Hello: I was diagnosed on Tuesday with mucoepidermoid carcinoma on the left palate, Grade II, by an oral surgeon. I have a follow-up appointment with an ENT next week. I am full of questions. Is an ENT the most likely doctor to treat the cancer? I read some of the previous posts and see that it is rare to be in the minor salivary glands on the roof of the mouth. I would like to know what to expect from surgery and radiation treatments. Is surgery an outpatient or inpatient procedure? What is the recovery like? I know my mouth is very sore from the incision the oral surgeon made to remove the tissue. I can't imagine the pain and healing that will come with having more of my hard palate removed. I have also had a lot of excess fluid in my left ear and wonder if there is a relationship with the tumor. Any input I can get from others who have experienced this form of cancer will be most appreciated. I am also a thyroid cancer survivor of 19 years and wonder if there is a correlation between thyroid cancer, the radioactive iodine treatment and salivary gland cancer. Thank you and God Bless.
Anita

Hi Anita, and welcome. To the best of my knowledge, and there are many here more knowledgable, the ENT usually does a biopsy and is the one to diagnose the cancer. He then turns you over to the oncologist who discusses your case with a tumor board and they decide on a tx plan. I don't know about the surgery but the radiation is pretty tough going. Eat whatever foods you like now, as it may be some time before you'll be able to eat solid food, and that's from the radiation. The surgery sounds like it will make eating even more of a problem. Best of luck to you amd congratulations on beating cancer 1st time around.

Hey there - there are a few people her who've had a similar cancer I believe - try to find some of their postings this might give you an idea of what you are facing specifically. And I'm sure one of them will be long to help answer ome of your questions soon. With regards to the dr. Deejer is right - your ENT should pass you on to an oncologist. You should go to a ccc - comprehensive cancer center - that's the best place to get treatment for head and neck cancer. If you aren't being seen at one try to get a second opinion there.

With regards to the surgery I think it all depends on the size and how invasive the surgery is going to be - but I would say the surgery will have you in the hospital for a few days at least. I'm not sure what recovery will be like because my tumor was in my tongue - but the hospital should be able to keep your pain under control! if you have to have radiation and chemo, it's not easy - but doable - it can cause fatigue, mouth sores, skin redness and blistering - difficulty swallowing and swelling. The radiation itself doesn't hurt but the fallout from it it cumulative - and gets worse as you get towards the end - and it lasts for a few weeks after.

Chemo if you have it can cause nausea, and ringing in the ears and tingling in your extremities. There's more but this are the main ones.

It's possible your ear trouble my be related to he tumor, I had ear aches - not fluid though. As for thyroid cancer I suppose they are related in that you've already had cancer so it leaves you more susceptible - the Drs. Can better tell you if there's a relation between the two!

I wish I could answer more for you but without more specifics I don't want to mislead you! Best of luck... And take care and sorry you have to be here!
Oh and congrats on being a long time survivor! You did it once you can do it again!

Sounds all too familiar. Yes, same type of cancer in the same location. I also had a lot of ear pain, and problems with equilibrium prior to surgery. I also had been diagnosed with hyperthyroidism three years prior to my cancer diagnosis and was treated with the radioactive iodine. I asked the same question, could there be a link? Most doctors did not feel that there was a significant link. I have posed the question on the forum to see if there were others.

Now to your questions. The surgery will be in-patient, expect about two to three days. Since this type of cancer and surgery is so rare, I did go to a surgeon that was recommended through a cancer center. One of the most important part of the whole process is finding a really good Prothodontist. I presume they have given you information regarding the need of an obturator (prothesis), that you will have to wear following this type of surgery. I don't want to take up space with information that you may already have, but if you have specific questions regarding this or any part of the procedure please ask.

The decision to do radiation was based on the grade and margins. Mine was determined "high grade" and close margins so I had radiation, but no chemotherapy. Just remember we are here to support you and answer questions along the way.

Hi Anita,

I was diagnosed with mucoepidermoid carcinoma on the right side soft palate on 8/3 (I had my first oral surgery the week prior to remove the tumor for biopsy by my oral surgeon)

I then was referred to an ENT at Univ of Washington Med Center. I was lucky enough to get in with Dr Futran, who now I know is a really good surgeon.

I had my 2nd surgery on 8/31 (so I am on my 4th day of recovery) My surgery ended up just being an outpatient surgery (I was fortunate enough that my CT scan came back clear and nothing had spread into my bones) This surgery, he removed an area a little bit bigger than a quater, and as deep as the roof of my mouth. He covered it with some type of bio-skin (I forget the actual name) but the whole is covered and well stitched. As for recovery, he had to scrape around my jaw and I have pretty severe ear pain, and I have a very serverly sore throat, I think mostly due to the tubes inserted during surgery.

I return on Tuesday 9/6 for a post-op check up and we hope this next pathology report is back, that the margins from this 2nd surgery are clear! If not, then my ENT along with the tumor board will go from there and come up with a treatment plan.

Message me if you ever want to talk - I am right there with you, it is a good feeling that we don't have to do this alone and that there are others out there with the same cancer to battle.

Hug and prayers headed your way,
Linda

Thank you to all for your replies. It is very helpful to hear about your experiences. I have an appointment with an ENT on Thursday afternoon and a second opinion ENT appointment next Monday. I will advise the outcome. Prayers and hugs to each of you, too.

I too am a recent MEC patient. Intermediate grade on a minor salivary gland at the right base of tongue. An odd situation. One thing to keep in mind. MEC is not well treated by radiation. Surgery is the primary way to treat MEC.

I wish you only the best. Let us know how things go.

Hello all: Had outpatient surgery yesterday to remove more tissue and get pathology report. The sample the ENT took was completely clean. No evidence of cancer. Thank God. My oral surgeon took it all in the first excision. I am recovering at home and doing remarkably well. I have only a dull ache in my mouth and am eating soft foods and rinsing my mouth with water after each bite. Thank you all for your prayers and support.

Anita

That's so great Anita!!! Congrats!