At 5 years they finally gave me a spiral CT and a couple of MRI studies - one for the eyes and the standard H&N, orbit MRI. They didn't like the spiral CT, said I had "broken glass opacity" in both lungs. Now this could be ANYTHING from minor aspiration, inhaling mold, minor lung infection, side scatter from the radiation or the beginnings of adenocarcinoma. Instead of my 6 month appt. with the MO they shortened it to 3 and want an instant replay of the spiral CT (without contrast this time). I'm reading into this the fact they want a review in 3 months means that they are not terribly worried about it and neither will I. I had the MRI over 2 weeks ago and still haven't gotten a reading report back.

In answer to your question Kerry, yes it is the recommended NCCN followup protocol, although my RO from UCSF demands an annual MRI. The standard chest x-ray is also NCCN SOP. Scoping, mirrors and palpation are still the gold standard.

Scans are a mixed bag. Radiologists are bound to report every single anomoly they find, waiting for the reports and then having them sorted out can cause much angst.

Personally I would like to see an annual PET/CT as part of standard followup but it's all over the map which doctors, institutions and even countries have a standard in that regard.