Christine,

Thank you so much for taking the time to write the reply in such detail. I will read the items you have referenced. I am sorry I was not clear in my description of the situation. I am a little overwhelmed with the terminology and will try to learn more.

I am confused now about the diagnosis we got from the ENT. Maybe this cronology will clear the confusion:
1. Had a sore throat and cold earlier this year.
2. A lymph node on the right side of the neck (cervical node) swelled up and did not go down but got larger.
3. Primary care recommended hot compress and decongestants and wanted to wait until physical later in August to see if the node was smaller.
4. Decided to go to an ENT instead of waiting.
5. ENT did a Fine Needle Aspiration of the neck lymph node saying it was the cervical lymph node - confused me because I thought the cervical nodes were someplace else in the body.
FNA was not conclusive.
6. ENT did an incisional biopsy removing the lymph node.
7. The pathology report said the node was squamous cell carcinoma and the ENT said she needed a PET scan to try to determine the primary cancer.
8. PET Scan was done and the ENT said it showed up in both of the Tonsils part of the tongue and another lymph node on the left side of her neck - so tongue, bilateral tonsil and bilateral lymph nodes in the neck. In addition there was a lit up spot on her T2 vertebrae in her spine.
9. ENT referred her to a radiation and medical oncologist for treatment saying he did not want to do surgery on tonsils because of bleeding and healing problems.

So we are in that scary place waiting for doctor appointments and wanting to do the right things and learn to ask the right questions.

Because of the questions you and David have asked I am wondering if she even has tonsil squamous cell carcinoma. How can we be sure unless there is a FNA or biopsy of the tonsil or maybe the tongue or both???

In any case it seems we are moving in mud because it takes so long to get these appointments set up and we are not sure who is in charge.

I am going to try to get more information on MD Anderson and how to get an appointment. We have also been talking to Dr. James Suen University of Arkansas Medical Sciences about her diagnosis -

Does anyone know of Dr. James Suen UAMS University of Arkansas Little Rock?
Thanks,
Cheryl