HI,

And thank you for your wisdom and experience:

Chgo
1) went to dentist > saw very small white lesion on side of tongue, said i might bite tongue at night, it might even have been there for years, but she sent me to peridontist to be safe >peri wanted to do brush biopsy to be safe.
2) Did research on BB and saw low efficacy. confronted Peri > he gave me pathosogisht at ORALDX who make BB, and said then get a incisional > gold standard. with a 95% efficacy - oral DX has not called back anyway.
Went to Fla to help my dad
Talked to My MD via phone she said to either do:

1) Watchful waiting. but oral cancer moves fast.

2) see an ENT. and get a combo first visit and biopsy and lab results.

Questions please:

1) it might be where i bite my tongue at night, and it hasn't changed.

2) A good ENT in central FLA that can do a exam lat biopsy and labs.

3) How much does this cost, as I have no dental ins so i have to pay cash.

4) also i speak on phone for living so how much hurt and not being able to talk will there be please.

Thank you so much for your valuable time

all constructive comments and wisdom appreciated.

Respectfully,

IZMAN

Izman,

Glad you found OCF my friend, sorry you had to. An Ear Nose and Throat Dr or ENT will be covered under medical insurance, not dental, you just need a referral from your Dr usually to get it paid for.

Only a biopsy will tell you for certain if you have cancer, so the only choice really to ease your mind is to ask for a referral and get it biopsied. Don't worry about the cost, the way I look at it is how much is your life worth to you? Probably more then what the appointment and lab work will cost I'm betting.

As far as what you do you for a living, take this one step at a time. Get it checked out and go from there, let's worry about staying alive first and "making a living" after.

Best of luck!

Eric

Look for an ENT who is familiar with oral cancer patients and biopsies. Some ENTs deal mainly with putting tubes in kids ears. Cost can vary greatly. Sorry, I dont know what this would run but dont let cost determine your fate. If you would have cancer then its not something to play with. Get yourself checked! As far as what you do for a living, of course its important but your health must take precedence over a job.

A biopsy can be done while awake with or without getting numbed. You can even be put to sleep to have this done. I prefer just getting it done without anything. The doc should only take a teeny tiny bit of tissue to get tested. Cant predict how much pain you will be in.

Good luck!

Hi there - welcome... Everyone's comments here are correct so I'll just suggest that you ge h biops. Be on th safe side. It may only hurt for a day or two and shouldn't impede your speech too much. Good luck and take care.

Thank you so much for all your generous advice! I really appreciate it! I am feeling such a mix of feelings and trying to practice selective denial. I am now in Florida
taking care of my Dad.

Exactly What kind of ENT should I look for? one that specializes in tongue biopsies?
if so how do i know that or know if they are any good? Also how do I know the labs are good?

Can you please tell me the right criteria to ask?

I don't even know the right questions to ask.

thank you for your valuable time and wisdom.

all constructive comments and wisdom welcome...

Respectfully,

Iz

HI there.... I would search out an ENT that deals primarily with Oral Cancers. Let them take a look. See if they want to biopsy it. Some can tell immediately whether it's cancer, but will confirm with biopsy. Call the local CCC and explain that you are from out of town - you have some concerns ask them if they could recommend a good ENT. Maybe they will be able to tell you someone. If the Dr. chooses not to do a biopsy ask why, what they think it is, and if the feel it should be monitored.

Also I know Connie here is from FL. she might be able to recommend a good ENT depending on where you are in FL.

Good luck...

Thank you so much!

I am in the winter haven lake wales area

What is CCC please?

also a friend mentioned this one. Anyone know anything about it?

this is the ent clinic in Lake Wales, but they have offices also in Winter Haven and
Sebring.

Barranco Clinic

302 W Central Ave
Lake Wales, FL33853
Neighborhood: Twin Lake Park

(863) 678-3808

Also how do i know if someone is good at lateral tongue biopsies
and has experience at looking what is on my tongue and telling what it is thanks!

Moffitt Cancer Center is not far over near Tampa. That is one of the countries top cancer centers. Here is a list to help you choose. Finding an ENT who is experienced with oral cancer patients is easy. Ask them. Look them up online. See if they are affiliated with a cancer center. I would call and say "Im looking for an ENT, what does Dr ______ specialize in? Does the doctor see more children or adults? Does he have any oral cancer patients? How many do you think the doctor diagnoses per year? Give the receptionist time to answer each question. Then do some research yourself online. Get this taken care of while you are there, dont put it off. Good luck!!!

****OCF Diagnosis info

****Cancer Centers


***** The above links are pages found on the main OCF site. It is full of many of the things you are asking questions about. You will find lots of helpful info there. Of course we will be happy to answer your questions too but this might be a good place to educate yourself about oral cancer and finding a doctor. Best wishes!

I agree with Christine. And her questions are excellent.

CCC refers to Comprehensive Cancer Center. Everything I've heard leads me to believe that Moffitt is top-quality, and it's probably less than a 2-hour drive from you.

Here's their info:

12902 Magnolia Drive, MCC-CEO
Tampa, Florida 33612-9497
Tel: (813) 615-4261
Fax: (813) 615-4258

Keep us posted and hang in there!

Dear Izman,

You mentioned that you do not have dental insurance, but this all should be covered by medical insurance if you have it. If you do not have either type of insurance, some hospitals have free-care programs for qualifying low-income households. Like many have said, don't let finances determine how you go about things. There are ways to make it work. Just do first things first and have an excisional biopsy for an accurate diagnosis.

My excisional biopsy was done by an oral surgeon to whom my dentist referred me. It was done under local anesthesia and I was given pain meds thereafter. Thankfully, it was done this way because it was very painful when the anesthetic wore off. The area required sutures. He took a specimen about the size of a garbanzo bean (chick pea) and sent it off to an independent lab that deals with oral specimens. The lab billed my medical insurance separately from the oral surgeon since they were independent doctors/pathologists.

When the diagnosis came back positive for squamous cell carcinoma of the lateral tongue, the oral surgeon called around to his contacts in the Boston hospitals to find out the best doctor in treating my diagnosis. They had set up an appointment for me the very next day. I am forever grateful to him for doing that legwork for me. In fact, he did it all the day before he had me come into the office to give me the bad news of a cancer diagnosis. So, I had everything in place right away and didn't have to wait. This is where going to an ENT/head & neck cancer oncologist at a CCC (comprehensive cancer center) would be ideal. Everything under one roof and runs like a well-oiled machine.

ConnieFL on this forum has had treatment at Moffitt and has been very happy with it. I would suggest looking her up on this forum should you have any questions.

Best wishes for good health,
Kerri

I want to thank you all so much, this info while over whelming is very helpful.
so it seems moffit is best in tampa, and the questions are wonderful
i really appreciate all the advice. it is so much info to try to get your head around...

how would i get ahold of connieFL on the forum please to ask her about moffit?

You can send her a personal message. Click on her name by a post and choose send a PM from the drop down. If I remember correctly. I haven't done it many times.

Izman,

If you go to Moffitt your in good hands. Call ASAP to make an appointment the snowbirds are here it might take time to get in. You want to make your appointment with ENT Cancer Dept. This is their number 813-745-8460.

What I've read you haven't had a biopsy if not get one soon. Take all your records to Moffitt plus the Disk from your CT/PET Scan. I had everything together when I went.

Look for a good ENT Surgeon who does biopsies in your area and ask him to do a CT/PET Scan. This way you'll have everything in your hand when you go to Moffitt. As far as I know you have to have all this done before going there unless they changed it.

They'll read everything and look at the DISK, they want to read the DISK themselves. You'll go from there with them.

It's a wonderful Cancer Center. I have Dr. Thomas McCaffrey his wife is also a Dr. there.

DavidCPA also goes there his cancer is different from mine.

Hope all goes well with you, keep us posted.

Connie

Connie and everyone thank you so much for the info!

What do you mean CT/Pet scan. right now i just have a very small white lesion on my tongue, the dentist sent me to a peri who wanted to do a brush biopsy. I am trying to decide between that and a incisional biopsy. Also I have no insurance so I have to pay cash.

My Ideal would be an experienced ENT that has seen dozens of these and knows what to look for and could look at what i have and tell me
1) its not an issue and could do watchful waiting or
2) lets biopsy that now and can do it then and well with good lab access.

That is my idea outcome. Am i asking dumb/ wrong questions or being naive ?

all constructive comments and wisdom welcome,

Respectfully,

Izman

You are NOT being naive! But do take the advice we give you seriously, we speak from experience. Please go back to page 1 of this thread and read the post I wrote to you on 2/28. I added links to help you. The diagnosis link will explain alot of info about biopsies. It tells you the difference between a brush biopsy and the incisional one.

A brush biopsy will only have to be redone if something turns up questionable. You are correct to get a regular incisional biopsy. An experienced ENT, oral surgeon or even a few dentists can do the biopsy.

Be proactive and be your own advocate!

You don't have Dental insurance but you do have health insurance that's the way I read it.

Go to an ENT Surgeon who does biopsies you want the incisonal one NOT the brush. You want a CT/PET Scan to see if cancer is in your lymphnodes (neck). This travels and it travels fast don't sit on it.

Then when you have everything back from the ENT and the labs and IF you do have cancer you have all your records in hand with you when you go to Moffitt. Moffitt will read them and go from there.

You don't need a Dentist to do this your Health Insurance will cover it when you go to an ENT.

Get this done soon!!! If I had known about this forum way back things would have been different with my cancer, I'm sure of it.I was jerked around from this Dr. and that Dr. until I heard about Moffitt Cancer Center.

Get to it..

Take care,
Connie