This is my first time posting!I am a 62 year old male who has never smoked or chewed or drank in his life.. My denist saw a small pale patch on my cheek and said probably nothing but sent me to OralS who biopsyed it! It came back Mild Epithelial Dysplasia! he said my regular dentist would monitor every 6 months and dont worry. My regular dentist said he sent pathology report to the James Cancer Hospital and they said just to watch for changes and monitor every 4 months for changes! I am scared! Dentist was very compassionate and said this is what he would do! Any thoughts?
Thanks
I know my results could have been a lot worse but I am still scared

Welcome to The Oral Cancer Foundation. You are very fortunate to have been given this diagnosis! The good news is that not all dysplasia turns into oral cancer. Here is a very similar thread with some responses from members who have had a similar diagnosis. Several of them have had it turn into oral cancer. Try not to be scared, if it would turn into something serious, you are in the right place for help. The members who join and it doesnt turn into OC, dont need the forum so they havent chimed in. Sometimes the dysplasia is surgically removed but it can return.

Try not to worry. Just keep an eye on it and if it changes then go back to the oral surgeon or seek out an ENT who specializes in oral cancer. For now, try to relax, you really are very very lucky!!!!

Dysplasia thread

I also want to welcome you to OCF Kroman . As you can see by my signature epithelial dysplasia is something I have had for a few years now.
It is not cancer but the specialists are still keeping an eye on me every few months. Here is another recent thread you might like to read which I also posted to. You may also want to check the links that are in Charm2017 post.
As Christine says try to not worry as it is not cancer but as it can turn in to cancer you need to make sure you keep up with regular checks.
Gabriele

Epithelial Dysplasia

Thank You!
I just don't want to be saying should have, could have, would have down the road! I know Iam very lucky! I know I have to trust someone. I have been with my regular dentist for over 30 years and he says leave it alone at this time.
I almost feel ashamed to even be here because so many here on the board are in real battles but I am glad I found you guys.
Thanks again and I am not going anywhere!

Welcome here, Kroman!

Don't worry about being among people who have it worse, the fact is that no matter how bad things are for you, they are YOUR things and the relevant fact is that they worry YOU!

And don't worry about your situation being more fortunate than any one else's situation. No matter how bad one has it, someone else has it much worse.

We're here to help you, not to judge or criticize

I go back to see Oral Surg. the first of May for him to just check biopsy healing. I will try and go more educated with some questions this time. Mostly why it wait and watch instead of just taking out! I am sure they have their reasons but i just didnt ask why at the time.

Well I look at the thing in my mouth about 1000 times a day and I swear it looks a little different each time.
I know it's probably still healing from the biopsy but it looks a little whiter. I see my internal Medicine doc weds for other issues so i think I will ask his opinion about the wait and see advice of the oral surgeon and dentist. Who do you trust?

An ENT... really - I would push to see if you can get the results of your biopsy sooner. I would call them and ask. Then once you know whether its Cancer (hopefully not) or something else then you can make a move. Ultimately if it is cancer you do not want to wait. You want to see a top notch ENT with a lot of experience in Oral cancer, and you want to do it at a top rated CCC (cancer center) I would not ask an internal medicine person as they don't really have that area of expertise, and even an oral surgeon passes off a patient to an ENT when they get a positive biopsy. I would maybe as for a referral to an ENT now, and then if your biopsy is negative cancel it. This way you are ahead of the game time wise if you do get a cancer DX.

hugs. and good luck.

Sorry Cheryl, Maybe my post was a little confusing...
I did get results of Biopsy last week from Oral Surgeon and it was Mild Epithalial Dysplasia. He said no treatmeant needed and that my regular denist should keep and eye on it for changes. I talked to my regular denist and he said do nothing and we will keep eye on it.. I just feel a little un easy about doing nothing so i thought I would ask my regular doc if I should see a HEad and Neck doctor(is that same as an ENT??)
Everyone keeps telling me don't worry and just watch it. My internet search seem to be a mixed bag of wait and see and intervention..I just don't know
I am mean what are the risk involved in just removing it??? Why isn't that the first choice? What ever happen to early detection and doing something if it's just wait and see...
Is that because it's Mild Didplasia???

Kroman --

See my signature below: My husband's initial diagnosis of a leukoplakia (white patch) on his mobile tongue was dysplasia as well. As Brian Hill told me when I first asked here about dysplasia almost seven years ago (boldface added by me):
[quote=Brian Hill on 5-9-06]Dysplasia are those cells which are no longer normal, but they are not really malignant yet ... an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction... and having them removed or watched very regularly is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever.[/quote]
Most dysplasias do NOT turn malignant; my husband was one of the unlucky ones. He was referred to a local ENT for an excisional biopsy of the whole area because the pathology report of the oral surgeon's biopsy of a tiny area raised some concerns even though no cancer cells were found.

By the time of the excisional biopsy (a month after the oral surgeon's biopsy), his leukoplakia had indeed become malignant -- but it was caught at the very earliest stage possible, it was removed with clear margins, and it required no further treatment. He is regularly checked by his dentist and has been referred a time or two to the oral surgeon; fortunately, those referrals didn't result in discovering anything serious (or even vaguely concerning). He also has gotten regular checks by a cancer specialist ENT at Johns Hopkins, whom he saw as soon as cancer was officially diagnosed and who was the one who said no further treatment was necessary.

Both your oral surgeon and your dentist are telling you the right thing. You are very lucky to have such a proactive and observant dentist who obviously doesn't hesitate to refer you to have something suspicious checked out. Keep up with the regular checkups, and don't let worry overtake your life (easy to say, I know -- but it sounds like you are in very good hands). If you do choose to see an ENT, be sure to find one who is familiar with oral cancer (such as those at the James Cancer Center at Ohio State; if you go to this page and click on "Otolaryngology" under Search by Specialty, you'll see ENTs who list "General Otolaryngology" and "Cancer" or "Head and Neck Oncology" among their interests). That's the type of doctor you'd want to see, as he/she will know what to watch out for -- most "general" ENTs concentrate on such things as taking out tonsils and putting in ear tubes and see very few, if any, OC cases.

Thanks for the info I guess the bottom line is that I am scared and looking for absolutes of which there aren't any. Iam lucky and I thank God for my current situation.
I suppose I better get used to the fact that regardless my life has changed forever. I am glad Iam so glad I found this forum!!

Well unfortunately there are no absolutes... the truth is if you get a definitive cancer dx.. that becomes even more murky... since with cancer there are even less absolutes. ;o) You're always walking around wondering if you will have a recurrence even if you pass certain milestones. 2yr, 3yr, 5yr...

Another truth is that you or I or anyone else can be afflicted with cancer or a heart attack or stroke etc... at any given time. I may be 5 years out from radiation and get mowed down by a bus. All any of us have is NOW. Not to say we shouldn't plan for the future but live your life now and don't put off until tomorrow what you should do today...

That said... Get a referral to an ENT. See him or her if that will ease your mind. That way if things change, or begin to get worse, or you just want it monitored by someone who KNOWS CANCER - then you are already where you should be. Then be happy you've done all you can and live your life. Just be diligent and check it monthly and see the ENT once say every few months.

best of luck... ;o)

Thank You Cheryld
I just got home from my regular Doc and he has gave me a referal to an ENT so that is good. Dont have an appt yet.
Then by luck I saw where OSU The James Cancer hospital is having a free Head and Neck screening next Friday. I called and talked to an Onoclogy Nurse and she said this would be perfect if for nothing more than peace of mind but she said this will be a full screening with scope of voice box etc.
So I made an appointment for that. At least I am going to be able to say I tried to be pro active!

That sounds like a perfect solution!

Well I just got back from the "Free" Head and Neck clinic at Ohio State. I was screened by one of their Head and Neck Onoclogy Docs. I was so impressed at how much time he took with me at a free screening. He even took the time to look at my Biopsy report. He went in a lot of depth explaining the Mild Dysplasia etc. He also gave his opinion as to proper treatment at this point which was to watch it closely. He also said he would take me on as a new patient and see me in 3 months for another biopsy to look for changes.
He explained that trying to surgically remove a Mild Dysplasia at this point was not worth the risk to surrounding tissue and nerves. He said that sometimes its just not that obvious where the dysplasia starts and stops.
Anyway I feel better that now it has been 4 doctors that say watch it closely and also that I now have a contact at the James Cancer Hospital!
I still don't like it in there but you have to trust someone!

That sounds great. Now you have some peace about it at least.
Kathy

Glad to read that you have done all you can and now have the answer that makes you feel better and at peace.
I think I posted earlier that like you I am still being closely monitored for dysplasia which also gives me a degree of calmness.
Gabriele

That's awesome!! He's a keeper. Best of luck!

That's one caring doctor! Keep well.

You Know He was very caring and informative and glad that I now have an experts opinion. I am glad I now have some peace of mine so I thought. Why after all this do I still have this "feeling" that something just isn't right?
Is it normal to feel this way??
Seems like I look at my mouth 25 times a day..
Ever time I swallow I wonder..
Do you ever stop wonderin and just what ever is will be??
I appreciate all your thoughts. Thanks

It takes alot of creative thinking to overcome feelings of concern. This has been a very traumatic time for you. Luckily it has a happy ending.... you dont have cancer. Im so happy for you that you dont have anything that needs immediate attention. Try to limit the times you check your mouth and get that down to once or twice a week. It will take some adapting but you will be able to go on with your life and put this behind you. If you must worry, only allow yourself like 5 minutes then "change the channel" and think about more positive things. It takes practice but you can change the way you think by repeating this every time you begin to worry about your health. Im not saying to ignore whats going on, you still need to be your own best advocate. Pay attention for any changes and follow up in 3 months but go out and live your life.

Good luck!!!

You know as soon as I posted that last post I wanted to take it back! I feel so stupid feeling sorry for myself! You have been such and encouragement to me. You have been through so much yet you have taken the time for me. Thank You so very much and I am going to start TODAY to be positive and take your advice.

Relax!!! Here at OCF we understand all those feelings very well. Its ok to come here and rant about things. We understand! Its perfectly normal to be concerned about your situation.

Hope you have a wonderful day today and begin to worry a little less.

Kroman - it's okay to feel sorry for yourself. However... This is a reality everyone of us faces - though it sometimes takes cancer or a life threatening disease to make one see it... NO ONE is guaranteed a tomorrow. Sometimes it's hard to focus on the good, or even the day to day when you have a fear hanging over your head. But the reality is, I may have cancer, have had it, or have a precancerous condition, I may face a recurrence - but putting all that aside I may also step off a curb and get mowed down by a garbage truck. Live for now, plan for your future but don't waste important time on may or may not bes...sure every once in a while you may have a thought that paralyses you with fear, give it its due attention, if its a health issue do what you can to take care of it, be diligent but not obsessive, and then move on. Otherwise you spend so much time focusing on the fear of dying or being sick that you never really live.

Ditto! so correct thinking. I add that every hour spent dwelling on the "might be" is one hour lost forever doing something bringing joy and happiness to oneself and those around you. Pretty simple choice when viewed with these two options.

As you say, tomorrow may be your last day and who wants to say they spent their last day worrying about some maybe situation or condition.

You guys are absolutley right! Thanks! I needed to hear that.
Starting right now I am going to do better.

Yesterday was my recheck of the biopsy on my cheek. The Oral Surgeon says its healing nicely. I told him I could feel small bump and that spot was just a little sensitive (not much) to certain foods. He said I was feeling scar tissue at stitches site and sensitivity was normal as site might take another month to heal completely. Anyway says everything looks good and have dentist check regularly for changes.
I have a question..I have read that Mild Dysplasia sometime reverses itself..If so would that Pale patch in mouth actually start to go away??? Has anyone experienced this??
I am doing much better about thinking positive!!!

I truly think anything is possible. It depends on what is causing the dysplasia. If you are eating or exposing your mouth to something that is an irritant this can cause tissue change. Stop it, and often over time the body will repair itself.

Anyone else? maybe someone else here will give an opinion. ;o)

Great to hear you are doing better with thinking positive!!! That really does help you to feel better about everything.

I dont know if mild dysplasia will reverse itself or not. It sounds like it could be possible. I kinda think that if it wasnt possible then why would the surgeons remove it if it always comes back anyway. Seems logical to me that it can be eliminated. Hope so anyway!!!