Hello, glad I found this site. I am 30 yrs old, female, pretty healthy, and was diagnosed last month with Low-Grade Mucoepidermoid Carcinoma. I am still recovering from my latest surgery, and found out at my check-up yesterday that the DR. found a different tumor while he was cutting out the first one. They got them both, and all of my margins were clear, but now I am even more freaked out. Has anyone had any experience with this? And do you know of any sites that where I can do some research? Thanks for your help.
I see our leader Brian Hill is online, I bet he will help you .Heck, he knows as much or more that some MDs.
I have MEC also. I am a 68 yr old female who was diagnosed in early 2009. I have had 2 surgeries and am getting ready to start 6 1/2 weeks of radiation therapy next week. My cancer was in the Rt Sub-mandibular gland. I recently learned they found 4 areas in the upper neck tissue from my Neck Dissection that were cancer. They were small tumors. Everyone was surprised to find the other 4. These 4 did not show on the CT. That makes a total of 5 tumors for me.
This site has excellent information on MEC.Use the search on the bottom of the Home Page and the search on this page. Top Rt hand side. Hope this helps. Our cancer is listed as a rare cancer so its always nice to find somebody with the same type.
SweetPea, I'm sorry to hear it has spread to your neck. Best of luck with the radiation. My doctor seems really laid back about this whole thing. I had a CT scan, it didn't show any cancer in the bones or in the lympth nodes, but I'm wondering if I should get a second opinion, just to be sure??? My doctor is an ENT and a neck/throat oncologist. He just wants to see me twice a year for a check-up. Does anyone know of a scan that would show if there were more tumors in the roof of my mouth? Since mine was in the soft palate (roof) of my mouth, I have read there is less chance of spreading, but I know it's possible. I am just hoping that this is the end of cancer for me, but I worry that it's not.
A second opinion sounds like a good idea to me .Two different tumours sounds like perhaps the opinion of a cancer centre might be prudent.
Oftentimes it appears to me that we are reluctant to seek other opinions for fear we may offend someone. These people are just as human and prone to be stuck with their opinions as we are in our own respective careers. Hell I recommend my tax clients seek other opinions over something as trivial as tax consequences. An estimated 10% of my practice is correcting other "experts" mistakes. Here we are often talking about one's life and at a minimum life altering side effects so do yourself a huge favor and seek all the opinions you need to satisfy yourself that you are doing the best you can to deal with your situation.
Thanks to everyone for the comments. I am going to call another DR today for a 2nd opinion, just to ease my worries at least. I forgot to mention that my cancer is in the roof of my mouth, which I've heard is way better than the tongue or throat, but I'm still worried because there were 2 tumors. And I've read that they can be caused from the HPV virus. Does that show on the pathology report? I don't think mine would be, but who knows? I think it would be important to find out for sure. Thanks again for all your comments.
It's my understanding that HPV status would show up in a pathology report only if the tumor samples were specifically tested for the virus. That said, I believe that every person here whose tumor was HPV+ had his or her cancer at the base of the tongue. For head and neck cancers, I don't believe it has been identified as a causative factor for SCC tumors in any other location (e.g., mobile tongue, cheek, etc.), and I don't know whether it's been linked to MEC.
So far HPV has only been associated with Oral Cancer in the Oropharynx region which is primarily the Base of Tongue and the Tonsils. HPV is associated with over 70% of the cancers originating from that region in the Squamous cells, hence Squamous Cell Carcinoma and no other oral region. There is only one way to be tested and that is to have your cancer cells sent to a HPV testing facility.
What we know now
http://www.oralcancerfoundation.org/facts/rare/mc/index.htmHPV16 has not been associated with this type of carcinogenesis.
Thank you, I have gotten more info from you guys than from my DR. Time to get a new one. My husband works with a guy who has had mouth and neck cancer, and he's getting me in touch with a specialist at the Huntsman Cancer Institute here in Salt Lake City. I'll feel better after I get a 2nd opinion. Thanks for all of your info.
