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

Welcome to OCF! Thanks for taking the time to write your story. You have been thru alot but lucky your cancer was found very early.

You questioned about being HPV+. Usually the location of HPV+ OC is base of tongue or tonsils, not on the side of the tongue like where yours was located. Treatment is the same regardless of what caused your cancer. There are many here who have no known cause.

Great story, Steve! Thanks for sharing your experience. I'm sure many will benefit from hearing it. Welcome!

I went to 5 cancer docs before I was treated and if I had stopped at number 3 I would be dead today. Actually it was my wife's persistance that I continued to see doctor after doctor but the moral of your story is right on.

It's very very very doubtful as Christine said, that the location of your cancer was caused by the virus.

Congrats and lets hope you are NED forever.

Welcome Steve! You're in good hands with Dr. Urken, who is one of the top ENT's in the country. I was also treated at Beth Israel, and was just there on Tuesday to see the oral surgeon. Doesn't sound like HPV-16 for the above reasons, which usually doesn't present itself as an ulcer.

Thanks for sharing.

Hey welcome... great story. I had a similar cancer and I had the works! surgery, ND, rads and chemo. Your dr. sounds great and did his due diligence. It is HIGHLY unusual for a lung nodule to pop up with no nodes involved and be metastatic. Chances are it's as your dr. says. Environmental. Thankfully. ;o) Hugs and many blessings to you.

Welcome Steve,

Excellent intro, and thanks for being so thoughtful to append signature giving your history.

Like the others before me, I am delighted to read that a) you're in such good hands, and b) that the nodes in your lung were not cancer! I agree also that HPV was not involved.

I wish you continued good fortune with a complete recovery and no recurrences!

Bart

Steve,
Thanks for the great post. It is concise yet through and hits all the key points. Especially the first one - asking for the oral surgeon to take a look and grab that biopsy. Even though many more dentists are cancer aware, far too many gloss over cases just like yours. Wonderful outcome as well.

btw - I had worrisome nodules showing on my lungs too. A scan at 8 month from diagnosis showed they were gone and my one year post tx scan shows nothing so final sigh of relief on that chapter.

Good luck, Don

Hi Steve,

I also had a small pulmonary nodule on an Xray before. I had to wait 6 months to get it confirmed. It went away. I had another follow up Xray and it is no longer there.

I've heard of other people who have had several nodules located all over, and after years of monitoring, they were ruled as being persistent lymphapathy probably due to some viral nature. Nothing to be alarmed about. Just get those xrayed every 6 months.

Thanks for sharing your story Steve. Stories like yours often contain key words that bring people here. I think I googled metastasis among other words and was lucky enough to find this place through a story like yours.