Well, I saw the doctor today and at first he had me pretty scared. Talking about removing teeth, bone and reconstruction and that it could be Cancer and all. He sent me for a CT Scan of my head and neck. He was reading the results and said the neck came back clean and so did my teeth. The one exception was underneath a bridge I have. He said the bridge made the scan somewhat unreadable on the scan. I have to go to the dentist to have the brige broken off but oh well for now. He said it could be a tumor but also could be some bone left over from the tooth extraction. He thinks it is all Dysplasia and I am scheduled for Surgery on Friday to remove it all and he will send it of for biopsy after the surgery. He said the bone looks good so there is no need to remove any teeth or bone. I will be on soft foods for two weeks but after that I should be clear. I am just terrified of being put to sleep. I guess because I cannot control it.I want to thank you all for your advice. The doctor I went to see is awesome. He had a proactive attitude and set everything up for today and surgery for Friday. Even when the nurse told him he did not have room for me for Surgery on Friday, he told her to make room. I know that there have been some unfavorable opinions about Kaiser, including mine, but it could have taken days to weeks to get the scans and see the necessary people to get the Surgery done. This doctor is awesome and I told him I would try and find a way to rate him or something like that. I guess I will find out for sure on Friday.

Your doctor sounds just wonderful! My son's doctor regularly "made room" for patients when it was needed and it was so appreciated. I know what you mean about being put to sleep but I'll bet if you tell your doctor about this, he could put your mind at ease. There might be something he could give you to help you relax. When I had a colonoscopy a few years back I had the same feeling about being put to sleep but it went so well and whatever they gave me just before really did put me at ease. Hope everything goes just perfect for you on Friday!

I hope I am doing this right. I am new to this forum however my husband is a esophageal cancer survivor of 28 years. His epiglottis was removed at that time and he has had recurring pneumonias throughout the years. As he has aged they have become more frequent and now he was diagnosed with a virulent bacteria called pseudomonas,causing his latest pneumonia, which is resistant to antibiotics. It has been a struggle but he has gotten through this but now has a PEG to give nutrition through his stomach. He is depressed that he will never again taste food again. He has failed his swallow tests 3 times and the PEG must be permanent. Any suggestions on how we can deal with change of life experience?

I'm glad everything went well and I hope you're not hurting too much from your surgery.

Pamela, I was about to say try starting a "New Topic", but you already did!

Well I had my surgery on Friday. He removed a bunch of gum tissue that was sent off for a biopsy and two teeth. He said there is more that needs to be done. I have another appointment this Thursday for the results of the biopsy and discuss what to do next. My mouth hurts a little and is swollen but I guess that is to be expected after removal of teeth. I did not know that dysplasia could invade the bone but I guess it can so the teeth were removed instead of having it turn into something else. Thank you for your kind words.

Glad to see everything went well and u are home recovering hope to hear the results soon

Glad your surgery is over and wishing you the best possible news on Thurs.

Well, my doctor got a preliminary result on the biopsy. Margins clear except for one that they said was reacting. Bone not involved. Beginning of appointment was pretty much doom and gloom as the lump he removed was cancerous and than he got the call from the lab. Bone not being involved was a big plus. Said it was just the tissue. Said he is waiting for the final diagnosis to determine if the small spot that is possibly left can be treated with radiation or surgery. I stated I wanted the surgery instead of radiation. A small area of tissue and maybe a tooth may need to be removed if this one margin is not clear. What is one more. Doctor says it appears that he got most of it if not all of it. He also said to thank my dentist for catching this early. Thank you for listening.

Hey pamela, Its nice to see you here. As far as how this works, I think your supose t start your own post in the "introduce yourself" forum or under "general"forum, that way you will recieve the attention to your questions that you are looking for. I can't help you with the peg questions but alot of people here can.

Wendy

Sorry Everyone for not writing sooner. Life has been going so fast. Work, school and the family has just been taking up all of my time and I guess i did not want to admit what I had. My three month appointment coming has been a reminder. I have begun to sort of worry again. Its funny when I was told I had oral cancer I knew I would be okay. My wife got mad because she said i was not being serious enough.

I do not know if I updated this board but my final diagnosis is as follows:
GINGIVA, LEFT PALATAL, BIOPSY:
1. KERATINIZING SQUAMOUS CELL CARCINOMA, WELL DIFFERENTIATED
2. TUMOR SIZE: 1.5 CM IN GREATEST DIMENSION
3. MARGINS OF RESECTION:
a. PERIPHERAL AND DEEP MARGINS: UNINVOLVED BY CARCINOMA
b. ALVEOLAR BONE MARGINS (PERIPHERAL AND DEEP):
i. UNINVOLVED BY CARCINOMA
ii. BONE SECTIONS SHOW FIBROSIS AND
DEGENERATIVE CHANGES
4. LYMPHOVASCULAR SPACE INVASION: NOT IDENTIFIED
5. EXTRACTED TEETH, FOR IDENTIFICATION ONLY

I guess this means that my doctor pretty much got everything with the surgery and I am on three month visits for a while. The only questions that I thought about are what is keratinizing mean? I have read about keratinizing and non keratinizing. What is the difference? I know well differentiated is somewhat good because it resembles normal cells, but I could not find what keratinizing was. I don't know what stage it was but based on what i could find, I would guess an early stage. I guess I can ask my doctor in a couple of weeks but it would not matter. I just have to take better care of myself. My doctor also does not know why I got it as i do not fall under any of the risk factors. He thinks it is either hereditary or from advanced gum disease. Thank you for all of your time.

Im glad that everything has turned out for the best and you have fully recovered. Its very good that the cancer did not get into your jawbone, that would have been a much bigger surgery. Im sorry but I do not know what the term keratinizing means. Best of luck with your continued good health.

I am glad that this was caught early and something was done to take care of it. Sounds like your dr is on top of things which is real good. I am not sure of the keratinizing as I don't remember seeing that on my results. I was also low on the risk factors. In dealing with things as time has gone on we believe it is something in my genes. Keep the positive attitude, it will take you far. I recommend keeping an eye on things in your mouth in the future and if you ever notice anything get it checked out. That is how I caught my recurrence after two yrs. We all have to be vigilent as this stuff is sneaky and can be peristant.

Thank you ChristineB and BrandyK. I appreciate both of your posts. I guess I am just getting a little anxious for my three month appointment coming up next week. I appreciate the time you took to post. If you do not mind me asking, how did you know that it came back? Did something just show up on one of your scans?

We all get nervous when it comes time for our check ups. Its good that we see our doctors on a regular basis. They know what is normal looking and what isnt.

The first time I had a recurrence I had a tiny canker sore which looked almost exactly like the first time. It was even in almost the same spot inside my cheek. The results were not a surprise since it was so similar to my original tumor. My surprise was that I had a clear PET scan about 2 months before the recurrence.

About a year later, I had a problem with a very painful bone spur sticking out of my gum. I thought it was just a fragment leftover from having my teeth removed. While I was having it taken care of, my physician's assistant told me there was a spot that didnt look very good. He asked if I wanted to do a biopsy right then or wait for 2 weeks and see if it goes away. I told him do it immediately, I even skipped the novocaine. I was in shock when it came back that I had cancer again. This time I felt great, not sick at all.

Best of luck with your check up.

For me it was different. Nothing showed up on the scans and I kind of had two recurrences. The first one was a bump/sore under my prosthetic. I thought that my prosthetic was rubbing on a some tissue and just needed an adjustment. A biopsy was done and of course it came back positive. They did laser surgery. A month or so after that I found a couple more spots in the back of my mouth along the upper teeth and my doctor did a biopsy on one and it came back positive. It is then they decided to move forward with chemo and radiation.

The interesting thing about my PET scan is that the area that hurt the most and was the main tumor spot was not the spot that was lighting up on the scan. All of my stuff was found through biopsies.

I can understand being anxious as well as most people on here can. Try not to let it take over your thoughts. Try to keep your mind off of it as we can't let it win. Will be keeping you in my prayers.

Thank you both very much. You both are an inspiration. I try not to let it bother me and most of the time i do not. Sometimes it gets to me. I will however mention that i am good at checking my mouth out. I think I check once a day before i go to bed. No one can really tell me why I got it, but it has to be either hereditary or from not taking care of my teeth. I also just read that the mercury fillings are not as safe as they once though so maybe I will have those removed. The hereditary part I cannot control as I have never met my birth family. But I can control the taking care of my mouth. Thank you for your information.

You are very welcome! I am very open about everything that I have gone through and if it helps someone else that is awesome as this stuff SUCKS. I have heard the same about mercury fillings but those can easily be replaced by your dentist with the new ones.

Kudos for checking your mouth regularly. Keep that up and keep up on taking care of your mouth.

ok I see no one has told you about the keratinizing. I kind of remember learning about it in anatomy class. Squamous cells are in many different places in the body. There is some that is keratinized and some that is non keratinized. It's nothing to worry about.
found on a website - keratin is part of a family of fibrous protein and is usually found in the outer layer of skin, hair and nails. So nothing to worry about.
Glad you don't have to go through radiation or more invasive surgery!! Hoping it stays that way.
I was one of the lucky ones that they don't know why I got mine either. They say hereditary, but who really knows.
Hoping you don't have to deal with this anymore, other then clear scans and no further treatment!!

Thank you very much for the information. i was just wondering about what it meant. My doctor did not tell me much other than he got it all and to come back in three months for a checkup, which is tomorrow. I am a little anxious but I guess that is normal. Thank you everyone for all of your words and I hope you all have/had a great holiday and a an even better new year.

That's a really good report. The tumor is small and "well differentiated", which means it remains in one tissue type, probably lymph tissue (like the tonsils).

Poorly differentiated tumors will invade any and all tissue types, including muscle, bone, etc. Those types of tumors tend to be very aggressive and, hence, more difficult to treat.

Thank you Gary. I really do appreciate your information. It makes the car ride to my doctor for my three month appointment more bearable and not so worrisome. In fact I appreciate all the words and kindness from everyone on here. Thank you so much. I hope that someday I can repay everyones kindness.

Well I went to the doctor and he said my mouth looked good but he had a CT scan done. He called this morning and asked me to come in again this Thursday because of the results. I am so freaking out right now. I was okay but I am so scared now. I am awaiting to hear from him as to what was on the scan.

Who wouldn't be scared after receiving a phone call like that!! I can tell you to 'try not to worry' but I know that isn't going to happen. I will however tell you to keep busy, the time will pass, and consider it good news that he didn't say something like "I need to see you immediately in my office".

Keep us posted. Thursday will come before you know it.

Donna

Thank you Donna. It is people like you that I really like coming to this site. It really helps me put things in more of perspective. I figure it is about the lymph nodes in my neck. The scan three months ago he said he found a couple of small and enlarged lymph nodes. I imagine that is what it is about. Thank you very much for the information.

Many doctors won't dicuss scan reports over the phone. Often they require further dialog between the reading radiologist and the ENT or H&N surgeon. The scan is only a small part of the total diagnostic package anyway. The gold standard is actually the physical exam with the ENT (aka direct visualization).

None of my early MRI's (the entire first year) were very good but eventually all of the suspicious areas dissapeared. So they're probably being overly cautious and this is typical early on.

Try not to freak out.

Thank you Gary. My doctor did eventually call and told me that my scan picked up an enlarged lymph node which he was also able to feel. Instead of playing the wait and see game he wanted to do a needle biopsy. I went in for the needle biopsy and he had a hard time finding the lymph node again and when he did find it he said it was noticeably smaller which he said was a good sign. I guess I will know for sure in a couple of days. Thank you for your advice and info.

Was/is there any pain associated with this node?

Were/are you on any antibiotics?

Yes there was some pain with it. When the doctor touched as well as myself, it was tender. It wasn't like really bad pain but i could feel it. I am not on any antibiotics right now.

Typically there is no pain associated with a cancerous node, just swelling. A painful node can however be indicative of an infection which an antibiotic could solve. Discuss this with your doctor.

Thank you David for all of your advice and information. The biopsy came back negative on the node. I am just awaiting for the final CT scan results. My oral surgeon did not see anything else but he wants to make sure. After that I get to start planning for the reconstruction surgery. Thank you and I haope you have a awesome new year.

Well, the node biopsy came back negative and the Scan only showed the one node so I guess that came back okay. I go back to the doctor today for another checkup and to start planning for bone reconstruction. I want to wait before having bone reconstruction. I don't know what to think anymore. We shall see I guess.

Awesome news!! Happy Dance (get that happy dance in before the bone reconstruction surgery!)

Good news.

Donna

Hi. Your type of cancer seems to be similar to what they've told me about mine. I'm going to MD Anderson for a segmental mandibulectomy, neck dissection, and have been told I have squamous cell carcinoma of the right lower alveolar ridge, stage T4N0M0 (however this is presurgery so this staging will probably change). the CT scan was clear and I'm scheduled for surgery June 15 (just a few days). I'm 57 years old and ready to get going with this process so I can get back to my real life. LOL Do you have any info or advice for me.

Great news groc!!!
Hi again Debra... Try not to worry things will fall into place. Surgery isn't easy but you will get through ir. Try not to be afraid to ask questions of your dr. You need to know all reasons why... Take care!!