I just got the results of my biopsy, after fighting for two month, with several dentists, including an oral surgeon, to get one. Results, Squamous Cell Carcinoma of the gum, with highly differentiated cells. I have an appointment on Friday with oral surgeon. Hoping to get a CAT Scan before I go. I'm taking my cousin, a nurse with me to the appointment. What can I expect? My whole mouth feels like it's on fire, Periodontist, who did the biopsy thinks it may be from stress.

Welcome to OCF, Suzie! Im very sorry you have a need for our site! We will help you get thru everything with info and support.

Im very glad you are taking along someone to your appointments. You are very lucky to have a nurse in your family!

I suggest reading both here and on the main OCF site to learn about your illness. An informed patient makes a stronger advocate! Ive included a couple links from the main OCF pages to help you better understand diagnosis and treatments.

If at all possible, try to get at the very least a second opinion at a comprehensive cancer center (CCC). These facilities are our countries top cancer treatment centers where they use a team based approach to developing your treatment plan. Just remember, surgeons cut and will recommend surgery. Once its gone it cant ever be put back to be the same. Radiation oncologists will say rads is the way to go so when you have all the professionals working together it makes everything so much easier.

You may want to start eating all your favorite foods now, desserts too. If you are on the slim side adding a few pounds would be a good idea as any OC treatments usually affect a patients eating.

Best wishes with your upcoming appointments!


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Thanks so much for responding. I was pretty sure that my biopsy was going to come back positive. Just somehow knew it, so I did some research ahead of time, and found a surgeon who is on my insurance and is known for using all the newest techniques. He uses a team approach as well. I looked at the closest well known cancer center, and they take my Medicare Advantage Plan. Apparently none of the big centers even take regular Medicare. Has anyone run into this problem? Since the biopsy, I have lost 8 pounds in 10 days, but that's really not a problem. I could stand to lose 50 more pounds, easily. I'm just not hungry, a first for me. I'm interested in knowing about others with gingival cancer.

I just reread my post, and it should have read that the cancer center does not take my insurance.

Suzie,

I just would like to welcome you to this circle of friends. Do you have plans for seeing an oncologist? Does your oral surgeon have extensive experience dealing with cancer patients, or will a referral be made? These are a couple of questions I would ask.

It looks like to me you are one who is persistent and can advocate for herself. This is great because it means you can keep on top of things through treatment and that you will get the care you need.

Hang in there, you will be able to get through it.

Thanks! The doctor I'm seeing specializes surgery and treatment of SCC. I will learn more on Friday, but he does use a team, and I'm thinking that an oncologist will be part of the team. I hope I get most of my questions answered on Friday, but I know that I will probably have even more questions after the appointment.

I have had my CAT Scan on Thursday and saw the surgeon on Friday. My SCC tumor is a T1. I will have surgery next week. If it all goes as planned, I will lose three or four teeth and the bone immediately below them, but hopefully not any more of the jaw. He will rebuild my gum from tissue from my wrist. I will get a titanium rod put in the remaining jaw to strengthen it. Otherwise, he said that it might be easily broken. He will do the neck dissection to hopefully find that I won't need any radiation. I'm very frightened that even a week might make the difference in a T1 and T2 tumor. I have an appointment with a prostodontist, apparently the only one in my entire metropolitan area, on Tuesday. I was wondering about other's experiences with replacement teeth, dentures or implants.

Given there is some possibility that you might need radiation, make sure you get a thorough dental check-up and have any cavities dealt with. Find out too if your dentist will fit you with fluoride trays. This is important as tooth extraction and tooth decay are things which can happen post radiation and it is going to be problematic. I hope you get to read this before tomorrow.

Thanks! I will ask the dentist about that tomorrow. My surgeon wanted me to have the appointment with this dentist, as soon as possible, so they made the appointment for me. Apparently he specializes in oral cancer patients.

I saw the prosthodontist this morning, and I was impressed. He told me so much about the surgery and how it will affect my mouth and teeth. He is part of the team with my oral surgeon. He has given me exercises to do to help with opening my mouth wider after surgery, something he said is often difficult. We won't know what kind of replacement teeth I will be able to use until after surgery, but from this day forward, he will be my primary dentist. He was on the phone with my surgeon while I was there, so they could coordinate my treatment. My surgery is scheduled for Wednesday, October 5. I was supposed to be sitting in a Lionel Richie Concert in Las Vegas that day. Plans change, don't they?

Hi Suzie,
I have a similar diagnosis as yours, but mine began in the upper jaw. I started this journey 6 years ago with my first surgery removing teeth and gum in the upper right side. It's good you have a prosthodontist already, as I did, because they can have a temporary prosthesis ready to use right after surgery. Your situation is different, being it is the lower jaw and a little more complicated by the movement, but it sounds like you have an experienced team. Like the others who have responded, I am wondering why you have just seen an oral surgeon and not an oncologist? I did not have radiation the first surgery, but when the cancer returned 2 years later, I did. Some people respond well to just surgery, but you will need close monitoring as it can come back without warning. I have had multiple prostheses made following each surgery, and am currently having a new one constructed. Let me know what kind of questions you have and I'm happy to try to answer them. If you have good insurance, you should find that most of it is covered (because it is medical, not dental), but you will probably have to be persistent as they generally deny it at first. I see your surgery is this Wednesday. I will be praying for your quick recovery and will check back here to see if you've written an update. Best wishes!

Thanks Karen, I'm sitting up right now, not going to go to bed because I will have to leave for the hospital at 3:30 am, and I know I won't get any sleep. Surgery is early. I guess my biggest concern is not knowing what he will find when he starts to remove tissue and bone. Or if he will find any lymph nodes that are positive. It will probably be well into next week before I will post again. Did you have radiation? I think that scares me almost more than the surgery.

HI Suzie,
I've been praying for you today and hope the surgery has gone well. I know you won't see this for awhile, but I'll answer your question. Yes, I've had radiation twice. The first surgery they didn't feel it was necessary as the margins were clear and no sign of involvement in the lymph nodes. Two years later, the cancer had returned and I had to have additional surgery on the alveolar ridge, followed by 6 weeks of radiation. It wasn't fun, but I made it through and returned to work (special education teacher). A lot has happened since then, but the main thing for you is to recover from your surgery and see what the report reveals. I hope you will return here as there are many knowledgeable people who have been through this that have a lot of wisdom. But listen to your doctors and don't be afraid to get a second opinion as it is very important you feel confident that you are getting the best treatment. Best wishes!