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.

I was also sent to an oral surgeon. Thats where I had my biopsy done. Some oral surgeons will be very experienced with oral cancer patients while others concentrate more on implants and wisdom teeth extractions. Try to research the oral surgeon you have the referral for and hopefully they will be able to help you. Do NOT give up!!!! Something isnt right, you need to find out whats going on. Hang in there and stay away from those cigs!!!!

Penny,

Welcome to the forum, you've come to the right place for your questions. I hear you about going from one doctor to another. You need to see an Oral Surgeon.

I had a tumor growing on the side of my tongue it was painful, it started to bleed and grow under my tongue by the time I got to a Cancer Center.

Go to an Oral Surgeon asap find one who will take a biopsy. There is nothing to a biopsy, I'm being honest. I'm the biggest baby and afraid of needles, I close my eyes. He'll freeze it and scrap a little off to send to the lab. I had a couple of stitches and they dissolve.

Take care and Good Luck keep us posted.

Connie

Hi Penny,
You are going to have to advocate for yourself. I would be incredibly frustrated right now too. I'm so sorry you are going through this. Really, find an ENT who has OC experience. Everyone is right about that. I would not beat around the bush anymore. If you are concerned, pound the pavement until you have an answer.
When Kevin had oc he had one lymph node on the right side of his throat that was hard as a rock. It didn't move, smoosh or hurt at all. In his case he had had the oc on the base of his tongue for awhile and it had spread to the lymph nodes. (This node had been enlarged for quite awhile before he said anything.) One was huge, the rest were just enlarged. We were tossed around for 6 weeks before we finally got an MRI and then the biopsy, PET and surgical biopsy. By then he had major node involvement, but thank goodness it hadn't gone to his chest. If I hadn't gotten pushy, I know it would have been put off way longer because Kevin was not a smoker or drinker. None of his Dr's believed it could be cancer. It was HPV+, which is very common in BOT OC.
Anyway, all this to say...Be a pushy broad. It's YOUR life!!
Keep in touch with us.
Kathy

Do go see an oral surgeon. and ENT world be preferable - though one who specializes in oral cancer is the king you need. Feel free to vent here. Dentist if they are experienced and have seen oral cancer are a good starting point but you really need a good ENT. Did he say any thing else about your Parotids? They are behind where you described your ulcer as being, bu what he was saying may have a bearing in term o a possible glandular infection. Please don't wait too long to have your cheek checked ou I don't know if it's cancer but, probably not, but it will ease your mind to know whats up... Good luck!

Hi everyone,

Just got home from work and feeling terrible . I have decided to contact someone at Moore's Cancer Center in San Diego. My question is, do they do diagnosis at these Cancer Centers or are they only for treatment after diagnosis. I am just trying to figure out how to find someone with experience dealing with cancer so I can find out whether or not that is the issue.

I keep holding on to hope that this is merely some sort of infection. Unfortunately my recent blood tests don't support that theory. I don't know if you can have an infection with no reaction revealed in your blood count. Here's hoping.

Even the prospect of this is so devistating. It has been a really rough six years or so, and a few months ago I finally moved out to California. I have wanted to be here for ten years, and I finally am here and with the most amazing man in the world to boot. (No offense to the guys in here who thought THEY were the most amazing.) I am looking forward to a great future, and its hard not to think about how this will change things.

I am so sorry you are all going through this. I can't say that enough. It is down-right terrifying thinking you may have cancer, to actually have it and manage to keep your wits about you is impressive. I find you all impressive and inspirational and I hope that I handle myself as graciously no matter what the outcome.

If anyone knows the answer to my question about cancer centers and diagnosis, please let me know.

Thanks again

I wish I could answer definitively but Im Canadian - though I do get your love for CA I travel there annually its my vegan Mecca! I have heard people on the board say you can go directly to a cancer hospital but really just find out the number to the head and neck clinic and call. They can answer your question and likely book the appointment. Sometimes we walk around with blinders on. Because we don't really want to know or face something. There are times this is okay for a bit - but mostly and particularly with cancer it can be deadly. If nothing else the stress itself is unhealthy. If you do get a bad answer (a positive for cancer) the reality is you caught it and you can be treated. No one wants to face that, but once you know you can do something about it. But as long as you don't precious time is being wasted. Really, right now your in a state of paralysis, knowing will do one of two things - either let you act on it... Or let you get on with your life. It's terrifying, but you really do need to find out what is going on. Hugs!

Hi, Penny -
I am glad to see you will be contacting Moore's - the are an NCI Designated Center. Call them up and, as Cheryl suggests, and the feeling of paralysis will recede and you will have more control over what is going on.

Best wishes from a former California girl!

Again I thank you all for your responses, they have been very helpful. This is the last time I will bug you all before I get to an oral surgeon or ENT who can help me get a diagnosis.

I was reading through my medical journal, which I kept for a month or two back when all of my symptoms started, and I was taking pretty thorough notes. I mentioned a lump I felt on my throat. I had a GP look at it and she massaged it thoroughly and concluded I had a more pronounced adam's apple. I didn't see any reason to disagree at the time as I didn't know if it had always been there. This was around the time I found the mouth sore.

Anyhow, my point is that I am having more throat symptoms now, and I had forgotten I raised that concern previously. Tonight I feel as though someone has their hands wrapped around my neck. Additionally my face feels weird, like the skin on it is tingling at times.

I don't really know what my point is, I suppose it is that the more I think about all of this, the more I realize I should have pushed harder several months ago. I didn't know I needed to. I know everyone's motto here is that it isn't cancer until a biopsy says it is, but I'm coming to a point where it would literally have to be a combination of some pretty weird stuff to be anything else. Believe me, I've looked for other stuff, extensively.

At any rate, thanks for the kind wishes, advice, and warm thoughts. I will let you know when I know.

Don't beat yourself up over could haves and should haves - it serves no purpose. I should hav pushed my first ENT - too. I should have had him palpate my tongue further and suggested he go deeper when biopsying. Had I done that I would have lost less of my tongue. But I trusted he was an expert. not so much apparently - that's why im super diligent with my care now. Bottom line - you have an opportunity to deal with it now. I personally think its not cancer. The lesion may be - but based on the fact that you have many symptoms and bilateral involvement (it's kinda diffuse and all over) it sounds to me like something else - maybe some kind of systemic infection? Inflammation? Allergy? Lymph nodes do become involved but it often starts out in a particular area just under you chin and closer to your ear and usually on one side. If there are many nodes involved generally the primary cancer is quite large - not all the time (there is such a thing as an occult primary - not visible - or unknown)- but often. Have you been scoped? The dr takes a scope and goes through your nose or mouth and down your throat? You may have a lesion in your mouth but maybe - based on what your saying with the swallowing and strangling feeling (tightness) maybe you have a base of tongue tumor (HPV related) or a tonsilary cancer (also hpv related) with this type of cancer there can be more throat and neck symptomology. So have your dr scope you to see if you're clear. But honestly it sounds like something else. Try not to freak out sometimes the stress alone causes us to exhibit more symptoms. everyone is different there are certain things drs look for and things that we as a group know and see collectively, but nothing is definitive because not everyone is the norm... What I do know is that both physically or mentally you need an answer.

Make the appointment and good luck.

Penny,

I want to add when I went to Moffitt Cancer Center I told my surgeon I felt like something is stuck in my throat, I think I have throat cancer too. He assured me with all the CT Scans it's not throat cancer it's acid reflux and that's one of the symptoms. I started taking Nexium but that is so expensive I switched to Prilosec over the counter 40mg. That did the trick.

You might want to ask if you have acid reflux.

Take care,
Connie

Hi everyone,

I know I said I wouldn't post again until I had some answers, but getting them is proving difficult. I had what I thought was a break-through last week when I contacted an oral surgeon who does a lot of cancer screenings, but mostly deals with gum health. They did some leg work for me and recommended me to another oral surgeon with a lot more experience with cancer. They also contacted that oral surgeon and asked them what they thought I should do based on my financial situation and lack of insurance.

I was told basically to go to a specific urgent care clinic that is actually located in a hospital. The oral surgeon seemed to think that if they suspected oral cancer they would not let me out of there without at least running some tests. Then I could go to the surgeon for a biopsy and find out if what I fear is a reality. Unfortunately (I'm getting tired of having to say that word), they were wrong and another $100 that I really don't have to begin with was wasted. The only thing they did at urgent care was check my pulse/ox and blood pressure, and note that do in fact have a lesion and other masses around my mouth and jaw.

Everyone really made it sound like I could get some help and I got really hopeful about the situation, however I was simply greeted by another doctor who knew nothing about anything and had no interest in taking any responsibility for anything. He prescribed me yet another anti-biotic, diagnosed peritonitis or whatever that glandular infection is, and gave me some pain killers "to help you sleep". I could have sworn pain killers were for pain, but what the heck do I know? I am taking the anti-biotic, because why not try?

All I know is that I feel my health declining almost daily. My symptoms seem to shift regularly with regard to both location and symptom, but they are becoming more dramatic and frequent. Anytime I am feeling pain, which is neither constant nor intense, it is always in the same locations. Lately I've started to experience intense amounts of pressure in my head, my jaw, and my ears. Most of the time it is on both sides, but it moves around often. I sometimes feel as though my eyes are being forced from their sockets. Other times I have difficulty moving my jaw, or trouble swallowing, or the strangling feeling I mentioned before. The only time I am symptom free is the first hour I'm awake, and even then it isn't always. I am usually at the very least lightheaded or off balance. I feel pressure in the back of my neck often. I have started to get tingling and pressure in my forehead and numbness in my lips and near my ears.

I know everyone has suggested I relax and try not to think about it too much until I can get a diagnosis, but that is next to impossible with the constant slew of symptoms interfering with my ability to do much of anything.

To top it off, every time I try to discuss what I need to do with my mom, she starts stressing about money. "You want to spend all this money on doctors, but you don't know what's wrong. What if it isn't cancer? Then you've gone and put us more in to debt for nothing." I can't even express to you how sad that mentality is making me. She's literally burying her head in the sand it seems, unwilling to accept that I may really be in trouble and need immediate help. I think she thinks that as long as no one ever says it is cancer, nothing bad will happen. Meanwhile I get sicker and sicker and my hope dwindles with every passing day.

I'm trying unbelievably hard to stay positive, I don't know how you all manage. I have considered going to the emergency room and exaggerating my symptoms to force them to do some sort of scan. I hate to even think that way, but things are getting so bad that soon I won't be exaggerating if something doesn't happen. Today I've even had some issues with my vision going blurry.

I can't find any information out there about what starts to happen if an oral cancer is ignored until it is advanced in progression. I'm sure it is different for everyone, but it scares me that I can't find it.

I know I am getting ahead of myself without a diagnosis and all but I'm truly starting to worry that what is wrong with me may not be found until an autopsy is performed. I have never had any significant health or anxiety problems until now, and as you can all clearly see I am not dealing with it very well.

My rational mind is still somewhat at work. I am trying to find a co-signer for care credit so that I can get the oral consult and biopsy performed, but then what? I have been searching for good hospitals that may offer financial assistance or whatever, but haven't found much. I want so badly to be a strong fighter of whatever this is, but I am drained to my very core.

Thanks again for listening and offering advice. I understand if my posting is too depressing or dramatic and you wish to remove it or me from the forum. I am just so lost right now. Thanks again for everything.

Hi Penny, i really don't think you should wait! Cancer does not wait ans if it spread you'll get a poor prognosis. Tell this to your mother, try to teach stuff about cancer to her. Even if you are not with cancer.

If you ignore oral cancer you can gey metastasis, making things worse. Does not exist a univercity center that can threat you for free? Please keep us informed.

Best wishes

Penny I do completely understand where you are coming from. I know how hard it is to think you have a serious illness and feel like you arent being heard by anyone you go to for help. Symptoms for oral cancer do not usually come and go so thats a good sign.

You need to do yourself a HUGE favor and RELAX!!!!! I am not discounting your symptoms and do believe you think you really have something seriously wrong. I dont know if you do or not, this is over the internet and I am not a medical professional. I have just seen 4000 members join this forum after me and sadly the majority of them have fought long hard battles with oral cancer.

If you do have cancer then you need to get diagnosed and treated. Now I will be blunt with you. It is IMPERATIVE for your well being that you find yourself a qualified doctor who will give you a thorough exam and a biopsy if necessary. You need to get concrete evidence of a YES or NO. A biopsy will do this. It is not about money, you cant put a price tag on your health. By delaying to get diagnosed you could make it much harder to treat if it is cancer. I am a strong believer that a persons mind can play tricks on them and when a person dwells on problems and worries constantly, they have the capability to make themselves very ill. I am not saying this is the case with you. I am simply saying that you worrying will NOT help you one bit, it wont change any test results or help you figure your next move. All worrying will do is make you more upset. When people get upset they sometimes get paralyzed by fear and worry making them unable to think clearly and make important decisions or not take necessary actions. You need to get your head together and find yourself a qualified doctor who will listen to you and give you a biopsy. I dont know your area so Im sorry I cant refer you to anyone for help. If you dont have insurance and cant afford this then do something to get yourself help. There are programs the government runs which will help low income people who dont have insurance. Sitting around worrying and feeling sorry for yourself will not help. As an adult you need to help yourself. I hope you have quit smoking by now. It is a very expensive habit and all that money spent on cigarettes could be used for your biopsy. Cigarettes could be irritating your delicate oral membranes and causing all of this. Try rinsing your mouth several times per day with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. Swish this around for several seconds then spit it out, repeat at least 5 times per day. Don not use mouthwash that contains alcohol (most do).

I am NOT trying to give you a hard time. I really do care what happens to each and every person who comes here afraid and not knowing which way to turn. I dont wish any of this on my worst enemy. I hope you have nothing seriously wrong. I really hope with all my heart that you do not need to be here on a website for people with oral cancer. Please feel free to come here for help. We will continue to try to point you in the right direction.

Please relax and tomorrow get back to work finding some help.

Christine,

Thanks for responding. I was in a very emotional state earlier and have since calmed down some. I know I have to get help, and now, I am just trying to figure out how to do it and I feel like I just keep getting bounced around. I'm not trying to throw a pity party, you guys have your own concerns and worries and I definitely don't feel mine are any more important than anyone else's.

My panic is really just coming from the fear that I have that I am already too late. I know that I shouldn't jump to such dire conclusions, but I'm struggling with that.

I have been using the rinse you posted earlier, and appreciate the advice. I don't know if it will help or not but I will try anything. I have quit smoking, btw. Regardless of what is wrong with me, I certainly don't need to give my body any more reason to act up.

I agree that I need a concrete answer and that I need it now. Figuring out how to get that answer has been a different animal. I am working on several angles right now and am hoping I can get something done before next week is over. I don't care about the money, personally. I have never been big on material things. I just haven't had any money because I've had to miss so much work. I will find a way, it just isn't happening fast enough for my nerves.

As always thanks for the advice, I will get some rest and work hard this week to get an answer.

Hey again... okay as a parent I would never want to be faced with the what if of knowing my child's life could have been saved if only I'd listened - I get that money is important however - survival is moreso. To me as with Christine - I do think something is going on. Is it cancer? Well for the very same reasons Christine says (cancer is usually static - causes a host of symptoms - but generally they don't jump around.) I think probably not, but you do need to find out what's up. Do some research - find an awesome dr online - google - look for a head and neck ENT that deals with a lot of cancer patients - read reviews (I did this with mine - he was recommended as the top guy in his field - by another top ent -so I went with him, but I also googled him too. Once you have found someone, or sme two, call his office find out how much he / she charges. Sit down with you mother - explain you are terrified, explain why, make her come with you. So she can hear what the dr. Says. We've had several very young people here in this forum who have been diagnosed, and sometimes this cancer can be particularly agressive. Often because of age people blow you off particularly with this cancer because it's primarily an old man's cancer (heavy smokers heavy drinkers) but there's a mix of people here who are younger, female and have no precursors for it. So tell you mom, you life is more important The almighty buck and do some research, good luck!

Thanks Cheryl,

I hope I didn't give off the wrong impression about my mom. She is very caring and has always been wonderful, but she tends toward a mentality of "if I ignore it it will go away". She is the type that, when the tornado sirens are going off, will declare she is going upstairs to bed. I just don't think she wants to even consider that something like this may be going on.

That being said, I have scheduled a consult with a local oral surgeon. I've been talking to them off and on for the past week or so and while I don't have the money yet for the biopsy, I at least want to get things rolling ASAP. My appointment is Thursday morning, so I will probably pop on here and let you know how it went.

Thanks for the helpful advice!

Btw, my mom will be going with me to the consult.

Great news! Please let us know... And i hope your mum is right: it's going away!

Hi again!

I figured you all probably missed me so I better post an update. (I'm kidding by the way, I find it amusing to over-exaggerate my importance.)

Anyhow, my appointment with the oral surgeon is in 7 hours. I was able to find a co-signer for the care credit, so I can afford a biopsy if we decide to go ahead with it. I'm as happy as anyone who is about to get cut can be, just because there is some promise of discovering what is (or, god willing, isn't) wrong with me.

I think I mentioned before that I found a journal I had been keeping starting back in July when the ulcer in my mouth first appeared. I have copied and updated it with every symptom and timing I can remember, as well as made a list of my medications for the appointment tomorrow. I just want to be able to answer any question I am asked. I have had issues with articulating what has been happening to me and realize that I had better start keeping good records. My symptoms seem so scary to me, yet when I try to explain them I wind up feeling stupid because they seem so vague and scattered.

Rereading what I wrote has made me realize that I should have had a biopsy back in August. I'm astounded given my symptoms that this wasn't suggested to me by a single doctor even after five plus rounds of different anti-biotics with no improvement. Back then cancer wasn't even a thought in my mind, and apparently in any of my doctors' minds either.

Sorry I am always so long winded, but I really don't have anyone to talk to about this right now and it really helps keep me in the right frame of mind to take the steps I need to and not shift into all out panic mode. Thank you for allowing me to blab on, and please don't feel any obligation to humor me in any way.

Anyway, I mostly just wanted to share that I will be able to afford the biopsy and I am so glad that I am finally in a position to at least get some answers. Of course, whether you like it or not, I will update you along the way. Thanks to all for your time and patience and be well.

Oh by all means keep us updated! And good luck with today's Dr. Hope he finds the answer out for you. And hoping it's a good one.
It's sad how some Docs kinda "pass the buck" on to the next doc. It actually has happened here with a woman I work with. She's had a very bad skin issue, kinda looked like eczema(my 2 yr old grandson has it unfortunately)but she has it on the palm of her right hand and the bottom of her right foot and up her leg, she has gone to a dermatologist, who the first apt did nothing, 2nd apt took a biopsy, 3rd apt sent her to a "infectious disease" Dr yesterday WHO called the original Dr and asked him "why did you send her to me? She needs a deeper biopsy to find out exactly WHAT kind of skin condition she does have and treat the infection she got from itching and picking at it!" He was NOT a happy camper and the first doc more or less just took her money and never any satisfaction and has obviously a bad bedside manner. I would NOT pay that dr for this next visit. You gotta just watch and use your best judgement in finding a "good" doc that isn't going to see you as dollar signs and move you along and out of office just to get your money and the next patient in and never giving you satisfaction. I hope you find that today in this new doc!

You would think that they would want to do the best for their patients to keep them as clients - I guess the whole concept of buying medical care seems odd to me... My naturopath said in china or Japan they pay heir drs monthly... Until you get sick... They do not get pain when you are sick so it's in their best interest to keep you healthy. Good luck today penny... I do hope you get the answers you're looking for. Take care

Im so glad to see this update! I knew you could do it! Im so happy you finally found a way to get the biopsy. Now lets just hope it turns out to be noncancerous!!! Please keep us posted. If you get the biopsy it will be about a week before the results come back. Plan to keep yourself very busy so your mind wont make you worry too much. Great job at becoming your own advocate, I knew you could do it!!!!

praying for the best!

The visit to the oral surgeon went well. He said that he didn't think that my ulcer looked or felt like cancer, but that he also didn't have an explanation for what else it might be. He went ahead and did an incisional (I believe) biopsy removing the lesion and some of the surrounding swollen tissue.

It was a quick, ten minute procedure but I wasn't expecting him to do it immediately so I didn't eat before I went . I was told the results will take about a week to come in and I have an appointment on 2/20 to discuss the results. They said if the results are in sooner they will try to get me in sooner.

Hi, Penny
glad the appointment went smoothly and that the biopsy is done and off for assessment. Try to keep busy while you are waiting for the results.

Great job! I hope you feel a little better now that a professional gave you their opinion but also took the extra step to find out for sure if it was cancerous. Best wishes with your mouth to heal quickly.

Howdy,

Just thought I'd pop in for an update. Unfortunately I haven't heard anything back from the surgeon yet, but I do have some alright news.

While my symptoms are not completely gone, they have significantly dissipated since the biopsy, as has my extreme anxiety. I know most people go crazy waiting for the results, but for some reason just having the biopsy seems to have given me a great deal of relief. That is not to say that I am out of the woods, but I am no longer a basket case over the situation. I now wonder if my anxiety wasn't so bad that it enhanced my symptoms immensely. Or perhaps the anti-biotics played a hand in improving my condition. Either way I am thankful for every day that I do not have terrifying symptoms.

I am still a bit anxious to get the results, of course, but I think having someone finally take me seriously enough to run a test is what has helped calm me down. I was so scared that I'd never get to find out one way or the other and possibly do something about it. Now that things are rolling I feel a lot less out of control.

I hope everyone is well and I will let you know what the deal is after I get the results.

Penny, I am so happy that you have calmed down. Im even happier that your mouth issues seem to be healing. I bet you feel so relieved, like the weight of the world is off your shoulders. Stress can wreck havoc on a person's physical and mental well being. Please stop back in and let us know when you get your results. It should be any day now. Good luck!!!!

So glad you got some relief - just try to keep yourself occupied until your appointment and good luck!

Well, I just got back from the oral surgeon and I have my biopsy results. The most important part of the report for me, which I made them give me a copy of, was the part that said "THERE IS NO EVIDENCE OF MALIGNANCY".

When the doctor told me the news, he said I didn't look very excited about it. The truth is I'm unbelievably relieved, but still have no explanation for my other symptoms. I was expecting to hear the worst, though, so having not heard bad things is fantastic.

The biopsy site is healing nicely and looks much better than it did before. However, I still have redness and swelling behind my ears, random lumps around my mouth and face, and an area of thickening on my left cheek. I'm not one to dwell on things, and typically assume the best rather than the worst when it comes to my health because I have never much cared for doctor visits. However, we all know when something isn't right, and it is clear that something is up. I will celebrate for now definitely, but I will have to find a doctor who can help me find out what IS going on.

For anyone who is interested or has any input, here are the details of the report:

The biopsy was taken from the right buccal mucosa

They received a gray-tan nodule of soft tissue measuring 6x6x4mm. The specimen is trisected and entirely submitted.

Hematoxylin and eosin-stained sections reveal three similar mucosal segments showing:

-a raised vaguely nodular mass of fibrocollagenous connective tissue containing a mild chronic inflammatory infiltrate (primarily lymphocytes and a few plasma cells and mast cells)

-exposed surfaces covered by stratified squamous epithelium with mild hyperparakeratosis and basilar hyperplasia

-unremarkable skeletal muscle bundles and mucous glands at the surgical base

Histopathologic Diagnosis: Fibroma (irritation fibrosis, focal fibrous hyperplasia)

I don't expect any of you to spend time trying to interpret that for me, I am just sharing what was said and if anyone has heard of any of this I wouldn't mind commentary.

Again, I really appreciate all of your support and will continue to keep you updated as I continue trying to determine what is happening. If nothing else, maybe it will be helpful to someone else who has concerns about similar issues.

Thanks again, and I really do wish you all the best in your journeys. I've read so much about all of you and I feel like I know you now, even though I couldn't possibly know what you're going through. Your experiences as well as my own are a constant reminder that every day is indeed a blessing and we should all treat it as such, no matter our condition.

You have some kind of irritation going on that may be causing this... Any ideas?

Hi Penny! Congrats!!!! I hope you understand what your results mean. You doctor should have taken the time to explain to you whats going on inside your mouth. Try checking out some of the main pages on OCF. Here is a link and if you click on the blue writing it will give you more detailed info. This should help you to understand the lab wording.
OCF main pages, diagnosis

Try to think of this as your wake up call. Continue to avoid cigarettes, alcohol and mouthwash with alcohol in it. You dont want to irritate your sensitive mouth.

Best wishes with your healing. Be well!!!

Thanks Christine,

The doctor did explain things mostly, I am just very particular. I like to understand what all the words on the pathologist report mean whether they are good or not. The language the pathologists use sounds all negative to me, lol, but now that I've looked everything up I know what to worry about and what NOT to worry about should I ever have to have something like this done again.

If and when I do find out what is wrong with me, I will post it here so that others who come in afraid they may have oral cancer will have it to reference. I think one of the most helpful things for me in staying calm was reading the posts from people who really thought it was cancer, but it turned out not to be. I was 99.9% sure it was based on my symptoms.

I will probably continue to read here, just because I think you are an amazing bunch and I don't feel this disease gets enough attention. I also know now that if someone tells me they have had a suspicious issue in their mouth for more than two weeks they will likely get an earful about the need to have it checked out NOW.

Thanks to all of you who have helped keep me calm through this process and I wish you all the best.

You too so happy for you it wasn't cancer...