The last time I wrote, I was uninsured. I applied for and got state insurance. My PCP's office was supposed to refer me to an ENT to have the original place in my mouth excised for biopsy, the office manager screwed the referral up so that never happened.

Due to some weird anemia ( not B12, folate or iron deficiecy ) they referred me to hematology/oncology. Saw the hem/onc. He didn't pass go, didn't sit on anything. I had CT scans last week of my neck, throat, chest, abdomen/pelvis.

My chest and on down is clear. Neck isn't clear. He examined my mouth, saw the spot. That canker sore that won't heal...remember? The tonsil now has clumpy tissue that pokes out around it and on the roof of my mouth there's a white/red speckled spot that's above the clumpy tonsil stuff and if you draw a diagnonal line from the original sore, to the roof of the mouth, that's where the new spot is.

Neck ct showed 4 lymph nodes are enlarged and the hem/onc asked me why nobody did anything and I told him, every dds I saw said it was nothing other than leukoplakia dx'd by an oral pathologist.

I have one ticked off oncologist. He's sending me to a general surgeon ( my insurance will not allow me to see an oral surgeon since I am older than 21 ) and the general may have to call in an ENT.

The inside of the right cheek has to come out, the flat area in the roof of the mouth has to be biopsied, the tonsil has to come out and the nodes. They also did a PET scan and the head/neck is where it lit up. He feels like the original sore is most likely the primary but they need the pathology to be certain.

He's a good oncologist. The clinic has an excellent reputation and he said to absolutely hope for the best, prepare for the worst and it'll be a bumpy ride along the way.

I've also been referred by them to see a neurologist this Friday due to the headache but the facial pain is completely indescribeable. Some days are better than others. The sores are on the right side and so is the facial pain. It even makes my right eye hurt. I saw an opthamologist and he didn't see anything. My eyes are dry but he said it wouldn't cause this kind of pain. They think it's referred pain from the oral cavity but it's nerve like pain.

He told me not to worry, I belong to them now and they definately won't let me fall thru the cracks. He said as soon as the path comes back, he will have a treatment plan in place within 24 hours of having the results. He does not expect any of this to come back benign. Not with what they saw on the scans. The oncologist read them, a radiation oncologist, intervential radiologist and diagnostic radiologist all looked at them. They all introduced themselves to me that day and one by one, they would pat my shoulder on their way out of the xray room.

Just waiting now on the referral to the surgeon. Let him take it all out, see what it shows.

I'll be ok though. I'm in excellent hands. I'm scared. Real scared. I guess it's human nature to feel afraid.

Any words of wisdom for me?

Many thanks.