Hi everyone,

I have been lurking about these forums for weeks now, and I finally figured out how to get registered.

I fully recognize that no one here can diagnose anything, I was just hoping to give you a little of my recent background and see if anyone else had similar experiences.

Before I start, let me just say that I am sorry that all of you are going through this, and I commend you for staying strong and sticking together.

Probably about 7 months ago I woke up with a painful ulcer in my mouth. I've never had canker sores or anything like that, however because the ulcer is right where my back molar rubs and its on the side I always sleep on, I figured my tooth was just cutting into my skin.

Unfortunately, that ulcer is still there today. It appears to be about the same size as it has always been and it doesn't always hurt, but it does often. In the time since its appearance more symptoms have popped up.

I've had small dark blue or black blister type thingees that pop up and disappear within a couple days. I've started to have pain on both sides of my mouth, my neck, my shoulders and the back of my head. I feel pressure quite often on my face and neck, sometimes the swelling gets so bad I feel like I am being strangled. These symptoms typically aren't present in the morning but get worse throughout the day, especially if I go to work (which is very physical).

I've been to the ER 3-4 times in the past month because of sudden lightheadedness and some trouble breathing. Each time they tell me something different. I've had several chest x-rays and all show my lungs are fine (aside from the smoking damage I've done to them).

Last week I finally could afford to go to an ENT. The visit was hurried along and he seemed to instantly dismiss my concerns. He referred me to a dentist to get the offending tooth fixed and to physical therapy. WHAT?!

He palpatated my head and neck and says I have no swollen lymph nodes, however I do have masses in the same place on both sides of my neck, under my jaws, and behind my ears. When I palpate them they are quite tender. I also reached into my mouth and noticed I have these same kind of "masses" inside my cheeks. They are also tender and back toward my jaw.

I realize I've never paid much attention to my mouth before so I don't know what its supposed to feel like, but I know it isn't supposed to hurt. I have a sore throat most of the time and my teeth are sore at times.

I don't really know what I expect to hear from any of you, but at this point I am concerned that I waited too long and I potentially have a cancer that is progressed. I am sick often, whether it is being lightheaded, losing appetite at times, nauseous, or having trouble breathing.

I'm praying at this point that it is a dental infection, as I do have several cavities I couldn't afford to have filled in 2008 when they were discovered.

I'm just at a loss for what to do. I have no insurance, though I am trying to get on state insurance now that I have my birth certificate in hand. Either way I'm afraid that it is something terrible, and even worse, that I am too late.

I've missed so much work lately being sick, its going to be hard to even keep my job.

Was anyone else out there in significant pain before their cancer was discovered? Is it possible that I have cancer on both sides of my face and neck?

Hopefully the dentist will at least admit to feeling what I'm feeling tomorrow so I can try and find out what is wrong with me. BTW I am 32, female, and a long time smoker. I want to quit so badly but this stress lately is making it even harder.

Thanks a lot for listening and any experiences or insight that you might share.

Penny T

Hi Penny, I�m almost your age. It�s hard to be young and into something like that. I was diagnosed with tongue cancer, T1N0M0. I think it�s really important right now that you can find a doctor that you can trust, a real good one. Don�t know where you like but I�ve made my best efforts, including spending money that I shouldn�t (my savings) to pay for a treatment that I hope it�s definitive.

Since our places seems to be different, about the pain I just had pain one week before surgery, afterbiopsy when everybody touched my tongue (almost a party).

Hope you get diagnosed soon and comeback here to tell that�s nothing! Have you been into antibiotics?

Best wishes! Keep calm and carry on!

Hi, Penny
Welcome to our forum. It sounds like you've got a lot of stress going on in your life right now. I want to wait hear what the dentist has to say before I comment. It could be that taking care of dental infection will put you in good order fairly quickly. Be sure to ask for an oral cancer screening.

If you have a university with a dental school nearby, you may be able to get future problems attended to at low cost at the student clinic if you don't have dental insurance.

Keep breathing and let us know how the dental visit goes!

Thank you for your responses. It is weird, but sometimes even knowing that someone is listening can have a calming effect, and it is much appreciated.

I have taken several rounds of anti-biotics in the last year or so. I had two infections on my ear lobe in a six month period. The first time it happened I noticed swelling behind that ear and down my jaw. I freaked and went to the ER for anti-biotics and everything cleared up. Then six months later it returned exactly the same. This time anti-biotics didn't clear up the swelling in the jaw, and then it appeared on the other side. Shortly after that the ulcer appeared in my mouth. At first I thought it was related to the infection, then I thought it was the tooth rubbing. Now I'm wetting myself wondering what is going on.

I just want to feel better, but I haven't been able to get one of the 15 doctors I've been to in the past year to take me seriously. Most just disapprove of my smoking and dismiss me as a hypochondriac. I'm really hoping the dentist appointment tomorrow yeilds some results!

If i can ask you something I�d just ask to give up smoking. I know it�s hard (I never smoke myself but my father and friends does). Even if it�s nothing serious will help you a lot from now on. It�s also a way to feel better...

The ER doctors seems to be completely out of focus. I went to 2 of them, one almost laugh at me when I mentioned Oral Cancer. Please try to find a specialist...

:*

Hi Penny, welcome to OCF! I hope you do not really need our help, that whats going on turns out to be nothing. First of all let me tell you I understand about being stressed and unable to quit smoking right now. What if its the cigarettes that are causing your mouth issues? Take away the irritant and give your mouth a chance to heal. I know its easier said than done but I was a smoker, so I know how it is. When I found out I had cancer I took those darn cigs and threw them out the window as I drove down the turnpike towards my feeding tube consultation. As I realized that it was the cigs and my own stupidity that made me sick, it made me angry. I quit cold turkey that day and have never looked back. I was NOT about to give cancer any more help to kill me. If you could see what I look like after going thru oral cancer 3 times and losing my left jaw, you would quit smoking. Try checking out the TRUTH.com's Unsweetened truth campaign and you will see what cigarettes did to me. Im not trying to give you a hard time for smoking, I just dont want to see anyone else suffer like I did due to tobacco which is an option weather you use it or not.

Now, as far as the sores go, usually cancerous tumors are not painful. So that is in your favor. Try to find an ENT who specializes in treating oral cancer patients. Some ENT's mainly do tubes in kids ears. If they give you a thorough exam and see things that look like it could be a problem they will advise to have a biopsy done. This will tell you exactly what you are dealing with. The rule of thumb is if a sore has been in your mouth for over 2 weeks and hasnt gone away its time to get it checked out. With all the money you will save from not smoking, you will be able to pay the ENT's fee. If (and that is a huge IF), it would be something serious then you will want to get yourself into a cancer center. Even though you say you feel it may be too late, it shouldnt be. There are all kinds of things that can go wrong and pop up in a person's mouth at any given time. Some are pre-cancerous, some are no big deal and others are cancerous. Only a doctor doing a biopsy will be able to tell you for certain whats going on. Sounds to me like some irritation, rubbing from your teeth and maybe even an infection on top of it. But Im not a doctor. Here is a link with several pictures to check out. Some you would think are cancerous but when you click on them and then click on the button to see the diagnosis you will see things arent always what you think.
OCF Image Gallery

Best wishes!!!!!

Penny: take a deep breath. Remember that it's not cancer until a biopsy says so. Everything Christine says is right on the money, especially the part about oral cancer usually causing no pain (and about quitting smoking, but everyone here will tell you that). She's also right about getting yourself to a well-qualified cancer ENT. You don't say where in California you are, but there are lots of them around, certainly in the big cities.

It's easy to drive yourself crazy with worry, which may help to explain all the anxiety symptoms. Use us as a sounding board and a way to relieve stress. We're all here for you.

Now take another deep breath!

Sending good vibes your way.

Hi penny... Welcome sorry you have to be here !! Hopefully its nothing but i would have your mouth thoroughly checked out by an ENT who deals with oral cancer - as Christine said. Okay I'm going to kind of go against the grain here - and say my experience with oral cancer was similar to what you are describing - I'm not a smoker by the way but I too had a reddened area under my tongue next to a molar that was in fact painful. Moreso when I ate certain foods - but it hurt! And it was cancer. Maybe because it was on my tongue, or maybe because it was a mass growing inside my tongue but it did hurt. Most cancer is painless, but not all. I don't want to scare you and Christine is right again in that it could be an infection or something else but it's been there long enough that you need an answer and don't stop until you get one. On the plus side bilateral involvement is highly unusual, usually that's indicative of something else (along with many of the other symptoms...) I'm surprised that you have masses in your neck yet the ENT couldnt palpate them I would definitely see someone else. It isn't cancer til a biopsy says it is so try not to worry. But do push until you know the cause. I too thought my issue was molar related and it very well may have been in the beginning but 4 yrs and 2 biopsies later it was finally I diagnosed as cancer. Good luck and let us knw what happens... And I swear I'm not a Debbie downer, I just like to do the better safe than sorry thng!

Again, thanks so much for the replies. I know most of you have been through a lot and it means a lot that you give your time to help others through whatever journey they may be having.

Cheryl, I don't see you as being a Debbie downer. You are absolutely right that I should follow this through until I know what is going on one way or the other. I also appreciate you sharing your experience because as much as I don't want this to be cancer, I know there is a very real possibility it is. I remain hopeful that it is something else, preferably less dangerous, but I'm not running around with blinders on either.

As for the ENT palpitating my neck, I honestly don't know what lymph nodes are supposed to feel like. I have never had them swell when I was sick or had throat infections as a child or any of that. So this swelling in my neck and cheeks is extremely new to me. What I do know is that I can feel odd feeling masses under the skin in multiple locations in my cheeks, under my jaws and in my neck, but only when I fold the skin there which the ENT did not do. I'm guessing it makes it a little harder that I am carrying around some extra weight, but he wouldn't even take the time to feel what I was trying to show him.

In any event, I will let you all know what happens at the dentist tomorrow, and thank you again for your support. Until then I will try hard not to worry.

Well, I went just got back from the dentist. Unfortunately I do not have some horrible dental infection. Quite frankly I was hoping to find out that is what it was. In fact, I only have one cavity, while my previous dentist told me I had five.

With every other possibility that disappears, the fear that this could be cancer increases. The dentist said that the ulcer appears to be trauma-related, such as biting or rubbing on my cheek. He says that when people are stressed or tense they tend to do it without realizing it. I also feel that he was holding back some thoughts because I think it was fairly obvious that my anxiety level over this situation is high. He said that he was leaning towards monitoring the situation, but that if I wanted a referal to an oral surgeon he would definitely give me one.

I took the referal, though I'm not real interested in going to just any oral surgeon. I want to go to one who is not unwilling to discuss the posibility of cancer with me. I guess I have some looking around to do.

He did mention that the parotid (I think) glands are right where some of my areas of complaint are, including the ulcer. I don't know if that is good or bad at this point. All I know is I am tired of running around from doctor to doctor trying to find out why I feel so terrible. I can't get the thought out of my head that they aren't going to find out what is wrong with me until I have one foot in the grave.

I'm sorry to dump all of this on you guys, I know you have your own problems and have been through so much even after finally finding out what was wrong. I just don't have anyone to talk to about this. Without any kind of diagnosis my friends and family won't accept my concerns as valid either. I can understand why, but it sucks no less.

Thanks for listening and best wishes to all of you going through any of this.