| Joined: Feb 2012 Posts: 7 Member | OP Member Joined: Feb 2012 Posts: 7 | 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
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | 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
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2012 Posts: 7 Member | OP Member Joined: Feb 2012 Posts: 7 | 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2012 Posts: 7 Member | OP Member Joined: Feb 2012 Posts: 7 | 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 | | | | Joined: Feb 2012 Posts: 7 Member | OP Member Joined: Feb 2012 Posts: 7 | 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!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!
Last edited by ChristineB; 02-28-2012 04:34 PM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | 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!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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