My son had a partial glossectomy on June 13th for T2N0M0 SCC of left side of tongue. He had his first post-surgery CT on September 20th. Our ENT/surgeon read showed the scan to us same day. She pointed out a lymph node that we were not supposed to worry about because it had a fatty center. She didn't really need to point out all the white stuff on my son's tongue -- that was pretty apparent to all of us. She wasn't worried about that either. She thought it was just scar tissue.

Fast forward a few days. The NP calls to schedule my son's reconstruction surgery and tells him the radiologist wants to "double check" something,so they were scheduling a PET. She also said the ENT left a big note on the file saying "Tell them not to worry!"

So I'm doing my best not to worry, but then I needed to talk to NP again today re something else and I mention the CT, cuz, my son is just 22 and who knows if he got the info right when she initially called. She explained that the problem is an "enhancement" on the tongue. The ENT says this is an "over-read", that scar tissue fro the surgery is causing this to show up. But.

The radiologist "can't rule out recurring tumor".

(Insert bad words and a feeling like I want to puke here.)

I've heard you can expect false positives on your first PET, but I thought the CT was more accurate. Tonight I read a little about CTs and I see that they sometimes do have trouble differentiating scarring from active disease.

Help a mother out. Tell me about CT over-reads you have experienced or have heard about. Pretty please?

-darcy (Matt's mom)