was recently diagnosed with Stage 4 Mucoepidermoid carcinoma of the minor saliva gland in the roof of my mouth.  Had a very aggressive surgery to remove the tumor that had spread from my minor saliva gland in the roof of my mouth (painless lesion) up through the palate bone and into the nasal cavity.  The surgey removed a portion of my upper jaw bone, three upper molars and most of my palate and everything internally in the right side of my nasal that was impacted.  Major life changes for a person that didn't even know they were sick.  No radiation as surgeon is confident we have clear margins.  I do have an obturator which is a beast and I go for weekly adjustments.  I've lost 18 pounds because of difficulty of eating, fatigue, etc.  The surgeon has told me I'm not a candidate for reconstruction surgery for the jaw/teeth or a flap to close the huge hole left by the surgery.  Said the benefits do not outweigh the aggressive surgey on both those reconstructions.  My remaining teeth have shifted since everything in my mouth is different.  Still have numbness in portions of the right side of my face.  I go weekly for adjustments for the obturator and for physical therapy since the muscle was also removed with the upper jaw bone.  PT is painful and I hope to be able to open my mouth to eat better at some point.  A new sympton that has cropped up past week is the constant feeling of needing to pop my ears, ear pain and fullness in the ear on my surgery side.  As if I have water stuck in my ear and I just need to shake it out.  Driving me totally nuts.  I can't open my mouth to yawn, I can't hold my nose and pop it via pressure since things are different inside my mouth/nasal (just don't work like that), can't chew gum because I can't have anything that might choke me or get hung on the obturator.  Has anyone else experienced this?  My concern is I'm flying soon and I have no clue how to pop my ears.  My surgeons office saw me last week and didn't know how to answer this.  I have lots more questions just looking for someone that has this type of cancer to network with.  Thank you so much.