← Return to Initial imaging and tests; what to expect after initial NETs diagnosis

Discussion
Comment receiving replies
Profile picture for prairiezebra @prairiezebra

Interesting. I thought that the Mayo folks would probably order whatever scans they thought would be most appropriate for NETS. I'll have to be sure that I've shared enough information with those NETS specialists so that they can tell me what scans or tests would be most appropriate. I would not want the doctors to go against what they think is the right set of tests, but I would like to know more about why they don't think a PET scan is something that should be part of the plan.

Jump to this post


Replies to "Interesting. I thought that the Mayo folks would probably order whatever scans they thought would be..."

My “guess” on why the PET scan wasn’t ordered is due to it being stage 1/small size & your age. Plus, insurance companies will deny any procedure they can so it’s cheaper for them. The Dr also needs to submit thorough documentation. My insurance company denied my first PET scan & Drs appeal was also denied. When they finally approved it, it had metastasized to liver, appendix, peritoneal lining, diaphragm & upper/lower colon, stage 2-3. I ended up having a 2nd huge, painful, cytoreductive/debulking surgery. Once I retired & Medicare was primary, I’ve had no issues getting PET scans approved. That is why I preach to be your own best advocate & push for the tests you want/need.