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

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@lenorahaston

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.

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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:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
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?

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