← Return to Liver neuroendocrine tumors: I would like to talk with others

Comment receiving replies

I was diagnosed with Stage 4 midgut NETs in Sept. 2021. I have metastses in the liver ( 10 % tumor burden), bones, pleura and lymph nodes. Being followed at Fox Chase Cancer Center in Phila. Currently being treated with Octreotide LAR. Have pain and discomfort in epigastric primarily.

Jump to this post

Replies to "I was diagnosed with Stage 4 midgut NETs in Sept. 2021. I have metastses in the..."

Hello @lenorahaston and welcome to Mayo Clinic Connect.

I'm glad that you are looking for support and have found this discussion group. Let me introduce myself, I have had three surgeries for NETs in the duodenum bulb without any metastasis yet. My NETs were found incidentally when the doctor was doing a routine upper endoscopy. I actually did not have any symptoms.

I would also like to invite you to the next NETs support group, which originates from Mayo's facility in Florida, but is a virtual meeting that is attended by NETs patients across the county. It is a great way to hear the journies of others who are dealing with NETs. The group is facilitated by Michelle Walsh, a Mayo Clinic Social worker. Before the speaker, there is a time for everyone to share their stories if they choose to. Here is information to register:
Zoom Support Group Meeting, Thursday, January 6, 2022
5:30pm – 7pm EST (2:30pm – 4pm MST), Dr. Jason Starr

Topic: Genetic Testing
(patients, caregivers, and families are welcome to attend) Mayo Clinic Oncology, Florida
Location: Virtual (Zoom)

Please register in advance for this meeting since space is limited to 50 participants:
After registering, you will receive a confirmation email containing information about joining the meeting.

I look forward to getting to know you a bit better. Could you share, as you are comfortable doing so, a little about what led to your diagnosis? Have surgeries been suggested yet or just medication treatments?