Hi Dan,
My story is similar to yours. I had a spot on the right side of my tongue that hung around for a couple months. It seemed worse at times and then it would seem better. It bothered me when I said certain words. After much debate, I went to the dentist to see if I had chipped a tooth that was rubbing on my tongue. My dentist knew right away that it was something to be concerned about. When he told me he was sending me to an oral surgeon and he wanted me to go THAT week, I knew I was trouble. I had a biopsy the following day. Of course they told me that it could take up to two weeks to read the biopsy and the Christmas holiday was right at the tail end of the two weeks. I went back into the Oral surgeon office and he explained that they found dysplasia and there was a small pocket of cancer that was encapsulated. He assured me that I shouldn't worry about it but he wanted a second set of eyes watching it. I went to the second specialist and he said that I had three choices. #1 Do nothing (NOT RECOMMENDED) . #2 Take more of the tongue to ensure proper margins. #3 Take more of the tongue and do a neck dissection. I chose #3. They had 8 pathologists look at my biopsy slides. 5 out of 8 said it was cancer. This hospital recommended PET and CT scans every 3 months for two years and once a year for the rest of my life. I am now doctoring at Mayo Clinic and my new ENT says that rather than doing the neck dissection he would have injected dye into tongue to see which lymph nodes the dye went to and THEN take a biopsy of those lymph nodes. He assured me that I received proper care but this procedure could have been an option. They plan to do PET scans every 6 months.

My main point is that you have to trust your gut instinct. You have to feel comfortable with your care plan. You have to be able to trust your doctors. You should expect to be monitored for the rest of your life. I really believe that if you can get another opinion it might be best. I believe a true second opinion is not within the same office/hospital. At Mayo clinic they did a very though exam of my neck and tongue. They did a scope down my throat. I guess what I am trying to say is that every ENT has been different for me. One was more passive. One more aggressive. One in the middle. I believe it doesn't hurt to get another opinion. I want to confirm this information but my husband and I heard my doctor say that my cancer was so small that it may not have shown up on a PET scan. I believe that is why it is so important to be diligent in seeing the ENT every three months for a few years.

One thing that is difficult when dealing with a health care crisis like cancer is that there are so many questions and as patients we can be somewhat paralyzed by the diagnosis. We are here to support you, Dan!!!


Lori
Biopsy 12/2017 microinvasive carcinoma measures 0.25 mm
Partial tongue removed & 29 lymph nodes neck dissection
Trying to accept my new normal