| Joined: Apr 2013 Posts: 17 Member | OP Member Joined: Apr 2013 Posts: 17 | 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
DX:4/02/2013 Mild Dysplasia of Left Buccal Mucosa | | | | 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 | 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 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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | 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
Last edited by Gabe; 04-11-2013 07:11 PM.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Apr 2013 Posts: 17 Member | OP Member Joined: Apr 2013 Posts: 17 | 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!
DX:4/02/2013 Mild Dysplasia of Left Buccal Mucosa | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | 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
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Apr 2013 Posts: 17 Member | OP Member Joined: Apr 2013 Posts: 17 | 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.
DX:4/02/2013 Mild Dysplasia of Left Buccal Mucosa | | | | Joined: Apr 2013 Posts: 17 Member | OP Member Joined: Apr 2013 Posts: 17 | 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?
DX:4/02/2013 Mild Dysplasia of Left Buccal Mucosa | | | | 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 | 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.
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: Apr 2013 Posts: 17 Member | OP Member Joined: Apr 2013 Posts: 17 | 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???
DX:4/02/2013 Mild Dysplasia of Left Buccal Mucosa | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | 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.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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