It has been 16 months since I had a 1cm squamous cell carcinoma removed from the right side of my tongue. I had quit smoking 3 years prior to the occurence. But not long afer I had quit smoking, I would suddenly develop 'thrush' like symptoms (burning tongue, sometimes white patches), it would be effectively treated with oral Diflucan, but in a 30-90 day period of time it would reoccur without reason. I began to get 'use' to the pain or burning of my tongue to the point that I felt like I was being presumed a hypochondriac when I would seek help, so I started just "dealing" with it. Some days were worse than others, some days water would wreak havoc when I tried to drink it. Ice made my tongue feel like it was on fire and goodness forbid I eat anything salty or with vinegar (my favorites).

After having this odd issue with my tongue off/on for roughly two-three years, I suddenly noted that an area of my tongue was 'sorer' than the rest and eventually the white area consistently burned and hurt to hit my teeth. My dentist felt that I was probably scraping my tongue or biting it at night when I slept, so he made me a mouth piece to alleviate the stress. (I was also in nursing school at the time, so the stress theory was certainly plausible.)

It almost seemed that the area was getting a little better for a little while, then suddenly it only got worse. I dealt with it, until one day I went to my regular physician with complaints of kidney stone-like pain and as we walked out of my examination room talking, I remembered to mention my tongue AGAIN. This doctor had been the one to treat me for thrush repeatedly. I just randomly asked him to look at this area of my tongue that was bothering me. He immediately said, "I think you need to see an ENT for that.", an appt was made and within 2 weeks I knew that the area was in fact SCC stage 1 and that my best therapy would be surgery.

Ok- after surgery for a few months it was expected for my tongue to 'hurt'. But then after 2 months I developed a very sore area to the scar areas, this was biopsied- normal, a 2nd biopsy a few months later near the scar- also normal. Amazingly enough, my tongue was very temperamental for almost exactly a year. My year for surgery was May 3, 2011. On that day in 2011, it was like my tongue realized we had been a year since that horrible monster, and it seemed to 'calm' down. I know that sounds crazy and it looks really crazy as I read it here. But for at least 2 months post my one year anniversary since surgery, I had basically NO pain at all. My tongue's sensitivity was of the past.

Then this month, I started having issues again with feeling my tongue is 'burning'. I read a few entries here about other people having something similar. And one guy had posted pics of his tongue. (mine will sometimes have those same small red bumps that appear inflamed- I jokingly say that it looks like my tongue is having an allergic reaction. And I have a pronounced geographical change in the crevices of my tongue during these sensitive phases, they appear to be deeper.) Maybe you guys/gals have had this experience as well and can give me piece of mind that this is normal and that it's something that I can expect?

Is there something I can do to alleviate the distress of the pain? Or can it be a precursor for another bout of "Ca Ca" tongue to look forward to? I did not have radiation or chemo with my 'ca ca', it was completely removed with surgery. Was that wise? Is it possible that I should have opted for some kind of treatment to ensure that any cells that might be considering the same changes woulda been wiped out or forewarned? On a serious note, I do fear this, but I don't usually let it define me. Shoot, I'm a Hospice Nurse (I was already working for hospice at time of my diagnosis.), as a hospice nurse I see many things that are scary but spiritually I am strong and I know that I could just as easily die tomorrow in a horrible car accident or worse. It won't keep me from getting in my car! Anybody have any feedback that might be helpful?

This is the first time I have discussed/typed my story, so forgive me for rambling. Thanks for having this site, I do feel that I can relate more to ppl that have had similar fears that I have had. Blessings to you all!

This message has been edited. Last edited by: Dr Vinod K Joshi,