recently diagnosed mucoepidermoid carcinoma

giovanni9200

Hello. I have recently been diagnosed with mucoepidermoid carcinoma of the parotid gland. The pathologist said it looks like intermediate grade, but the doctors would like to treat it as high grade because it is affecting at least one lymph node and has invaded my facial nerve on that side. They are planning to fully remove my parotid gland, as well as all the lymph nodes on that side of my neck. They also say that it is likely that they will have to remove the facial nerves on that side of my face, leaving half of my face paralyzed. They are going to do a nerve graft from my leg, as well as transplant some tissue from my leg up to my face to try to restore its contour (as they say). Hopefully I will eventually gain some movement and feeling in my face, but only after many months (the new nerves only grow at a rate of 1 mm per month). About 4 or 6 weeks after surgery, I will begin radiation therapy, probably five days a week for six weeks.

Has anyone out there gone through anything similar to this? Do you have any advice or experience to share? I am 27, and this is all happening very quickly. I have a wonderful support network of family and friends, but I am finding everything overwhelming.

Emmy

RushFan

This is a great place to be
Emmy, so sorry you have found your way here...

I did not have your type of cancer, but wanted to let you know there are many super people here to lend support and advice. I did have daily IMRT radiantion for seven weeks. It stinks, but after almost one year post treatments I can say I'm now feeling great.

Scroll down on the topic main page and look for "Super Thread"...a fantastic resource.

All the best to you.
Chuck.

adventurebob

Hello
Hi Emmy,

Sorry for the road that led you here but glad you found us. I'm NPC myself so don't have much info for you except where our treatments are the same. Happy to share when you need it. There are at least 2 others here (Elizabeth and Nicole) with the same cancer and I'm sure they will be sending you something soon. My only advice at this point would be to go at a pace that is comfortable for YOU. The docs will rush you alot unless you tell them not to. At this point second and third opinions will help with decision making. As Hondo will tell you; make sure to get treatment at a major cancer center.
Welcome to our family. We're all here for you whenever you need us.

Bob

deb e19

Same Cancer Different Place
I too had mucoepidermoid carcinoma but mine was on the base of my tongue and metastasized to lymph nodes on both sides of my neck, so I had the tumor removed from my tongue and bilateral neck dissection. As with everyone else I had 35 rad and only2 chemo Cisplatin because my blood count go too low to do the third. All the people on this site have wonderful information and there will probably find someone whose surgery will be similar to yours. Best wishes and blessings. We all love you.
debbie

Pam M

Welcome
My cancer is different than yours - I don't really have any experience in what you'll go through as far as surgery is concerned (except the lymph node removal - I had two nodes affected, so had the nodes on one side of my neck removed). I do know what you mean about feeling overwhelmed (most here have felt that way).

Glad to hear you have a strong support base. The folks here will help, too - I can't tell you how much info and comfort I've found here.

My only advice for now is DRINK THE WATER, get in good calories, listen to your docs - don't wait until you're nauseated to take anti nausea medicine, and keep your docs informed. Oh, and come to this site often. Do well.

ekdennie

MEC
Emmy, I had the same tumor but mine was on my hard palate (mucoepidermoid carcinoma of the hard palate intermediate grade clear cell variety, stage 2 based on pathology(post surgery), stage IV (low grade) clinically pre surgery). I had surgery to remove the tumor (it ended up being golfball sized...it had grown into my maxillary sinus), then 30 radiation treatments. I know that you will have a rough road ahead of you, but that as you are young, you will heal quicker than most (I was 31 at time of diagnosis last year), I sure did! I still have some side effects from the radiation, but they are getting better and I am learning to live with my prosthetic (it allows me to eat and drink without food going up my nose and to speak where people can understand me). some days are better than others. Look up Kingcole (insert numbers here)...she also went through treatment for MEC and I believe hers was in her parotid gland.
wishing you much luck in your journey and sending you HUGE HUGS because we all need a hug sometimes and a HUGE HUG is more fun! elizabeth

hedgpeth27

Hi, Emmy,
I'm Sharon and
Hi, Emmy,
I'm Sharon and just had a mass removed from my parotid gland four days ago that is intermediate grade mucoepidermoid. I did not have facial nerve involvment and the additional lymph nodes the surgeon removed were negative. I'd like to know how you are doing now and the treatments you've had. I am awaiting an appointment with the Radiation oncologist.

Greend

It is overwhelming !
I assume that they are talking about the trigemanal nerve. While my cancer didn't damage yje nerve the radiation did and the symptoms popped up 13 years later. This was discussed on an earlier thread. If you have actual invasion of the nerve then I'm not certain what if anything can be done (I assume that is what you have)because I've not been treated for that but I certainly would get a second opinion. If by chance it could be scar tissue then there is a new test treatment that my Dr at the Kirkland Clinic was willing to try, a teflon patch imbedded with steroids.

I remember when this all started one day I just literally said "STOP". I drove over to my family practice Doctor and asked him to explain all the garbage tyhat everyone seemed to be throwing at me asked his opinion and what he thought the ramifactions of each would/could be. Didin't change much but at least I felt somewhat in control again.

hatim

how are you now??

how are you now??

TracyLynn72

hatim said:

how are you now??

how are you now??

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