I know none of you remember me. I posted a few times about the sore in my mouth I ran from dentist to dentist with and they all did nothing but look at it, say " hmmm, unusual, doesn't look like cancer. Go home" No biopsy, nothing. Went to an oral pathologist, dx'd with leukoplakia in several areas.

Hx: 32 year old single mom. 2 pack a day smoker, began smoking at age 13 or 13. No alcohol. Used to drink alot when I was in my early 20's but stopped.

Fast forward to now: Began to experience some right sided neck pain like a pulled muscle. Nothing major, would come and go but the 1 original lymph node that I started with last year on the edge of my jaw is still there.

Began to get hoarse. Worse in the morning, get better by midafternoon, return at night. Deep in my throat on the right side, deep localized pain.

Finally scraped up the cash to see my internal medicine doc for the neck pain because years ago we discovered I have a bulging disc in my neck so I thought it was the cause of my neck pain, facial pain, etc.

He examined me, xrayed my neck, xrayed my sinuses, all clear. Looked in my ears, clear. He found the jaw lymph node and also found one behind my right ear, 2 under my chin, 1 further down in my neck.

He asked if my throat hurt and I said not really. He had me open my mouth and saw the original sore in my right cheek that is still there, still wide open, won't heal. I had to stick my tongue out and my left side looks great. Can't even see the tonsil. Right side, different story. At the far back of my tongue where the tonsil is, all you see is a mass there. He asked me again if my throat hurt, again, I said not really. Feels more scratchy than sore but the deep pain on the right is pretty bad from time to time.

He asked how long my tonsil had looked like that and I told him I hadn't noticed it. Other DDS' and 1 ENT, 2 oral surgeons I saw last summer about the sore in my cheek said " go home, doesn't look cancerous, you don't need a biopsy, you're too young for cancer. Go home, live your life, forget about this" THey all brushed me off. Never did one thing. Nobody. I never noticed the tonsil area because I don't look in my own throat or anything like that. Even as a kid I never had alot of sore throats or anything.

That is when I stopped going to the doctor, stopped going to the dentist. None listened to a word I had to say. I asked for a biopsy, they all said no because it doesn't look like cancer there.

My internist wants the tonsil out asap. He said it doesn't look good and I need a scope down my throat to see what it looks like deeper in there.

He said the nodes have to come out as well and IF, it comes back with cancer in that area, it's possible it could have come from that original sore I fussed about last summer.

He didn't think it looked like strep or mono but tested me anyways and they were fine.

My neck hurts pretty bad though. That's the only thing that really bothers me. Except when I talk alot I hurt on my right side.

I lost my job last month and also lost my health insurance. I have applied for state assistance ( TNCARE) but it takes months for an answer and I told my doctor that. He said, you don't have months, you need this done as of yesterday.

I don't have that kind of money. Period. I have enough money to pay my rent and car note for July and that's it.

What really upset my doctor is all the specialists I saw last year all said " oh you're too young for cancer, it doesn't look cancerous, no biospy, go home"

His reaction was since when is anyone too young for cancer and since when did all cancers look alike? Especially with a diagnosis of leukoplakia and a smoker? Didn't make sense to him and he's as mad as I am.

But an ENT isn't going to see me for free and do work at no cost or sliding scale, etc. Hospital won't take me for free. Waiting on a response from the state will take a long time and even then, they can deny me.

I really don't know what to do. Any suggestions?

Take rent money and buy health insurance,since you have not been diagnosed you do not have preexisting condition that would allow them to deny you. Your health is far more important then your rent.Talk to your landlord, your parents, anyone that can help! Time is of extreme importance!!!

Thanks Jeff. I will check into that. I also spoke with a friend of mine who is a social worker.

She said if push comes to shove what may be possible is to pay out of pocket for an ENT, get my internist to send a letter with me NOT to blow me off again, do the biopsy. She suggested that have an ENT do a direct hospital admit and have them call in an order ahead of time for a hospital social worker to see me upon arrival and they can get the ball moving real, real fast and can get me medicaid/Tncare on an emergency basis.

I remember this was done for my daughter when she was born. She was in NICU, my health insurance stopped the day I had to quit my job, she couldn't go without insurance and her social worker got her emergency coverage. They know the ropes and how to cut thru the red tape.

This absolutely comes first. I will find a way. Like I said, I told my doctor about the wait and he said I don't have that kind of time. End of story.

Time is absolutely of the essence here.

Hi Tiffini,
I remember you. Can you COBRA your insurance since you've only been laid off a month? Really, you will need good insurance if it is cancer. The bill for my radiation alone was well over $200,000.00. MRI's are around $1,500.00 each, doctors visits (specialists) around $120.00 (for a 15 minute visit), and then there was the meds and all of the other tests. As Jeff said, since you don't technically have a "pre-existing" condition, since you have not been Dx'd, you can enroll in an HMO with a small deductible (that's what I did). You don't say where you're from. Kaiser Permanente is what I have and they have been incredibly good and thorough with my treatment. They paid 100% for IMRT at UCSF (the 7th highest ranked comprehensive cancer center in the US). At your age, Kaiser would charge you around $260.00/mo. for a $5.00 deductible plan (doctors visits and prescriptions -their best premium plan).

There are sources for money to help pay - from SSDI to asking your church benevolence fund team for help. Some insurance plans will give you financial aid through the HMO itself (you have to be signed up already).

You've got to fight for this - you do not want to rely on the public health care safety net for this kind of problem (IF that's what it is).

Like you I went into this with no health insurance. I found a loophole (self employed, setting up a small group plan (my wife and I), they CAN'T ASK about any pre-existing conditions and will admit you to the plan the same as if you went to work for Hewlett Packard or General Motors. And unlike personal plans, the coverage start date was IMMEDIATE! I actually made anonymous calls and tested this because I just didn't believe it -but it was true. They didn't even send us a bill for 2 months - by that time I had already started chemo and IMRT ($5,000.00 a treatment)-unbelievable! I did feel a little guilty but it was completely in line with their advertised policies. We had to submit proof of self employment (business license, etc.) and that was it. You may have to COBRA since they usually have waiting periods for private plans or become a consultant, get a business license and get your own small group plan.

Hi Again,
I take it that the biopsy you had done in February came back negative?

Hi Gary,
All that showed was leukoplakia. That's all. The oral pathologist has now since retired from practice. I was also treated for gum disease with scaling.

When I was employed, I was offered insurance thru the employer, I already had coverage thru my exhusband so I declined because we were still legally married at that time.

Once the divorce was final, I lost coverage. I obtained a letter thru the insurance company with the date coverage terminated and presented it to my HR rep. She submitted it to the ins co and they declined coverage because too many days had lapsed in between the time I lost coverage and the time I applied for coverage as a change of circumstance. I would have had to wait until open enrollment in the winter to apply.

My only preexisting condition is a history of migraine headache but gosh, I have had them since I was a teenager.

I did check into a policy with blue cross/blue shield and they want $80 a month, $5,000 deductible, no coverage for preexisting conditions for 12 months.

Hopefully something will pan out soon.

I know all of this is very expensive!

Obviously the first thing to do is find out what this actually is. But knowing how screwed up the system is, I would opt for going and getting blue cross or something similar now, passing on paying other bills. Once that is in effect, at least you know that you are covered for anything that lies ahead. IF repeat IF, you find that you have something really serious here, more than leukoplakia, you have legal recourse against those doctors who told you it was nothing. While a pain in the rear to go this route, there is a standard of care issue and a missed diagnosis that they can't get out of. That will certainly pay your bills in the long run.

I should mention also, that if you are diagnosed by a private physician, not through insurance, i.e., you pay at the time of service, it is not reported to the nationwide insurance database clearinghouse. So only you and the doctor will ever know your Dx.