Pancreatic neuroendocrine tumor

Posted by ronregency @ronregency, May 10, 2019

I discovered a nuuroendocrine tumor on the tail end section of my pancreas by fluke. Is about 13x14 mm in size has a hardcore center. Presently not showing cancerous signs, but should not be there. Any thoughts.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | May 11, 2019

Hello @ronregency,

Welcome to Mayo Connect and thank you for posting about the pancreatic neuroendocrine tumor ("NET"). Most folks who have been diagnosed with NETs were also found by "fluke." Was yours discovered during a CT scan or MRI or upper endoscopy?

If you have done any research on NETs you probably know that this is a rare form of cancer, with very small cells and slow growth. Is the doctor you are seeing a NET specialist? This is an important factor. Here is a website that will provide you with the names and locations of NET specialists throughout the world, https://www.carcinoid.org/. If you click on "Find a Doctor" you can see where the specialists are. This website will also give you a lot of information about this rare disorder.

If you would like to read other discussions on Connect that deal with NETs in the pancreas we have several members who have discussed this as well, please click on this link to read their posts, https://connect.mayoclinic.org/discussion/neuroendocrinetumour-in-pancreas/,

Have you been having any symptoms prior to the discovery of the NET? Is your doctor planning on regular follow-ups to track the growth of this tumor and/or to look for additional tumors that might occur? Have you had a Gallium 68 PET scan (this is a scan that will show any other NETs that may be elsewhere in your body? (See a discussion on this scan at https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/.)

I look forward to hearing from you again.