I have been remiss in posting of late. Now I seek advice. Pet scan lit up in neck area and chest area. My VA ENTs call this inconclusive and have ordered an anatomical CT scan of the neck and chest. What's your opinion on this.

Darrell, the PET scan has a high rate of false indication (positive). There have been many such scans that later proved to be nothing serious. Try to set it aside until the other tests are done.

Just went thru this with PET/CT that lit up in lung. After much reveiw and a new CT it was clean so the conclusion was false positive on the PET. So follow the process as quick as possible and hopfully it is false positive.After going thru this I am not sure how I feel about PET/CT in this process!Good luck.

Darrell, PET scan only finds high rates of metabolic activity. Its use is to direct the medicos to look more closely at a particular site in the body. Wait till you get a more focused look at those places before you get anxious. Any test, short of physical tissue biopsy, does NOT identify cancer with any certainty. The scans just allow them to look in more focused areas. Let us know what you learn. Be strong. Tom

I question the validity and need for Pet scans. I have been away from this forum for sometime and had forgotten how much I need this.
Darrell

We spoke at length to the radiologist who was going to read Barry's PET/CT scan (which was done Thursday). He first talked about how the fused PET/CT scans were an improvement over PET alone (or PET followed by a later, independent, CT or MRI). However, he admitted that there was still a certain small percent of false positives, and also, of ambiguous scans. He himself has read 100s of HNC scans, and says there are still times when he is not sure if the "hot" area is due to inflammation, healing or residual cancer. In most cases he can tell (based on experience), but not all. If the "hot" area can be biopsied (say, base of tongue) that would be done. If not, the scan repeated after a certain period and reviewed for changes.

They have enough confidence at Hopkins in this procedure that most patients who have gone through chemoradiation, like my husband, decline post-treatment surgery. (Although some of the surgeons would still like to do it !). I know Barry would not have been very confident in this decision without a PET/CT scan.

Gail

Darrell, I'll go one further and tell you that my ENT refuses to order a PET scan for me. This has been a source of conflict for me for two years now. The last time I asked, he had just completed a seminar where the weakness of PET type scans were discussed.

I am on one hand dissapointed that I am not getting the "Best" follow-up, and on the other hand I am happy that I am not forced to worry about a false (or inconclusive) reading. (which you know is no fun)

I wish you well.

Darrell,

My Florida ENT wanted me to have a PET scan, the original ENT does not. (I was scared to death to have the PET due to reports here of false positives.) He has me do the CT with/without contrast and a chest xray so he is comparing the same test every year. I guess if something showed on the CT he would test further.

I am sorry you are having to worry about this right now, and my thoughts are with you.

Sincerely,
Lisa

A properly administered and interpreted PET scan is an extremely valuable diagnostic tool. I'm going to go out on a limb here, but I imagine the scans are good, just read wrong. All scans are not going to be perfect, but if the PET scan causes you doctor to take a closer look, where is the problem? Not wanting a scan for fear of a false positive seems a little short sighted, on the part of the patient and the doctor. The big plus on the PET is it's ability to locate distant metastases, not diagnosing a reoccurrence in the original surgical site. With all the worry on here about having a reoccurrence you would think all tests would be welcome. A false negative on a PET is almost unheard of. Darrell, was there a high uptake to the lung area? Were they cocentrated spots? Were you a smoker, and if so, is that why they doubt the test results?

I'm wondering if a false negative on a PET really is that rare. My husband had a PET scan before surgery and the PET failed to pick up the 1.7 centimeter tumor in his tonsil and it also didn't pick up a lymph node with metastatic disease.

Anita