mucoepidermoid salivary gland

stay2ce21

doc1955bob said:

MEC of minor salivary glands of hard palate
Hi! Kosshan,
No reply from you. Good to know you survived MEC of salivary gland. Please let me know which part was affected- soft palate or hard palate? And you didnt have radiation or chemotherapy. I am intersted because my 20yr old daughter was diagnosed with MEC of hard palate and surgically treated in Oct 2009. No radio or chemo was advised. By God's grace she is Ok now. But I am afraid it may come back or spread to other tissues far away.
Please reassure me that it's gone forever.

MEC in 1998 and no reaccurrences
I was diagnosed with MEC in 1998; had surgery and I havent had any more problems. It started with a small area in the top of my mouth about the size of a dime and there was no pain ever. I lost a few teeth in the top and I'm still here. I am thankful today that I can say I'm cancer-free. I would love to have my mouth fixed with a new set of teeth tho so I can smile again like I use too. Keep the faith I'll be praying for you and the family. God bless

tommyodavey

doc1955bob said:

MEC of hard palate
Hi Shylow,
How s your daughter now. My daughter had this Mucoepidermoid of hard palate and operated in 2009. But radiotherapy not advised. Now she is OK, but I have my fears. What about your daughter?

Mucoepidermoid Carcinoma BOT
This particular forum sure doesn't get many people in it. I was just browsing around after reading the posts in the Head & Neck section. Most of the MEC folks are there.

I had noticed a lump on my right neck almost a year before being diagnosed. Just figured it was a swollen gland due to my sinus problem. Went to four different doctors in those early months and they all said not to worry about the lump. It will go away on its own.

My wife and I moved to NV last summer and my sinus infection roared its ugly head. That was the reason for seeing so many Dr's before, they just couldn't cure it. Had to find a new ENT who would see me right away and found only one. She put me on very strong antibiotics and was told to return in 10 days. She too was shown the swollen gland and dismissed it until my followup appt. The infection was gone but the lump was still there. She scoped me and found a 2.8mm tumor on the base of my tongue. She could not believe that I couldn't feel it. Later I was told it was common not to feel a MEC tumor. She thought I had Lymphoma and I was scheduled for a biopsy. That's when the diagnosis came back as Mucoepidermoid Carcinoma. Very rare I was told. She referred me to the best Head and Neck surgeon in town, along with an Oral Surgeon and a Radiation Oncologist. That was in Oct of '11. Had a partial tongue removal in Nov and that was the worst pain I've ever felt in my life. Could not swallow even water. Lost about 6-8 lbs before it healed enough for me to eat soft foods. (5-6 weeks)

Dec was a healing month and then I had a radical neck dissection Jan 7,2011. Two lymph nodes were positive and around 45-60 nodes were removed. I still have numbness and arm/shoulder pain from stretching the nerve so much. PET scan before it showed cancer of the tongue and lymph node. T2N2M0 Low grade MEC with clearly defined margins. That meant no Chemo was needed, only Radiation. Six weeks after the last surgery I started low dose radiation therapy. Very grateful for the low dose. (30 sessions)

I am now five weeks post radiation and still have throat sores and arm pain, but overall I am so lucky to have had the low grade version. So now I am considered a Cancer Survivor. My next PET will be in five months.

There are a couple of pics of my neck and the radiation machine on the expressions page in my profile. Just click my pic if you're curious.

Tommy

hatim

kosshan said:

I was diagnosed with this cancer (low grade) on December 7th of 2006. On December 14th I underwent surgery and had it removed. Lucky for me they removed it all and I didn't have to undergo Chemo or radiation. It has only been a few months, but I am so thankful to the Docs at U of M in Ann Arbor. I'm 36 with a 2 and a 4 year old, and I wasn't about to leave them. I do have to wear what they call an obturator. It is basically a retainer that is extra long. They had to remove my whole soft palate, including my uvula (that dangly thing that hangs in the back of your mouth). I talk more nasally than I did before, and I had to get a tube put in one ear because my eardrum collapsed with the lack of musculature left. They can do reconstructive surgery by taking skin from my wrist so I'm considering that. The price is pretty steep, but I'd like to go back to teaching once both of my kids are in school so I'll need to talk a little better. This may sound grim, but I'm actually happy with the results. This cancer is NOT a death sentence if it's Low Grade like I had. Please email me if you have any questions. I'd be happy to try to help.

just diagnosed with low gade MEC

how are you now?

hope you are fine

 

thanks

Elfloridita

Low grade much epidermis carcinoma

hi all I am a 30 year old mother and was recently diagnosed with a low grade Mec on the tip of my tongue the size of a lentil I'm not even sure how I found it. For momths they told me it was a blocked salivary gland and had to really push for a biopsy. It came back as cancer and they removed it 6 weeks ago. They then told me that the margins were clear but a week later following a final pathology review they said they found a tiny foci of neural invasion 1mm from the margin. I went in yesterday for another wide local excision. My consultant is saying this is to ensure no further local invasion and this is still a very low grade cancer. He doesn't want to do any radiation as he says the tumour is indolent and has low metastatic potential. I am feeling very worried and find it difficult to trust, especially after getting a call to say it was clear margins. Although I am trying to focus that at least they found the other thing with the keen eye of one pathologist. Really struggling with it all and know my mindset is. To helping.