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.

Tiffini,

I do remember your original posts, especially as I read your update. I'm so sorry you have to go through this, but you seem to be a bit better now that you have a good group of doctor's that seem to know what they are doing and more importantly care.

You keep the psoistive, fighting attitude and keep us posted. As you know we will be here for you and try to help any way we can.

Dinah

Hi Tiffini,

Glad to hear you are on the road to recovery. Try
and keep a positive attitude. Alot of people on this website will be pulling for you. Remember to post any and all questions you have as you go through your treatment. Dan

Hi Tiffini,
I am truly sorry to see you back here. We were all hoping for a different solution to your problem. When I was diagnosed, I was aware that something was going in my throat for months before I finally got an accurate diagnosis. My dentist, oral surgeon, hygenist (who examines each time for cancer) and MD all missed it. In all fairness to them, I was convinced (denial can be a deadly thing) that it was an infection (and I think that I convinced them also). Finally the MD told me that I needed a referal to the ENT and was diagnosed with cancer within minutes of arriving in his office (which I further delayed 2 months after the referal). I remember advising you to see an ENT on the very first same day I started treatment. This is not to criticize you or add to your fears but rather to send a message to others so they can learn from OUR experience that these kinds of problems will not go away or improve with time, in fact, they continue to get more deadly and require more extensive medical intervention as time passes - and this can be a relatively short period of time. It very possibly meant the difference between Stage I or II vs. Stage III or IV for me, which was my ending diagnosis. By the way, the ENT who made the intial Dx was pissed off also (about the time lag and missed opportunities for earlier intervention).

You don't want to see an oral surgeon for this. They're just a fancy dentist. The oncologist is correct to refer you to an ENT or head and neck surgeon.

I can't speak to your headaches because I never had that problem. I did have ear pain and headaches post treatment due to clogged up eustachian tubes but that cleared up on its own.

I am grateful that they are finally getting a handle on your diagnosis and can start treatment for this.

I can certainly relate to your fears. All I can say is it got a lot better when they finally had a treatment plan and treatment started. We will be here to walk alongside you as you go through this.

Dear Tiffini,
I wish I had words of wisdom to give you here. I can only say that, as a sister in this fight, I love you and wish only good news from here on. You are certainly in good hands with these doctor's and, more importantly, in Good Hands with God. So, you are never alone, OK? Has the Doctor thought of "tic doloreaux" for the severe facial pain? Might be worth asking.
God bless,
Judy U