Hi Everyone,

I have been lurking on here for quite some time. Here is my story:

History: Health 37 year old fit married monogamous male. Exercises regularly, do not smoke / use any form of tobbaco, do not drink more than the occasional social drink, no history of cancer in my family.

-December 31, 2013, notice a sore on side of my tongue that burned when I ate spicy food.
- Sore persisted and did not go away. By mid February 2013, while sleeping and snoring my mouth would dry out. I would wake up with severe pain on side of my tongue where the sore was. I knew something was not right.
- Received Dentist appointment for March 3, 2013. Dentist inspects my mouth, I have no cavities, tells me my mouth looks good and tells me my sore is nothing. I do not buy it and tell them I would like to see oral surgeon today and I want it biopsied. I wait 3 hours, finally see oral surgeon. Oral surgeon, biopsy's area, taking fairly large piece, giving me 3 stitches. Sends me home with steroids.
- Friday morning, March 7, 2013 oral surgeon calls me and tells me that the lesion is carcinoma in situ. He tells me he made me an appt for Monday at 9:30 at some not very well known ent oncologist. I am scared to death at this point.
- I call my wife. Through some friends, I was recommended to go see Dr. Urken at Beth Israel. I got an appointment for Wednesday March 13. I had all samples forwarded to him in advance. He confirms the carcinoma in situ diagnosis with his lab after they review. He tells me, lets do some testing to make sure it is localized and then lets take it out. We schedule surgery for April 1, 2013.
-March 14, I get a complete physical workup and CT of the head and neck with contrast. Cancer appears to be local but, one of my lymp nodes was slightly not symmetrical with the other side of my neck. Oncologist reccomends biopsy of the lymp node. March 28, I get the lymp node biopsied by fine needle aspiration with sonogram. Came back negative.
-Monday April 1, 2013 went in for surgery. Dr. Urken tells me right before surgery that once he is operating, he will look at the sample taken out of my mouth and if it is a certain depth, he is going to do a neck dissection to remove my nodes. I wake up 4 hours later, first thing I do is feel my neck, no cuts! It was confined to surface. I had 10 stitches in my mouth and could not eat solids for about a week and a half. No chemo or rads. The hospital released me that same day.
-There were follow ups with the doctor the next week, then again at the end of the month. All looked good.
-June 2013 - followup and oral exam. All looks good.
- August 2013, Head and Neck MRI with contrast. NED. I really did not like the confinement of the machine.
-Follup's oral exam in Novemeber 2013, all good.
-Follow up and PET/CT late January 2014. This time, a little twist. Doctor see another spot in my mouth and tells me he wants to see me again in about a month to monitor it. Now I am kind of nervous. In addition my PET/CT found 2 non specific lung nodules up to 3mm. Now I am nervous.
- I go back in March 2014. Spot on mouth cleared up and he tells it looks good. I spoke with him about the lung nodes and he said he is not concerned about them at all and would not worry. Radiologist recommends rechecking in 6-12 months if no prior CT exists. Urken says lets just get them on the record and over with and do the scan in June. So, i walk out of appointment feeling good. He seemed confident that the nodules are nothing.
-Fast forward to late May 2014, as my test and appointment was pending, I begin to become real anxious about the nodules. I start reading on internet (bad idea) about multiple nodules being a sign of metastasis, etc. I really became very anxious. This forum is one of the places, where I found a lot of reason and comfort regarding the whole situation. Anyway, forward to last week I had CT of chest complete. Nodules still there but there are no new ones and there is no sign of change in them. Doctor thinks they are definitely from prior infection and once again tells me that they are nothing to be concerned over and are just there from prior infection. Radiologist recommends following them according to "clinical protocol because of prior tongue malignancy". Anyways, I feel a whole lot better now that no new lung nodules popped up and they seem to be exactly the same almost 6 months later.

I also feel fortunate that my oral malignancy was confined to the surface and removed but the entire experience has wreaked havoc on my nerves. My advice to anyone is, check your mouth thoroughly and if you notice something that does not go away, insist for a biopsy.

Other thing is, I do not believe my sample was ever tested for HPV, which seems kind of weird. At one point in the beginning I brought it up and never did really get an answer if this is what the cancer could be related to. However, after reading about it, I think it is a strong possibility that it was HPV related.

Anyways, I think this forum is a great resource and I wanted to share my experience. Maybe someday it could help someone else.

Steve