Liver neuroendocrine tumors: I would like to talk with others

Hello @felo and welcome to Mayo Clinic Connect. I can understand that you would want to talk with others who have also had liver NETs. Connect does have a conversation about this topic. Here is the link, https://connect.mayoclinic.org/discussion/newly-diagnosed-with-net-in-liver/

I look forward to getting to know you better. If you are comfortable sharing more information about yourself, I would be interested in knowing: How long ago you were diagnosed? Has your doctor suggested any treatments? Are you having pain or other symptoms?

@felo

I wanted to invite you to a NETs support group meeting this Thursday, Jan. 6, from 5:30 to 7 EST. I think you will find this group to be very supportive. This is a virtual meeting, on Zoom, so folks with NETs from all over the country attend. Dr. Jason Star will be speaking. Dr. Star is a NET specialist from Mayo Clinic in Jacksonville, FL

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 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.

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?

Thank you for your response. I sent over a more complete profile earlier and also registered for the zoom mtg this evening which was acknowledged.

@lenorahaston

I'm glad that you were able to register for the NETs support group. I was able to attend the first hour. I hope you were able to listen to the entire meeting. Dr. Star is a good speaker, and I'm looking forward to the March meeting with the NP who will discuss genetics and NETs more completely.

How are you managing the discomfort in the epigastric area? Are there any meds that can help with that pain?