Are their specialists that can see patients or take a look at previous scans? My mom was told there isn't any because it was so rare so they continue with CT scans and urine analysis every 3 months.
Katie Fanslau, RN, MSN, Nurse in Nuclear Medicine at Penn Medicine responds.
At Penn, our radiologists review outside films and images all the time. There are also other imaging studies done to evaluate neuroendocrine cancers such as MIBG scans, Octreotide scans, MRIs, etc.
As for physicians who are experts in Neuroendocrine tumors, there are many in the U.S. and abroad. They may not be in your immediate area, but when you have a rare disease, it is worth traveling to get expert input into your care. The Carcinoid Foundation maintains a list of experts around the world.
This question and answer was part of the OncoLink Brown Bag Chat Series. View the entire transcript from the Focus on Neuroendocrine Tumors Webchat.