Hello all. Nice to be a part of the group. I was diagnosed with Stage 1, low grade mucoepidermoid carcinoma located in the bridge between the hard and soft palate. I have had a wide excision of the tumor on Aug. 12. I have an opening into the nasal mucosa and wear an obturator to cover so I can eat and drink. When I was first diagnosed, I was shocked but doctors said resection would take care of it. After surgery with clean margins, I thought I was done and cancer was gone. Now because one margin was very close to the hard palate, they want to irradiate the roof of the mouth as well as the lymph nodes of the neck. I want the best outcome for long survival with the least amount of side effects, but after talking to the oncology nurse ,I feel like I will have very harsh problems in the mouth and thyroid as well as lymphedema,etc. I am wondering if at this stage, should I have all this radiation? Anyone have this decision?

Hi Cyndie
Welcome to OCF. You have found a wonderful place to come for support. My sister does not have the same cancer as you but was diagnosed with tongue cancer. She went in for surgery with removal 3/4 of her tongue and reconstructed with a flap from her forearm. On her pathology report her margins were clear except one was very close so her dr's recommended radiation too. She is getting her tongue and neck done also. Her nodes were clear too. Yes radiation does stink but in the long run I think u will have peace that you have done all you can.

Where are you being treated? You can and sometimes should get another opinion from a Comprehensive Cancer Center nearby.

CCC's

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

BEST CANCER HOSPITALS

http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Welcome to OCF Cyndie. You will find lots of info here and also on the main pages of OCF. There are also many wonderful members who will help you along the way. Wishing you all the best.

HI Cyndie,
Welcome to OCF! I was diagnosed with low grade MEC but after the path report from surgery came they changed it to High Grade MEC. I had the everything but the kitchen sink thrown at me but mine was a stage 4 already. No matter what you decide, it needs to be something you would be at peace about, you don't want the "what if's" stealing your joy in life.

Hi Cyndie
Not a lot of us MEC's here. I was originally told that since I was Stage 1 surgery would be the end of it. Then I was told that because it was on Perinerual tissue I had to have radiation. It was propably the hardest decision I have ever had to make. The resulting damage from the radiation was and is as much of a concern as the cancer because of the long term effects. It was very painful and in my case I didn't handle the pain meds very well which landed me in ICU for 11 days. I am four months out I feel great but about a week ago I was having pain at the surgical site. Could be healing, nerve damage or a recurrence of the cancer. I am now on an every other week visit to have the area examined. I seem to be the only person in my world that feels that is not a good sign. From what I have learned most of us start with a lower grade but after surgery we are changed to High Grade which has to do with multiple factors. Only you can decide whether or not to do the radiation, I talked to everyone I could think of and researched until I was crazy. The bottom line is that no one on earth can give you the answer. Either we have radiation or we don't. If you have questions or want to know more please feel free to send me a private email.

Welcome to our world. I was originally told I had Intermediate grade, which would have left the decision for radiation up to me. At my follow up apt., after surgery, I was told that it was reclassified to High Grade, and radiation was necessary. Radiation was painful but survivable and the peace of mind made it worthwhile. How are you coping with the obturator? That has been one of the biggest challenges.

Sharon

Hello Cyndie:
Everyone has a different story but all I can say is radiation and chemo is probably the reason I'm still around! About 5 months after surgery something "Just wasn't right." My original surgeon wasn't a big advocate of radiation due to the long term side affects and my age. After partnering with a colleague who braced me for a "real surgery" (Like the first one wasn't enough), my second surgeon wanted his Team to try radiation and chemo as an alternative, saving a second surgery as a final option. I am thankful every day for the outcome! There are great resources here to help you through. Life is full of options and the "What ifs" Elizabeth mentions, but follow your heart after doing your homework. As Sharon stated Radiation is not fun but it's survivable.
Keep the Faith
Warm Regards,
Steve

Hi Cyndie- You have probably already decided something one way or another-- I was just going back and reading old posts. From the research I have done and what I have been told by several different head/neck doctors is that mucoepidermoid CA can be very aggressive, esp. if it is a higher grade, but can also be a lower grade and have poor outcomes. The primary treatment is surgical excision but if a 1 cm. clear margin is not obtained radiation is pretty much standard. Because mine was high grade radiation was recommended by two different tumor boards, even though T1, NO, MO. I'm not looking forward to the side effects but if I can wipe this thing totally out it will be worth it.

Good luck to you-- there aren't a whole bunch of us with MEC so I am always eager to hear how others are handling it!

I wish you well through this battle you are and will be going through. I was diagnosed with stage 3 tongue cancer, and was told before surgery it would be up to me if i had radiation or not. After surgery, they told me i had to have radiation and chemo. I got them to back off on the chemo, but had 30 rad treatments.

It's a tough thing to go through, but I am finding that almost all of the side effects i got during radiation, which was almost every single one on the list they gave me, even the ones they told me i wouldn't get, are all almost gone and i have only been out of radiation for 3.5 months now. I know it's not the same for everyone, but considering i had so many and they were so bad, that gives some hope right?

I hope whatever you decide is your choice, and not something someone told you you should do. All anyone should be doing is giving you personal experience, maybe some advice, but ultimately it is ur decision.

I am not happy that i had to go through radiation, but i do say that i am more hopeful and believing that i won't have to deal with anything else with this cancer due to surgery, then radiation.

If you decide to have radiation and have any questions, ask away and i will do my best to answer.