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mucoepidermoid carcinoma

cherylt
Posts: 6
Joined: Jan 2001

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
Posts: 16
Joined: Jan 2001

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

ken12
Posts: 3
Joined: Jan 2015

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's picture
phrannie51
Posts: 4482
Joined: Mar 2012

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

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ken12
Posts: 3
Joined: Jan 2015

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

petroglyph
Posts: 41
Joined: Mar 2014

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's picture
ValeIT
Posts: 22
Joined: Feb 2013

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
Posts: 3
Joined: Jan 2015

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's picture
ValeIT
Posts: 22
Joined: Feb 2013

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

Good day to you!

LeoS2323
Posts: 147
Joined: Mar 2012

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
Posts: 2
Joined: Jun 2015

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.

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