Another Mucoepidermoid Carcinoma

jim and i said:

Welcome Tommy,
My husband has stage four base of tongue, finished treatment mid August and is slowly recovering. I do not have experience with low dose rads as he had full on rads but no surgery. It sounds like your surgeon is doing you a favor by moving the gland to preserve the saliva. The mucus and dry mouth are the worst according to Jim. I pray that you have minimal side effects and a speedy recovery.

Debbie

Hondo said:

Hi Tommy
I am NPC cancer but we are all just one big family here and sorry in one way but happy in another way that you are here with us.

Take care and welcome to the family
Hondo

ekdennie said:

MEC of the hard palate
Hello Tommy,
I also had MEC, but mine was on the hard palate. Mine was clinically stage 4, but stage 2 pathologically (post surgery). we thought it was low grade before surgery and turned out to be intermediate grade post surgery, so I had 30 rounds of IMRT radiation. This method of radiation was great for me in that it allowed most of my salivary function to remain in tact, while still treating the areas where the tumor had been. I had some scatter and a couple of areas where they were not able to block the radiation and ended up with sores in those areas too, but I was able to avoid a feeding tube, but only barely. for any radiation, you should expect that it will be painful and difficult to eat or drink during treatment. you will be very tired. make sure you get floride trays from your dentist...I was told I didn't need them and I have some dental issues that my current dentist feels are a result of the radiation. MEC is very rare and it can be tricky to treat. the reason it is so hard to treat is that it is a type of cancer that involve a mixture of types of cells. for example, my tumor was not just MEC, but MEC clear cell variety. but you can have other varieties as well...some of which respond well to radiation and some that do not. clear cell responds well, so I was very lucky in my treatment. in addition, it is not as important to know what stage the tumor was, but what grade it was. low grade has a much better prognosis than intermediate or high grade. high grade is the hardest to treat. in general, low grade is often treated with surgery. with clear margins low grade usually doesn't require radiation and they can often be considered "cured". Intermediate grade is often, but not always treated with surgery and radiation, sometimes with chemo, but chemo is often not recommended or as successful. high grade patients are often given surgery (if possible) followed by chemo and radiation, but once again chemo is often not as successful as surgery and radiation...they do not know why.
you have to be careful if you read the studies on MEC that show up on the internet, they often show worse case scenarios and in a couple of case the numbers made it look like the prognosis for MEC in the long run was very poor, but when I looked at the fine print, the ages of those used in the study were well over 65 and although it looked like the long-term (5-10 year) prognosis was horrible, only a couple who had passed on had done so as a result of their tumor or treatment...the rest was due to old age or other factors! you also have to be careful in that a lot of the info on MEC's is not directed for humans but for the treatment of dogs, as they also get it!

wishing you much success in your next surgery and in any treatment course you need. I am not online very much at the moment, but I check in every now and then. Huge hugs coming your way!
ekdennie

sukichu61832 said:

Low dose rads
Hi Tommy and welcome to the board. I have learned many things from reading the all the posts as well. I am currently receiving "low dose" radiation. I am getting 5200 to the lymph/neck region as I had one node involvement, and 6000 to the left tonsil area even though I had the tonsil removed by robotic surgery. (not as "low" as one would think) At the time of the tonsil removal, they also did a neck dissection - both sides. I am eight weeks out of surgery and a week into radiation. What I can tell you is I do have problems with my left shoulder and arm from the surgeon messing around with the nerve during the dissection. This is not uncommon, but takes 6 months to a year to heal. I would make sure you get a really good idea of how many nodes they intend to take out, and if they are going to dissect both sides or just one. They took out about 34 of my nodes - only one involved. I am still numb from the top of my ears to my lower neck. Don't be surprised if your surgeon and your radiologist disagree on the amount of radiation you will need. Keep us updated and good luck.