Thank you for all of your kind words. I truly felt like I had no place being in a sea of folks that really are much worse off than I am. But you all have really welcomed me and I appreciate the support so much.

Yes, it was my Dentist who caught this, after a bit of prodding by me. It is sort of a long story, but here goes:

Towards the end of April 2006 I had an irritation on my gum on the bottom right side. It didn't hurt, it more felt like I always had food stuck there. I had a 6 month dental check up already scheduled for May, so I decided to wait and ask about it then. They took a look and really didn't think much of it. I went home with a $17 bottle of mouthwash and the instructions to floss and rinse well each day. I did. It didn't really get any better, but didn't get any worse either, until this past fall. Towards the end of September/early October, I started having some pain in the area. The soreness is on both sides of the tooth, just at the gumline. Being a busy gal, I decided that I'd try to hold off until my November 6 month check-up. But then I changed my mind. I just had a funny feeling. I saw the Dentist who still wasn't really suspecting Cancer. He thought it looked more like trauma than anything else. He prescribed an antibiotic and instructed salt water rinses and to come back after the antibiotics were done so he could re-evaluate. When I went back, he was very concerned because it didn't respond to the antibiotics at all. He said that he hadn't seen a case in a long, long time, but he thought it was possible that it was cancer. He got me an appointment with an Oral Surgeon immediately following my visit with him. The Oral Surgeon took a biopsy, but told me that it was very unlikely that this was cancer. She told me that cancer didn't hurt. Since mine hurt, that was a good sign. She told me that getting cancer on your gum is also very rare, that's not where it usually shows up. I am a 37 year old female, she told me that it would be very unlikely for this cancer to strike someone like me. And it didn't look like cancer, she said. I went home and got on the internet, which was foolish because is caused me more worry. I saw a photo of some gum cancer and it looked exactly like what I have in my mouth. Exactly the same. I went back to OS to have her check that the biopsy site was healing okay. This was a week later. She didn't have the results yet. I explained to her that I had done a bit of research and I was convinced that it was Cancer. She told me "I'd almost bet my life that it isn't cancer, quit worrying." I left her office feeling a bit better, but I still couldn't shake the feeling. And then another week later I got a call to come in to discuss my results. I knew it was bad, but of course they wouldn't confirm that. I didn't have a sitter, so I told them that my tiny little kids would be coming. That's fine, they said. Thank God that at the last minute my neighbor volunteered to watch them. I can't imagine having them there with me while I heard that news. I am actually quite angry at the OS for poo-pooing my concerns. I know that it didn't affect my TX, because she got me hooked up with an awesome Surgeon at the Mayo clinic. But still, I have no trust in her whatsoever. I will NOT be seeing her again. If I need follow up care from someone closer to home, which the Mayo Doc said I would--I will not go to this OS. I am sure that she is a fine Doc, but I don't trust her. My hubby thinks I am being to hard on her, but I really think that she should have been more honest with me. She could have at least agreed that it was possible it was cancer.

And for those of you wondering, I am a former smoker. I quit a few years back. I am not much of a drinker but I do like to have a beer after mowing the lawn, times like that. In fact, up until a few months ago, I hadn't had even one sip for 5 years. I was either pregnant or nursing for 5 years straight. I figure if I can survive that, cancer should be a piece of cake, right? They tell me now that I should never, ever drink again. Ever? Of course I won't, if it means that I can live. But it's weird to think that I won't be able to ever have one beer again. Small price to pay to be able to see my kids grow up though. Now if they tell me that I have to stop the diet coke, I'll be in big trouble.

The Surgeon at Mayo told me that I have my Dentist to thank for getting me treated so quickly. If he had put it off or tried other things himself, there is no telling how much worse this could have ended up. But one thing that sticks in my mind is back at the May appointment where I first mentioned this. I had an oral cancer screening as part of the visit. I remember him saying "oral cancer, negative".

Thank you again for all of your support. It's nice to have people to lean on that know what it's like.

Good Night!

Amy

Amy, you are being to modest, it sounds like you have been thru a ton.I used to enjoy a beer myself watching my wife mow the lawn, haven't had one in about 9 yrs but still enjoy watching her mow the lawn.
Amy I can,t help but think of how many times where I have heard of stories like yours where you are assured that it's nothing only to turn up cancer. Most doctors are competent good people and I wonder the opposite,-- if they said they thought it was cancer and came back negative we would be angry for days of needless worrying. Why Don't they just say I don't know let's wait for the results.
Truly wishing you the best!
Mark D.

Mark,

Your message gave me a good laugh. Having a beer while watching your wife mow the lawn, that's funny stuff. Sounds like my hubby.

You are right about the opposite; I think if a Doc said "cancer" and then it wasn't, I'd have been upset about that too. In fact, when my Dentist said cancer I was so afraid. I started shaking like crazy. And then when I got to the OS and she reassured me, I was kind of angry with the Dentist for suggesting such a thing. I thought "how dare he say Cancer, when according to the OS, it so clearly is not Cancer?" I guess if I would have heard something in the middle, it would have been better for me. And the other thing was the length of time between biopsy and results. It was more than two weeks. I started to get the feeling that no news was good news. Certainly if I haven't heard anything yet, it isn't anything bad. Of course, everybody else reassures you that this is the case. I have a coworker that is a 2 time stomach cancer survivor. She told me that if it were cancer, I'd have heard in a couple of days. If they suspect cancer, she said, they put a rush on it. But my OS didn't suspect cancer. I guess it's truly water under the bridge now. It truly didn't affect my care. I am getting the help I need and that is the important part.

Thanks for your support. Oh, and for giving me my morning chuckle.

Have a great day!

Mark,

Your message gave me a good laugh. Having a beer while watching your wife mow the lawn, that's funny stuff. Sounds like my hubby.

You are right about the opposite; I think if a Doc said "cancer" and then it wasn't, I'd have been upset about that too. In fact, when my Dentist said cancer I was so afraid. I started shaking like crazy. And then when I got to the OS and she reassured me, I was kind of angry with the Dentist for suggesting such a thing. I thought "how dare he say Cancer, when according to the OS, it so clearly is not Cancer?" I guess if I would have heard something in the middle, it would have been better for me. And the other thing was the length of time between biopsy and results. It was more than two weeks. I started to get the feeling that no news was good news. Certainly if I haven't heard anything yet, it isn't anything bad. Of course, everybody else reassures you that this is the case. I have a coworker that is a 2 time stomach cancer survivor. She told me that if it were cancer, I'd have heard in a couple of days. If they suspect cancer, she said, they put a rush on it. But my OS didn't suspect cancer. I guess it's truly water under the bridge now. It truly didn't affect my care. I am getting the help I need and that is the important part.

Thanks for your support. Oh, and for giving me my morning chuckle.

Have a great day!

Hi, Amy. Your story sounds much like mine. My dentist overlooked my cancer, which began on my upper right gum, by the cheek. I complained of tenderness in that area, and I also complained of ear pain on that side, which is noted in his very brief notes. He noted "some pocketing." At the next visit, six months later, the lesion was still there, and he cauterized it!!! He still called it a periodontal problem, or an injury. I doubt that he even read his tiny little note from six months before. He did not have me return for him to check whether or not it improved. Then, two months later, when I returned because I noted that there was something not right on the inside of my gum, he scraped and cauterized it AGAIN, calling it ANUG (which used to be called "trench mouth" in the olden days.) Never did he instruct me to return for him to be sure that the lesion resolved, and never, even when it was obvious that this lesion had spread from the outside to the inside of my gum and onto the hard palate, did he recognize it as cancer. When I returned the following day, insisting to be seen, he sent me to the periodontist, who immediately recognized it and sent me to the oral surgeon, who took a biopsy. The dentist is clearly at fault for "failure to diagnose" and he certainly allowed my cancer to progress and necessitate a more extensive surgery. I have no idea yet whether this delay will cause me more problems, such as metastasis or recurrence. Needless to say, he will not be seeing me professionally again!

Dentists have a grave responsibility in the area of early recognition, and the public MUST be informed about the danger signs of oral cancer, and how they can take more responsibility for their own oral health. In my case....and in yours, Amy, ...we were doing what we thought we should.....getting regular check-ups with what we thought were well-trained dental practitioners.

I think that one very simple thing, at least in my case, that would have made a difference, is simply to have the patient return for a quick check to see if a lesion does or does not respond to treatment after several weeks. This would have saved me 8-9 months of allowing this cancer to continue to grow in my mouth. I know NOW that I should have checked it myself, but I was not told that there was any concern, nor was I instructed to check it. He simply said, "That should take care of it." It didn't!!

August,

Wow, your story and mine really are very alike. They mentioned ANUG to me also, but the hygenist pointed out that this would be the first case she'd seen where it was localized and not all over the mouth. The Dentist agreed. I am not holding too much against my Dentist here. Yeah, he gave me the "oral cancer negative" thing back in May. But once I came back, he promptly got me the care I needed. But I can't help but think that in May, this was still in pre-cancer stages. Maybe not, but you never know.

I am pretty new to all of this, so I don't know a whole lot about the different surgeries and such. Mine is on the lower jaw, but I am wondering if it is somewhat similar to your surgery? I am just wondering what to expect after surgery. I am having 3 teeth removed and part of my jaw. He doesn't think he'll have to take any nodes from my neck, but he'll decide that during the surgery. The PET Scan indicates that this has not spread from the gum, but he said that sometimes when he is doing the surgery, he sees more than what the scan shows, in which case, he'll remove some nodes. I am afraid about eating and talking, though he tells me that I shouldn't have a problem with these things. But I still can't help worrying about it. Did you have any issues with those things? How about your spirit after surgery? I am expecting to feel relieved that the spot is gone, but upset that so are some of my teeth. It's just teeth, I know. And they will reconstruct it later. But still it's giving me an uneasy feeling.

I can't wait to get to the surgery point. You know, it's very strange to be able to feel and look right at your cancer. I imagine that other kinds of cancers bring their own horrible stuff, but somehow, being able to look in the mirror and see the crap creeps me out. I have quit looking myself, but others ask to see it. Just last night, a coworker wanted to look. Um, I am not a sideshow.

I hope we can keep in contact. I love the messages that I have gotten from everyone. But it's nice to have someone that has had (sort of) the same thing as I. Also, I haven't seen any statistics, but according to my OS, cancer presenting itself on the gum is pretty rare. It seems so, because most of the internet stuff you find is geared towards other sites.

Have a good day.

Amy
I had the same surgery as you are going to have. back in June. I suspect mine was more extensive than yours will be since they removed about 40% of my jaw and rebuilt it with fibula. Also, I had a complete neck disection as well, along with tissue transplants from my arm.

That said, I woke up able to talk, and started eating within 4 days of surgery. Hang in there, and if you have any specific questions for me, please ask away
Wayne

So tell me, how long was your recovery. How soon did you feel good again. My Doc says 2-4 weeks, does that sound about right? Though yours was more extensive, it'd be nice to have something to compare it to.
months.

And how are you feeling now, 6 months later?


Amy

Amy,

Unfortunately, delayed diagnoses like yours happen all too often, which is why it's so important to continue to get the word out about early detection. I was told over and over again by my dentist and my PCP that the suspicious (and painful) area on my tongue was nothing serious and that it would likely resolve itself. When I insisted on seeing a specialist, I was referred to an oral pathologist at a major dental school who categorically told me that it couldn't possibly be cancer because it hurt and because as a non-smoker I didn't fit the oral cancer risk profile. I finally ended up getting to an oral surgeon who did recognize the seriousness of it, and quickly performed a biopsy, which led to the start of my treatment.

My surgery was somewhat different from yours, so I can't comment specifically on what your response might be. However, most of us here who have had surgery have found it much easier to deal with than radiation -- I know my tongue and neck were healing quite well within about 3 weeks after the surgery was done.

Keep us posted as you go along -- you'll continue to find lots of support here.

Cathy

Amy, I see that Wayne has had the exact same surgery as yours, but I am still willing to answer any questions that I can for you. I was pretty alone with my surgery, not knowing about this site and not knowing anyone else who had had such surgery, and I want you to have all the support that you can get.

My surgery was on the top. I lost five teeth, and the accompanying maxilla ( the upper jaw bone.) My four front natural teeth remain, as well as the rest of my teeth on the "good" side.

My surgery was different from yours in that the removal of the maxilla and oart if the adjacent hard palate left a communication between the mouth and the sinus cavity above it. Patients with this type of surgery must wear an obturator...like a retainer....like dentures....sort of.....It attatches to remaining teeth and has a 3-dimensional part that goes into the opening to seal it off so that the patient can speak and eat and drink. Without it, all of these functions are difficult or impossible.

One time I forgot that I had the appliance out of my mouth, and I answered the telephone. After mumbling some sort of greeting, I had to hang up, since I couldn't hold a conversation! I hurried to put my appliance in, and when the person called back, I answered, and they said, "The funniest thing just happened when I called your number......" I just played dumb!

anyway....your surgery will be different from mine. I dona' tknow if they will do some sort of reconstruction at the time of surgery or not. Maybe they will just put a plate or bar across ......You will want some help with your children for a couple of weeks. And yes, it is "only" three teeth and part of your bone, but it is an important loss to you, and you will feel that loss. You will grieve for it. Head and Neck surgery seems so personal, because your head...your face.....are how you present yourself to the world. It's hard to have a condition that affects how you look, and one that others can see at a glance. But you will come through that wondering, unhappy time, and you will realize that you are lucky......that you didn't lose a leg or an eye....or a hand.....and that your surgery will not keep you from doing the things that you love. You might even not have your face changed at all, but if there is a change, accept it as who you are and as your battle trophy and a sign that you have fought an enemy and won!

Ask any question that you wish.