Hello my name is Julie and I am looking for some kind of information. I was at my sedation dentistry appt on Thursday. Called my inlaws who picked me up from that appt Friday after work and explained that I needed to thank them for picking me up and I don't remember anything about Thursday. They asked me if I remembered talking to my dentist, nothing. So they told me that I have a yellow referral slip in my dental bag and proceeded to tell me that my dentist found 3 white lesions on the roof of my mouth that she is very concerned about and has an appt for me with an oral surgeon. I need to call the surgeon Monday. Wow... this is just so caught of guard. I did know about the one because it has been there for a few months now and I can feel it with my tongue, I just thought it was an irritated taste bud, never did look at it and notice the two other small white lesions next to it that I cannot feel. Can anyone tell me what will happen when I go to the oral surgeon for this appt? I just cannot believe this is all scheduled and I don't remember any of it.

any friendly help is so so appreciated.

Hi Julie - biopsy is likely the next step. Small nearly painless cut to gather a small tissue sample to be analyzed by the lab. Best of luck to you.
mark

Thank you Mark,
What is the typical length of time that these biopsy results come back? Or does the oral Surgeon view them onsite? Does the lab send you, the oral surgeon or my dentist the results?

Usually an oral surgeon will do an exam then consult on the initial visit. Sometimes a biopsy is done with sedation and that would be discussed. The second visit a biopsy would be done. The third visit would be aprox a week later to give the results and any further instructions. This is what I experienced with my oral surgeon. It could vary slightly with different doctors. A biopsy 90% of the time will take 1 week for the results. I would recommend sending results to also your family doc just so that there is a good set of records there. Best of luck with this.

Thank you Christine! It will be interesting to see if I do not pass out walking in. I have such such dental phobia from horrible childhood dental experiences I don't think I will make it through. In fact I think I would like it better if I did just pass out. Thank you.

just so you know, u don't have tastebuds on the roof of ur mouth, . but its a good thing to have an appointment set up, better to be safe then sorry.
They will either set up a scan, try some different treatments first, or biopsy. If they biopsy, they sometimes will give you an option, but othertimes, they will just tell you how they will do it. I would let them know right away about ur dental phobia and let them know that you have sedation dentistry done and that will probably help them, and they will more then likely sedate or knock you out to do a biopsy if they need to.
Biopsy results can be a week to 2 weeks or more. I just had my first post treatment biopsies done on november 9th, and i got preliminary results that day that were negative, but haven't received the final results/pathology yet, and it's been almost 2 weeks. They will always tell you your results of biopsy/scans what not, and they will send them to the referring doctor, one who set up scan or performed biopsy. If you want ur dentish or general doc to have them, you will have to request they receive results or bring them a copy yourself.

Hoping this all is negative for you, if not, you have a good bunch of people here that will help you through this!!

bethers0808
Thankyou! I know it was one of those... moments. That's the same thing my husband told me. HA! I went to the oral surgeon appt. Two weeks ago. I think my sedation dentist gave him a heads up on my fear because after viewing the area he advised we remove it with laser and send it in for biopsy that day. He asked me if I wanted gas and that opened up the response for me to tell him myself. He also found out that sedation and gas does not affect me at the dentist like it should. 20 min of gas and still shakin in my boots he proceeded. Actually he was very good, the procedure wasn't as bad as I thought it would be. The swallowing and soft foods were pretty unforgiving for about a week but by today, my two week appt it is better. Today I saw him again, he told me the day he removed it he thought it was a pappilloma. Great I was thrilled. Today he tells me he was wrong. I tried to understand what he was telling me but it just went over the top both times he explained it. He used terms and words that I cannot even remember. All I know is that the cells were abnormal in the mocousous membrane, the abnormal cells condition was super long like 4 words the first word started with an I the second a d can't remember the rest. They believe it was confined to the top layer membrane and if it goes deeper than it turns into cancer. Does this sound wrong or did I misinterpret this? This doesn't make any sense to me. So he said we need to watch it to be sure it does not grow back and that he got it all. Appts every 3 months for the next year. He believes he got it all this time and he did laser a dime size deep circle/ball from the soft pallate of the roof of my mouth. Told me to watch it and that mostly this condition is caused from smoking. He showed me the removal of the lump and the arm coming from it. I am going to have them send the records to my MD and have her interpret it for me at my cardiology appt on the 15th. It's my own fault for not writing it down and asking more questions.....

Happy Monday!
Ok now I guess I can talk a little more intelligent after calling back and getting everything written down for me. I am wondering with this good news should a person be more proactive or go with the every 3 month oral surgeon checkup to monitor that spot?
Anyone had this same diagnosis?
Severe Epithelia hyper Keratosis & severe hyper plasia of the midline area soft and hard pallate. Features of severe epithelia dysplasia. Oral surgeon wants to monitor every months. Is this common, I was also curious is it normal for him to not check for other possible spots and to just focus on the dental referral spot?
Thank you.

Any advise is so much appreciate.

hperkeratosis and hyperplasia are nothing to worry about. The potions that have dysplasia in them ( unidentified in your post) you need to ask a question about. Is it high or low grade dysplasia? Low grade only about 25% of the time ever turns to something worse ( like the big C), high grade you need to have removed, not watched. So more questions for the pathologist to answer for you...........

Thank you Brian. I sure will ask. They did remove it and want to watch the removal spot is what I was told. Do people normally talk directly to the pathologist? Or should the pathology report the oral surgeon gets back state this information to him and he just did not tell me that? My records are being transferred to my MD which I coincidentally had an appt setup with on the 15 of this month for some cardiac monitoring I have every 6 months. Will this be a question I can ask her and she will be able to tell me or do I need to go directly back to the OS for this info? Thank you for your input it is so so appreciated.

Normally the oral surgeon (or whatever doc preformed the test) will tell you the test results. The oral surgeon would be the best person to ask since they are able to answer any questions you may have about the results or if anything further needs to be done. If they are forwarding info to your family doc then they should also have the test results.

Every single doctor I see and test I go for I have forward their info to my family doctor. That way I have one place where all my medical records can be found. Since my first diagnosis with oral cancer til today, I have seen at least 10 different doctors for various things.

Best of luck with the results.

Thank you Christine. I so appreciate your input and too wish you the very best.

You should be able to ask your regular doctor since they will have the report that the OS sent them. The report will have all that information on it. I am one of the few on this site that have had cancer of the hard palate 9(it is more rare). The check ups every 3 months is alright. I would just be vigilant in keeping an eye on everything anyways. I found my recurrence that way. If you feel comfortable with this oral surgeon I would ask him about the other two spots. If they are something that is going to consume your mind I would talk with the oral surgeon and he can biopsy them as well to ease your mind.

I pray that this is the last for you and things are positive from here on out.

Thank you Brandy,
I am so sorry you had to go through what you did! Did you catch the re occurrence? How long was it after they removed your spot that it grew back? Did you notice the white spots coming back? My oral surgeon was so so vague and not willing to give much information up unless I keep asking each individual question. What exactly were you diagnosed with after the first biopsy?

As I say life happens. Yes, I caught the recurrence. It was right after my two yr check up and was in a different spot in my mouth than the first spot that diagnosed me. The spots that I noticed in my recurrence were more red if I remember right. They could have had some white but I think they were red. I was diagnosed with SCC with bone invasion of the hard palate.

If I was not getting the information I needed from a doctor that would not make me feel comfortable and I would try to see another one if possible. I know sometimes it is hard but if there is another oral surgeon or one that is referred to as a head and neck surgeon I would go see them. They usually have seen more and can give a little more information. I am VERY picky about my dr's.

You are very welcome. Anything I can do to help you get through this as with anyone else on here I will do. I was blessed with an awesome oral surgeon. Let me know if you have any other questions

When we are scared, our minds leave us sometimes. Do not get down on yourself for not asking the right questions, I usually think of them after I walk out of the office when my brain has had a chance to settle down a bit. I find it helpful to write my thoughts and questions down so I won't forget the second one after asking the first.

Brandy -
Thank you for your reply. Sorry the holidays have just been a whirl wind. I hope your holidays were wonderful!!! I decided that I was going to put all of this behind me because it was removed and it was consuming too much of my worries. In the meantime I had a checkup with my new MD (female doctor) sort of a meet and greet. I never really had an MD family doctor. When I did go I would see the local NP or my now retired cardio. So this prompted me to find one since I am getting older and these things are creeping up on me. (Things such as periodic slurring of sentences and headaches) So off she sends me to a neuro, She does some simple tests and sends me off next week for an MRI. I have no idea why, she said just to check head and neck for pinched nerves. but in the meantime I noticed the lump that was removed in the roof is back and it is much larger than when it was removed. I just had it removed the end of November. I have a check up in another month (that will be the 3 month check with the oral surgeon). Do you think it will be fine to wait for the checkup, it is only a month away?

Thank you - I will write my questions down next time. Wouldn't it be wonderful if after you see a doctor they mail you a summary a week later of what you discussed and the diagnoses? That would sure help me. I tend to freeze up and then I only hear a few things that they are telling me and don't think of other things to ask.

Thank you

Hi Julie: You've come to the right place. I am fairly new, too. I was first diagnosed with squamous cell carcinoma on 12/23 and am starting my treatment (radiation and chemo) today. (It took 5 weeks to find the primary tumor and set up treatment.) It's quite a journey. But remember even when you feel powerless and in pain, you are in command. You are the navigator of this journey. I wish you all the best and will share whatever information I have that might be useful to you. -Michelle

Julie, I would see your Ent or whoever your are supose to have a 3 month checkup with right away as soon as possible. Better to error on the side of caution.

Michelle Ann -
Thank you. I am so sorry to hear what you are going through! I hope your treatment went well for you today. 5 weeks to find it. What were your first signs to lead you to discover this? If you really do not wish to talk about it I surely understand and appreciate your input.

Prayers for you.

I called today and the girl who answered the phone asked me to hold - came back and told me since it is a lump it is probably scar tissue and that if it starts to look exactly like the last lesion (Which in my opinion also was a lump) to call back. Ok lump lesion I guess I didn't know what it first looked like until it was there for a few months before. Didn't leave me feeling very comfortable waiting until the 2nd week of March.

Julie,

You have to be your own advocate sometimes my dear and verbally put people in their place to get the answers or actions that you want.

I would call tomorrow, talk to the insensative dumbass again and tell them you want seen on the next available opening they have or you'll be seeing another medical professional. Tell her you haven't been trained to differentiate lumps from potentially cancerous lesions, that's the ENT's job and they best be on it ASAP.

If she gives you lip or any run around, start barkin, if that's not your cup of tea, I'll call for you and trust me nobody wants that.

Eric

Hi, Julie,

I agree with Eric. Be a squeaky wheel. Tell the girl answering the phone that YOU CANNOT WAIT and you need to get in ASAP.

Also, can you take someone with you to your appointments who can be a second set of ears? It is important for you to understand the information the DR. is giving you. It can all be very overwhelming. And write down all your questions and bring them with you. Make sure the Dr. sticks around to answer your questions. Many times when the Doc was halfway out the door I said, "Wait, I have more questions". He came back and answered every one of them.

All the best-
Anita

Thank you Eric and Anita -
I do hear you. It is up to me to speak up... I thought I did pretty good calling just to ask. I got a nice giggle from Eric's response - thank you. That is pretty much what I really wanted to say... When I grow up I would like to be able to speak up just like you. I will call them again tomorrow. What is the difference if they see me soon or in March.

Again thanks for the nudge, I will call.

Hope you called. Sometimes in our desire to put things behind us we put off doing what we should. If you are concerned - then you need to see the doctor. Simple as that. If they try to put you off - go see someone else. It`s your health at stake.

Thank you Cheryl. Best wishes to you on Feb 4th. I did try to call today, we are Wisconsin where all the nasty weather is hitting, businesses closed early. I will try again tomorrow.

Thanks and best of luck to you - we are supposed to get some snow too - but nothin compared to what's happening on your side of the border! Take care and good luck with the dr.

Julie...maybe there wouldn't be a huge difference if you waited till March physiologically...but the psychological benefits are what count. Anything to help peace of mind in my opinion is worth the push...and let's be real, these dicks work for you so don't let them forget that. I hate the attitude that somehow they are doing YOU a favor for the hard earned $ they are charging you.

I called again today and they were finally open. The lady I talked to this time was very good compared to the last lady. I was really impressed when she asked me if I could go to one of their other locations in another city on Monday as the OS would be at that location. AND if I was running late from my other appt to just call and they would fit me in. Wow what a difference from the first person. She just told me to take my antibiotics like usual before coming in case he wants to remove it again I can get it done Monday. I am SO happy.

Hi Julie: I haven't been on the site in a while. I started my first week of treatment (chemo x 1 and radiation x 5). The chemo brought me down hard, but I do feel a little better today. One week down and six to go, but not all weeks will have chemo, only two more. I was first diagnosed on 12/23 with SSC after a surgical biopsy on a lymph node. After that, I had about three or four weeks of tests and biopsies to find the primary tumor, which they knew was HPV+. A final tonsillectomy with more biopsies revealed the primary tumor on the left tonsil, which I guess brought me to my official diagnosis. I am working with a small cancer hospital in western Massachusetts but did get a second opinion at Dana-Farber in Boston and was revealed that they agree with everything the local cancer center has recommended. Truth be told, my feeding tube is the worst of it, and I knew it would be, and I wish I had insisted on not getting it. I can be stubborn, and I would have been as stubborn with swallowing as I am with hating this feeding tube. But I am stuck with it now. The tube makes me feel sick in a way the cancer doesn't; strange, huh? Thanks for checking in. How are things with you, now that I babbled? LOL It's good to be back, though. -Michelle

Julie what you are experiencing is probably just scar tissue from the surgery you recently had. Sounds like your doctors are on top of this. You are so fortunate that you do not have cancer!!! Best wishes.

Thank you, I am very fortunate and hope to stay that way.

Hi Michelle -
I have been thinking about you and wondering how your treatments were going for you. I am glad to hear today you are feeling a little better. I simply cannot imagine what you and everyone else are going through. You are such a strong person. You have a cheerleader in Packerland that is routing for you.

I am doing fine, awaiting the Superbowl for excitement. Should be a great game.

Tomorrow MRI in the morning, oral surgeon at noon. Yippee I am so glad to get the second appt done.

Keep your chin up Michelle!!!!!

Enjoy the big game, Julie. This time of year I always wish I were a football fan, but alas, baseball and tennis are my games, which is another good reason to pray for summer's quick arrival. -Michelle

Hi Julie,

I was told that I mixed up my way through the threads and may have spoken out of line to you. I guess I didn't address what you wrote. Sorry if I went on too long about my case. I am not sure what I did to get lost in the thread, but I am still trying to manage this site.

Sorry for any inconvenience.

All the best,
Michelle

Michelle -
Please do not apologize for anything. I am not sure what out of line would be. I was really happy to hear from you and your treatment progress please I appreciated everything. I guess I didn't know there was an order either. No worries Michelle.

I wasn't a huge football fan until a couple years ago. Now my husband and son duct tape my mouth shut and tie my hands together oh..... twice this season just so they can a minute of quit ha! It was funny.

Wishing you the very best this week in treatment. Cheering for you. God Bless You.

Wendy just curious - why no radiation or chemo - trying to figure out what determining factors are... Thanks for your time and patience!