Hi everyone..

I have been reading here for about a month now and have just decided to post for the first time.

About a year and a half ago I noticed a feeling of "peeling" on the roof of my mouth. I went to my reg dentist and then off to an ENT. Both said it looked ok and sent me on my way. The feeling has never went away and about 4 months ago, I started getting un-bearable head pressure and a mouth lump that is located behind my wisdom tooth on the upper part of my jaw. I go back to the dentist and he does another oral screen on me and says he sees a red patch on the top of my mouth but it does not look suspicious to him at all. He states he has seen it a million times etc. I ask if we have it biopsied, he says no need to. I then go to yet ANOTHER ENT and he sticks this hose up my nose and down my throat, and says he sees nothing. Just by chance I was leaving for the Mayo Clinic in Rochester, MN for a non-related health issue I have had for 8 years. While I was at the Mayo for my check-up, I had the Maxoficial/Oral Surgeon doctor look at me. He said he was not concerned. I am due to go back there on June 25th to July 8 for some further testing.

In the meantime, My maxoficial Doctor out here where I live says they make a light and a special dye that can help show abnormal cells in mouth? Does anyone know anything about this by chance? He said he wanted to do this instead of the oral biopsy since I am leaving for the Mayo clinic in a week. He is afraid to do any type of surgery and he said the Mayo can do this. That I should insist on the Doctor at the Mayo to do it?

The lump I am feeling is located in the retromolar trigone section of my mouth. My ear pain, head pressure is un-bearable. I sometimes just want to cry all day and all night because of the pain.

Any thoughts please? Comments?

Thank you for allowing me to vent.

Vent away, Jenn. This is a great place to do that because everyone understands completely.

When I had a red spot in the retromolar trigone region, the dentist said to forget it. So I did. Some months later is was an ugly tumor that required surgery, radiation, and chemo.

So be persistent. Not all health professionals are as knowledgeable as they should be about oral cancer.

I believe the procedure about which you are inquiring is Vizilite. If you use the search function, I am sure you will find many references to this, or Google that term to find the company website.

Please let us know how you are doing. It sounds like you are a strong advocate for yourself, which is wonderful. Just keep pushing for an answer, one way or the other.

We all know how scared you feel, but never forget that there are many, many of use here who have faced the beast down.

Jenn,

I am a dentist in Langhorne, PA. I have the VELscope light in my office, which is actually better than the light and the dye for checking areas that are suspicious. Up until Feb. of this year, we did use the ViziLite, which is what the surgeon was referring to.

Please send me an email if you would like to come in and get checked. Not sure where you are in NJ, but it can't be too far.

Jerry

Welcome Jenn

I believe you are referring to a velescope. (Spelling?) This does not detect cancer in general. I will look up a couple of threads on it to send you.

I sent a copy of this post to a dentist. He will respond shortly.

I personally would DEMAND A BIOPSY.

For that many Doctors to not be concerned leaves me speechless. Especially with your symptoms. What do they say is causing your symptoms?

I know you are scared. Do not assume you have cancer. With that many doctors not concerned they may be correct. But they all could be wrong also.

If you like, there is a topic titled "Missed or miss diagnosis" by "Joanna" in the forum "Activism".

I see you have no e-mail. I will look up some threads and PM them to you.

I am sure many will respond to your post shortly.

Do Not Panic. It is not cancer until a biopsy says so.

Vent away, thats what this forum is for. Keep asking any questions you may have.

Wishing You Negative Results.

PeteyB

PS: Boy that Dr. Wilck is fast!

Petey,

You keep me on the ball with your PM's. I would have been here later tonight if it were not for you.

I hope that Jenn gets back here soon and contacts me.

Jerry

Thanks everyone for responding and the advice.

I have no clue how to "PM" a person on here or even add an email address. Maybe someone can possibly help a scared, un-savy woman with computer lingo?LOL..I have no idea how to even set up a profile.

On a serious note here I am trying to prepare myself for the worse. I am going with my "woman" instinct and I honestly feel something in my body that just doesn't belong? Does that sound totally nuts or what? I am usually in the gym 5x a week, 2 hours each time, and I honestly think I could be a poster child for an ADHD adult! My energy level 6 months ago was sky high and now I feel like a 80 year old woman who belongs in a rocking chair. I guess I no longer feel like an ADHD adult but rather an exhausted human being.

Joanna? What type of surgery did you have? Did you have massive head pressure and ear pain? Where did the cancer spread to?

Petey they have no explanation, even the MAYO Maxo Doc said he sees nothing hence the reason I am going back out there on June 25th and I will insist on this biopsy. Will that hurt?

Jerry, I spoke with my Oral/Maxo Dr here in Jersey ( I am in Princeton) and I see him on Thursday June 21st. He then said I can take the result and pictures out to the Mayo on June 25th. The Mayo wants no biopsy done before I get out there because they do not want me to travel on a plane stiched up. So I have a feeling biopsy will be done when I get there with the results of my visit here with my oral/maxo Doc.

One last question? Wouldnt this tumor or whatever the hell it is growing in my mouth show up on a test? I mean I have had cat, MRI, and even a pet scan. The MRI showed something but because of the fillings I have in my mouth, the pictures were not as clear as they wanted. How about blood work? Would that show something?

Thanks

Jenn

Hello Jen,
Our dentist just this past year started doing the test you menioned with the dye and light. It's a mouth wash you swoosh around for a minute and then they look around your mouth with this special light. I believe it just shows abnormal cells which would then cause them to immediately send you to the Dr's. It was actually our dentist who sent my husband Kyle to a Dr. after noticing the lump in his tongue. He probably bought my husband many years of life by catching his cancer early! He's got 3 days left of rad/chemo. I would not stress out however, it could be anything. Good luck. Tammy (Kyle 51's wife)

Hello Jenn.........Try this.

TO READ AN INCOMMING PM;

I also sent you a test

To answer your question to me, Jenn, I had a visible tumor in the back of my mouth, and a very enlarged lymph node. The surgeons removed the tumor, did a modified radical neck dissection. When I healed, I had 37 rad treatments and concurrent chemo. That was five years ago and I feel great. And no, I did not have head pressure or ear pain.

I very sincerely hope you do not have cancer, but if you do, know that it is survivable. The place where you are now is the MOST scary. Once you know what ails you, one way or the other, then you can plan and things will begin to fall into place. You are up in the air now, but it won't last forever. Take deep breaths, and know we are here to help.

Jenn,

You are about 20 minutes from my office. If you would like to contact me by email my address is [email protected] The offer is still open for the VELscope exam (no charge, of course).

I see you are heading out on Thursday and I am in the office Tuesday afternoon and evening and all day Wed.. It just takes a few minutes to have it done. I am leaving for the weekend in an hour or I would have offered to see you today or tomorrow. I am off on Monday, but could definately arrange something sometime that day if you want. I will be checking my email during the weekend, but not the forum.

I am glad that you are getting the biopsy soon. This will give you the answer and this is the best way to know for sure what is going on.

I'm sure you will be hearing from Joanne soon who lives in Princeton and is one of the members here. Her husband Jack is an OC survivor and Joanne is very knowledgeable.

Good luck and let me know what you want to do.

Jerry