Neuroendocrine Tumors (NETs) Support Group

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Hi there Teresa, It’s been a little over a year that I’ve been on the shots....

https://connect.mayoclinic.org/comment/1397745/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2025

I've had MRI'S and CT scans (5) with contrasting. Had my latest Friday my 12th chemo...

https://connect.mayoclinic.org/comment/807241/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Thanks for your comment. I have since learned that non functioning (no symptom) tumors do not...

https://connect.mayoclinic.org/comment/1166857/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2024

Hoping all is going well for you. My husband is in the middle of his 4th...

https://connect.mayoclinic.org/comment/942780/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

@michellesimpson10 My wife received a diagnosis of mass of pancreas near tail of pancreas, and too...

https://connect.mayoclinic.org/comment/845638/

Discussion: New diagnosis of NET: What should I know and do to plan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2023

I know this is a bit of an older thread, but for those who had metastasis...

https://connect.mayoclinic.org/comment/842575/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

Hello @perryleeoneal and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1312862/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

@kaw627 @hopeful33250 @retiredinkazoo @lindaldotson @dbamos1945 From the e-mail I received from LACNETS: "Join us on Saturday,...

https://connect.mayoclinic.org/comment/972907/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 30, 2023

Hi, His primary is undetermined. It has metastisized to liver, lymph nodes, mesentery, and the fat...

https://connect.mayoclinic.org/comment/911173/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

My wife (NETs) and I are very interested in nutrition. In 2015 and 2016 she had...

https://connect.mayoclinic.org/comment/275687/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2019

It’s really hard to say the right things! I can tell you the diagnosis is a...

https://connect.mayoclinic.org/comment/1246314/

Discussion: Grade 3, poorly differentiated duodenal NET metastasized to liver-

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2025

Hi, I went for whipple in 2020 as found a PNET Gastrinoma Grade1 Functional. In July...

https://connect.mayoclinic.org/comment/1162931/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 26, 2024

@ceefer I am doing great thanks. But, it was a struggle to get here. I experienced...

https://connect.mayoclinic.org/comment/1499342/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 9:39am

I had intestine resection to remove discover nets in my intestines. Removal of ovaries to remove...

https://connect.mayoclinic.org/comment/1425191/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

My doctor told me to never drink any alcohol I had surgery 18 years ago had...

https://connect.mayoclinic.org/comment/1403032/

Discussion: So, now just still waiting, losing my mind being worried and new quest

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2025

I'm so lost and scared! I have taken a PET scan and an MRI. It's suspicious...

https://connect.mayoclinic.org/comment/1394166/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

HI - Has anyone received the HistoTripsy treatment --> In our case, my father , around...

https://connect.mayoclinic.org/comment/1243011/

Discussion: Has anyone out there tried Histotripsy for tumors in the liver?

Support Group: Liver Cancer

Posted: Feb 22, 2025

I go to Moffitt in Tampa. I get santosattan. (sp) I have 23 tumors on my...

https://connect.mayoclinic.org/comment/881449/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

My primary tumors removed have over 20 in liver they have been stable for over 4...

https://connect.mayoclinic.org/comment/303700/

Discussion: NETs, Toilet Paper, a rant and a little humor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2020

No on bland embolization, did not try lanretide, been on octreotide for 1 yr. had 4...

https://connect.mayoclinic.org/comment/1037570/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2024

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