Went back to my ENT for follow up after the negative PET scan findings. I got a copy of the report, and the findings are as follows:

"Within the oral cavity and the retropharyngeal/parapharyngeal space, I see some abnormal physiological-appearing ratiotracer accumulation within the mucosal lining of the oral cavity. This does not demonstrate any assymetry in uptake, and also the uptake intensity is no more than expected from normal examination. There is no evidence of cervical adenopathy. There is no suspicious uptake within the chest, abdomen, or pelvis."

The report goes on to state that follow up visual endoscope should be done to ensure there is no superficial disease that PET may not pick up.

The ENT did another endoscope, and noted that the irregularities on the base of the tongue were smaller. He also noted that there is uniform irritation from the nasal cavities all the way back to the throat. Interestingly, based upon some history I gave him, and my existing fibromyalgia, he believes that I likely have obstructive sleep apnea, and is sending me for an evaluation of that next week.

Given the PET results, the uniform irritation and the fact that the lumps on the tongue base are smaller, he does not see the need for biopsy now. He wants to see the results of the sleep apnea evaluation, and wants to see me again in 90 days.

Overall, he seems to be pretty thorough. He said if I wanted to have someone else look at the PET results, by all means do so. I am going to have an oncologist go over the results, even if I have to pay for it. I figure this is no time to be lax. I would be interested in your thoughts.

Whatever the results, I sure appreciate the support and information I have gotten here. I will check in with any new developments.

Jeff

Hi Jeff,
By all means get a second opinion if it makes you feel more comfortable. Your PETscan report sounds fairly typical of a scan done close to the end of treatment and sounds pretty positive overall. Reading radiologists tend to be very conservative and that is a good thing although a little creepy for us who are waiting for the other shoe to drop. My early MRI's read much the same way, with "direct visualization" recommended (i.e., the scope and mirrors). They found nothing of any consequence, just the normal healing abnormalities.