I have read some of the posts here before joining up and this is my first post. I went to the dentist at the Dental School clinic on Thursday, January 22nd. I'm retired, on fixed income, and needed help getting my fixed bridge repaired. During the screening exam by a 3rd year dental student, supervised by her professor, a lesion was found under my tongue (on the ventral lateral surface of the tongue) which I had known nothing about. It was termed leukoplakia and I was referred to the Residents' Clinic of the teaching dental school here in Denver because students don't handle the "complex cases". Now I must wait for "my" Resident to call me. Apparently the cases are reviewed and portioned out, then the resident calls the patient in for formulating a plan of care. I'm 70 years old and my 49 year old daughter went with me to the appointment, thank goodness, because the shock of the discovery temporarily erased every other thought from my mind. Dear daughter took notes on her I-pad and stayed with me to discuss things after bringing me home. As soon as possible that evening, I naturally consulted Dr. Google and believe that my lesion should more appropriately be termed erythroleukoplakia, because it is mainly red with white patches or spots. In further explorations on the web since then, I found this site and am very glad I did. It's hard not to let the imagination run away and start speculating, but I am doing my best and will take it one step at a time till diagnosis of this lesion. Glad to find such level-headed folks posting on here and sharing the wisdom of experience. I will post as I am given information and a treatment plan.
Mia
Welcome to OCF, Mia. there have been several members with a similar diagnosis. From my understanding your condition does not necessarily turn into cancer. Hopefully yours will not change and it will be easily resolved.
Best wishes!
PS... Beware of
Dr Google. If someone puts in enough symptoms, even a 90 year old great-grandfather will show as being 9 months pregnant.
Just my own two cents, but I have had the standard white leukoplakia patch under my tongue for about 5 years now. They have done a biopsy every year and always come back negative for cancer. Even though I did end up with oral cancer, the original patch had nothing to do with it. I hope your findings come back clean and if anything, this will allow you to be able to examine your mouth carefully in the future which mine allowed me to. If i hadn't been so careful about lesions in my mouth, i may have let this cancer go far too long without being attended to.
Thanks for taking time to post your kind replies. My surprise and shock are because I am a "never" smoker and only drink toasts to the bride & groom at weddings. I went to the dentist to get my bridge repaired and this came out of the blue. I never felt anything different and never saw the lesion. But now it must be dealt with and we will see what it turns out to be.
Welcome to OCF, Mia. This is a great place to get accurate information and first hand experiences with oral cancers. Try to avoid the general searches, you are lucky to find this place; it is a rare oasis of truly helpful and useful information. Best of luck as you continue the visits.
Don
Glad you found this place, Mia - It is the best place to be for the latest in accurate information, plus the knowledge and compassion shared by many who have experienced what you are going through. Try not to check Dr. Google - it can be a crazy maker! What you seem to have may turn out to be nothing serious. As mentioned many times on this forum, the only way to tell for sure is with a biopsy. Keeping busy is good and you can use the "waiting" time to check out the main pages of this site, where you will find lots of info on diagnoses and different kinds of biopsies. It can also help you to formulate any questions you might have for your doctor or for anyone here. Hope your diagnosis brings you good news and whatever it is, you have lots of support from everyone here.
Welcome Mia,
This is a great site with wonderful, caring people! I know it's hard not to borrow trouble so hopefully you will get underway and have nothing but the best of news in a short time frame!
Hoping and Praying for the best for you!
[quote=Steve F.]Welcome Mia,
This is a great site with wonderful, caring people! I know it's hard not to borrow trouble so hopefully you will get underway and have nothing but the best of news in a short time frame! Hoping and Praying for the best for you! [/quote]
Thank you, Steve. Right now I am 4 days out from discovery and awaiting next appointment. Feeling numb and exhausted, something like an accident victim. We all need prayer here and I am returning your kindness/will pray for complete success re your newest challenge. With your attitude it's a sure thing!
Okay, here is my promised update. I got a call to go back in to the dental school Residents clinic. My appt. will be for 2:30 p.m. tomorrow, but he asked me to be there early, maybe 2:10 p.m., in case they can take me early. The resident will evaluate and assess the lesion. Based on what he sees, the plan would be to remove and/or biopsy the lesion. "Who" and "When" I assume will depend again on what he sees. I'm really glad they got me back in so soon. I will sleep better tonight, knowing that I am closer to finding out what is going on in there.
Good luck... I hope it's just a lesion!!! Let us know.
Thank you, Cheryld. I will.
[quote=Anne-Marie]Glad you found this place, Mia - It is the best place to be for the latest in accurate information, plus the knowledge and compassion shared by many who have experienced what you are going through. Try not to check Dr. Google - it can be a crazy maker! What you seem to have may turn out to be nothing serious. As mentioned many times on this forum, the only way to tell for sure is with a biopsy. Keeping busy is good and you can use the "waiting" time to check out the main pages of this site, where you will find lots of info on diagnoses and different kinds of biopsies. It can also help you to formulate any questions you might have for your doctor or for anyone here. Hope your diagnosis brings you good news and whatever it is, you have lots of support from everyone here. [/quote]
I'm so sorry, Anne-Marie, for not acknowledging your kind post. Thank you for the encouragement. And Christine, Jeff and Don, also. My mind is not working right today. I'm only able to think about my appointment this afternoon and try to prepare for it. But I'm not an ungrateful, rude person, really.
No biopsy today. We will monitor it closely for any further changes. Nothing yet says "Looks cancerous. Biopsy right now." Next appointment 02/13/15.
Whew! Feels like I dodged a bullet.
Mia, congrats on your good appointment. Not all leukoplakia will turn into cancer, but some will. I still suggest you be proactive and seek out an experienced ENT who specializes in treating oral cancer patients. Even experienced doctors cant tell just by looking if something is cancerous. They can only give an educated guess. By doing a biopsy, it would give a definitive answer if it is cancerous or not.
Here is more info about leukoplakia...
Leukoplakia info from main OCF pages More detailed info about Leukoplakia
[quote=ChristineB]Mia, congrats on your good appointment. Not all leukoplakia will turn into cancer, but some will. I still suggest you be proactive and seek out an experienced ENT who specializes in treating oral cancer patients. Even experienced doctors cant tell just by looking if something is cancerous. They can only give an educated guess. By doing a biopsy, it would give a definitive answer if it is cancerous or not.
Here is more info about leukoplakia...
Leukoplakia info from main OCF pages More detailed info about Leukoplakia [/quote]
Thank you ChristineB, for the information and for caring. I mentioned getting a second opinion to my dentist. He said "You can, it won't hurt my feelings." for what that's worth. I asked for a referral to an ENT and he said the University Dental School clinic does not refer to specific outside doctors, but I could find one on my own.
After reading these two sources you gave here, I am even more convinced I need a second opinion and a BIOPSY. My dentist said he thought there was no reason to "put me through" a biopsy, since in his opinion the lesion is not dangerous at this time. He would recommend and do one if there are changes of a certain type, like thickening or ulceration. That was about the gist of his opinion.
So I'll report back on my efforts to get a 2nd opinion at an ENT or oral surgeon. Thanks for the encouragement to take it seriously and not be put off, poo-pooed, and made to wait and see how it develops by the dentist.
Mia - Good for you for doing some research and being pro-active about getting the best health care for yourself! You are worth it! I just have two comments:
1) Regarding a referral to an ENT, I don't think you should feel obligated to go to the one your dentist recommends and since he did not recommend one, that's good because sometimes they work together and have the same ways of doing things and you could end up with the same diagnosis. You could ask your family doctor or any other specialist you know to recommend an ENT that specializes in treating Head and Neck Cancer patients. Then see if there is a web site for the particular hospital they are affiliated with and check the website for that doctor's education, research and experience treating Oral Cancer patients.
2) Re: "My dentist said he thought there was no reason to put me through a biopsy" - I don't know what he meant by that, because when my son had his biopsy with an Oral Surgeon, it was no big deal, and done right in his office. Also, the Oral surgeon referred my son to an ENT, and even made an appointment two weeks away, but by the time we got home, I was a basket case of worry, and couldn't bear the thought of waiting TWO weeks! That same day, my ex-daughter-in-law called the ENT for me, pretended to be still married to my son and got the appointment moved up from Friday to the following Monday! It doesn't hurt to ask for stuff. Especially where your health is concerned.
[quote=Anne-Marie]2) Re: "My dentist said he thought there was no reason to put me through a biopsy" - I don't know what he meant by that, because when my son had his biopsy with an Oral Surgeon, it was no big deal, and done right in his office. [/quote]
I agree. The mental anguish part of the biopsy is something you're already going through anyways, so it can't get much worse. Might as well get it checked and give yourself some peace of mind. The physical part was basically nothing. In my case, all the doctor did was take an instrument that looks like a cross between scissors, pliers and those silly eyelash curlers I remember seeing my aunt use back in the '70's. Doc got me to open my mouth wide, he took a little snip off the tongue, and plopped the little nub of flesh into a little jar with some formaldehyde. That was basically it. Didn't hurt. Bled for about 5 minutes, but he gave me a little roll of gauze.
The part that was more uncomfortable in my experience, was actually the nasal endoscope (where he sticks a camera-on-a-tube down your nose and checks to see if anything else goofy is going on. Of course if you were one of those silly kids who used to put a piece of cooked spaghetti down your nose and pull it back out through your mouth, this probably wouldn't bother you either. I however, was not one of those kids, and found the endoscope pretty uncomfortable.
Mia,
Good news so far, but yes, I would find someone for "Another Look." Keep us posted! Wishing you the Best!
Thanks for the continuing encouragement, everyone. I have an appointment back at Anschutz on 2/13 and will insist on another opinion/referral.
Great... better safe than sorry sometimes dependent on location and such it isn't picked up right away. Hugs.
All the Resident dentist at Anschutz dental school said 3 wks ago was we will watch it closely, come back in 3 weeks. I have developed red and yellow patches down my throat which are making me have an annoying throat-clearing hack. I don't have a cold or sinus trouble and no stuffy nose - just the throat problem. My tonsils were removed long ago, so it's not tonsilitis either. Just this sore throat where the tonsils used to be. NOW let them refuse to refer me to an ENT. Something is clearly going on. The leukoplakia is still there. My broken teeth have still not had one single thing done to them other than people looking and poking and then handing me off to someone else. They hurt, dad gum it! Give me the patience to not go postal on someone on Friday, when I go back to the dental school for my third appointment. Either do something or say you won't for goodness sake! Sorry. Pretty frustrated here.