Surveillance and Monitoring--Essential Practices

Most likely you will be dealing with NET cancer in some way or another for the rest of your life. It is important to understand that NETs recur very often, sometimes years later, even if a patient is determined to have no evidence of disease (NED). Patients should be checked at regular intervals for any changes. A provider with NET expertise will know what to look for and how often to check.

Surveillance is watching for disease recurrence once all visible signs of the cancer have been removed by surgery or other therapy and the patient is considered to be NED. Even in this case, there should always be a physician-monitored schedule of surveillance. This schedule of surveillance may differ in how (which modalities) and when (how often) depending on individual circumstances.

Monitoring is watching existing disease by comparing the results from the latest tests and scans to prior results. How you are monitored will depend on the type of NET you have and the location and extent of the cancer in your body. It may include blood tests, 24-hour urine collections, and imaging scans such as CT, MRI and/or nuclear medicine scans such as the Ga-68 or Cu-64 DOTATATE PET scan.

If you have any questions about your monitoring plan, ask your doctor. It is important to have confidence that you are being managed well. Experiencing bouts of anxiety can occur as part of having these regular scans and check-ins with your oncologist. Support groups often discuss the ups and downs of living between scans. It is part of the reality that you will adjust to in your own way, which is not to say it is easy. Keep in mind that the same adage “knowledge is power” is as true here as well as during your first diagnostic work-up. When you are worried, remind yourself that early detection of changes leads to earlier intervention, which offers the best shot at controlling disease!