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