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)

Don't puke, Darcy.

My husband had a CT scan come back positive for liver mets in July. I also wanted to puke. His MO went through the scan herself and wasn't sure she agreed. A PET scan was subsequently done. No mets. Whew.

The MO told us that radiologists have to mention every possibility in their reports. Think lawyers and liability.

Good luck!

DEJ,

If I could reach through the ethernet and give you a big sloppy kiss, I would. I'll sure sleep better tonight knowing there's at least one 'whew' out there.

Thanks!

-darcy (Matt's mom)

False positives, "suspicious areas" and "regions of interest" are very common in all types of early post Tx scanning modalities. Typically the radiologist will order "direct visualization" by the head & neck sugeon or ENT. Remember that all scans are only a piece of the diagnostic workup and typically not conclusive in themselves.

I didn't have a "clean" MRI for over a year post Tx.

Thanks, Gary. What is direct visualization?

-darcy (Matt's mom)

I will second what has already been said. My primary oncologist/ENT and my Radiation Oncologist both use direct visualization every visit. "Direct visualization" is manually examining and visualizing the affected area, as opposed to relying on a scan.

PET/CT is a useful adjunct to direct visualization, but it is only another tool. Especially when you have had radiation, PET/CT will show "areas of concern" etc., due to the tissue changes and inflammation. My medical oncologist ordered a baseline PET/CT for me, which I had yesterday, as I am just about at the 3 month mark post-treatment. I have a fair amount of radiation fibrosis in my neck, so I know that the report will come back with suspicious areas there. I have had my tongue base, vocal cords and related areas directly visualized by three different doctors over the last three weeks, and all looks "great" according to them.

Given the huge number of patients these oncologists see, I am very trusting of their direct visualization, and am not overly concerned about the scans at this point. Hope all turns out well for you!!

Darcy,
My husband had a lesion that was found thru a visual inspection at his checkup.
Same tonsil.
Had it removed and biopsied w/i 3 days with a laser surgery and it came back clear.
Pathology showed irritated tissue from the radiation treatment.
Maggie

Ahhhhh. Thanks Jeff - and Maggie too. The surgeon has her hands in my son's mouth every month at this point. I guess that's why she's not worried.

Whew and a half. I feel SO much better.

THANKS!

I had a CT scan of my head and neck in June of 2006 for tonsil swelling, ordered by my ENT. The report--No Evidence on Malignancy. Boy were they surprised to find a stage II tumor 9 months later during tonsillectomy. My oncologist said that a CT scan does not 'show malignancy'.

I should have added that "direct visualization" also includes other things such as a nasolaryngoscope (from time to time - fiber optic down the nose), long specialized mirrors (typically preheated to prevent fogging over) and also palpation, which is the gloved hand down the throat and checking the lymph nodes externally. Some or all of these are typical post Tx followup. They are no big deal and I am glad that someone is checking. This is considered the gold standard for H&N followup - along with an annual chest x-ray. Some here do get regular PET or PET/CT's as well but it is not in the NCCN oncology practice guidelines so it may be an institutional protocol or, conversely, insurance companies won't pay for it.