Hi Ward,

Well, you're at a top CCC that is part of the NCCN network, and I'm sure you're in good hands!

I often heard the terms stable, all clear, no signs of cancer, cancer free and such, but not "cured" which one of my ENT says will be at 5 years. As long as there is no suspicion of cancer, I don't care what words are used.

I agree what was already said. PET scan are highly sensitive, and from one report I read are in the mid 90% accuracy range at 3 months, even higher at 4 months, so time does matter. Just as important, is proper patient preparation such as diet, no chewing gum, coughing, swallowing, etc. and timing of the PET after the FDG, which can effect uptake. Then comes the experience of radiologist who interprets the scan. Besides the scan report, I obtained a cd copy to bring to my ENT, radiation and Medical Oncologist. I can't say how many times my doctors were happy having done so as they may not be posted fast enough as were my visits. Oncologists never seemed to review the scans other than the report, to my knowledge.

I've had enlarged nodes after treatment. Once my radiation oncologists waited 5 months to do a scan, in belief it was fluid, necrotic. which then came back negative, Other times it was suspected to be inflammation, but not suspect.

NCCN guidelines recommend follow-up scan 3-6 months post treatment, but it's only for certain disease, oropharyngeal is included, but for T3-T4 disease only. Anyway, all my doctors followed the 3 month post treatment scan, then 6 month repeat scan, sometimes alternating between MRI since I can no longer have CT contrast.

There are several schools of thought; watch and wait, a planned neck dissection or one that is responsive after treatment response. I think if the tumor hasn't shrunk more than a certain percentage, has a certain SUV, where it's located, then there might be more concern, and have an FNAB, a direct biopsy and or another type scan done. Even then it's difficult to say after treatment, and had enlarged lymph nodes that were positive by FNAB, which showed mixed pathology, but proved negative by surgical biopsy, and others that weren't, so it worked out.

It depends on the doctor too. Not sure who you saw, Medical or Radiation Oncologist, but had one oncologist that sent me for an MRI after a suspect PET, which came back negative. There should also be planned follow-up visits with your medical and radiation oncologist, ENT every 1-3 months the first year, increasing in time as years go by where they do a visual and palpable exam and some flex scope, so you will be monitored.

You can also do self monitoring by visual and palpable exam. I found all my cancers in the lymph nodes, cervical neck, except for one, which were then followed up by doctor visit, biopsy, and scan.

I hope this helps and good luck.