Hi Everyone! I'm new here. In 2004, a dentist discovered a white spot on my tongue. They biopsied and it wasn't cancerous. I didn't worry about it. In 2008, it started to reappear. A dental hygienist suggested it was from a bad crown rubbing the tongue. Then I was taking a heavy duty antibotic for a sinus infection and it went away. This year, it reappeared. I saw a couple of dentists who agreed that it was probably caused by a crown that was too big. They didnt want to replace the crown...but started filing it down. In late August, the dentist filed the crown down so much that metal was exposed. My tongue went crazy. Lesions appeared and it got very angry. I had allergy testing done and tested off the charts for nickel and mercury. They removed the crowns and replaced with temporaries. The lesions wouldn't heal. They removed the temporary crowns because they seemed to be causing problems. Then they prescribed a magic mouthwash. I had an allergic reaction to the lidocaine and started biting my tongue....like 40 times a day! At first, they thought it was TMJ. But, once I stopped the mouthwash it stopped. But I had bitten it so much that it had flattened over my teeth somewhat. After that, I noticed a mass at the back of my tongue. In late Oct. an ENT did 3 area surface biopsies. They came back suspicious. A CT scan showed a mass tumor at the back of my tongue. I was referred to another ENT at Emory here in Atlanta. They put a camera down my nose and exam. The ENT announced that it was stage 4 tongue cancer and may have effected a couple of lymph nodes in my neck. He said my entire tongue would have to be removed plus chemo and radiation. I was a little shocked that he could make such a radical diagnosis so quickly. I had PET scan and another CT scan done yesterday and will know the results Thurs. The doctor said my tongue is dying. I am in shock. It has feeling, taste, healthy blood flow, etc. It is swollen...especially the area that sticks out over my teeth. It also rubs on these teeth and is constantly inflamed. I am having problems talking because of it. . I'm not able to eat solid food because of my bite being off from the incompleted dental work. So, I've been on a liquid diet. My tongue feels strange and changes a lot. This all seems so crazy. We are actively seeking 2nd opinions also. I'm a non smoker, rarely drink...and eat fairly healthy. I still have old amalgam fillings in my mouth.

Wow you're story sounds a lot like mine. I never went so far as to have the crown removed, but my problem with my molar and all of that was the same and ongoing for a few years (old filling fell out - cap put on I may have been allergic to the amalgam in the cap - and had it filed NUMEROUS TIMES!) . I too had an angry red tongue, and finally after having a second molar capped behind the initial trouble maker - I ended up with a lesion!!! I went to another ENT who discovered cancer. The tumor initially grew INSIDE my tongue and the only tell tale sign on the surface was redness and irritation. My tongue was pissed!!!

Anyway.. my tumor thankfully was only a t2 (size wise) I had one node that flared up after my biopsy.

Is the tumor in your actual tongue or down the throat?

I would definitely get a second opinion at a CCC - this is imperative. They may be able to work together to determine if there are other alternatives. Sometimes based on the location of the tumor you may have to have a total glossectomy. This has been done before - we have a long time member who had a similar surgery and is doing amazingly well today. It's been a few years now, but she is back to work, eating and can speak. I think this is likely due to her fantastic drs and perseverance.

You can do this. Hopefully you don't have to - but you can if necessary.

Time is of the essence here. If you have a node or two involved you do not want to be waiting extensive amounts of time.

Hugs and best of luck and most importantly welcome... PS. DO NOT WAIT FOR THAT SCAN RESULTS! Phone and get it now. The results are usually available within 24 hours. Why waste the extra time?

Thanks Cheryl. The tumor is towards the back of my throat on my tongue...but I don't think it extends down my throat. I guess it extends over the halfway part of my tongue and that is why the surgeon said total removal of the tongue was necessary. I didn't know you could get results from the scans early. They gave us disks...that's all.

You can phone your doctor and ask them what the aper results say and then yes it is oral tongue cancer. Our other glossectomy member also had her tongue removed due to location. Definitely get a second opinion and best of luck!

A doctor can suspect its Stage IV cancer but unless they did a biopsy and combined the results with either a PET or CT scan then that diagnosis is guesswork.

Get a second or even third opinion right away from a comprehensive cancer center (CCC). If your situation is as serious as what the doc is saying them you will want to be in the hands of the countrys top doctors who have the most experience.

List of CCCs

Yup - ditto what Christine said. It's a radical surgery. If it HAS to be done then I would jump into it and wouldn't think twice... it's a life and death decision that to me is a no brainer. However, making sure this is the best option is very important. This is where your CCC comes in. If you are being treated at a top cancer center, you can pretty much be assured that it will be treated correctly. Don't get me wrong there are some hospitals out there that have amazing drs, but this is an individual thing, a great dr. does not make a great hospital, and truthfully the comprehensiveness of the care plays a big role. In this capacity the they can't compare to a CCC. Also a CCC, is usually the first one using innovative technology and conduction clinical trials. You want to be where the options are. Your surgery will combine an ENT and plastics dr. CCCs go out of their way to hire the BEST so that is where you want to be.

hugs.

Listen to the posts above and get to a CCC before anything is done and then make the best choice for you!! Good luck and best wishes. Semper-Fi Bob

Wyartjewels: How and who does testing for things such as nickel and mercury that would be in amalgam fillings/caps/crowns. Is there a blood test for such? The local allergist I went to said I would have to have some of the material my dentist uses (or the people who make his caps/crowns) in order to be checked. You mentioned you had allergy testing and just wondered who does such.
julieann