The problem is a lack of consensus between the big institutions. This study though will stimulate (NCCN perhaps) a group to develop some standardization to the guidelines.

This is still dependent on doctors continuing to be involved with their patients long after they are found NED. That is a real problem, as their general attitude is that at NED they have done their job and you need to get on with your life. This is why the issue of a patient noticing pain in any organ region, even very distal to the original disease, and bringing it to their doctor's attention is very important. Problematically, too many of them will not be up on the literature, and may be dismissive.

This is where advocacy for yourself becomes extremely important and what we find for patients through OCF and see that they are aware of also becomes important. The OCF RSS news feed gets all these kinds of things, and once you've done this dance, it is a good thing to keep up on what the current thinking is rather than depend on an over worked and booked oncologist to know everything.