Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

Thank you Teresa for the link to the Carcinoid Foundation. My symptoms were: blood in urine...

https://connect.mayoclinic.org/comment/267671/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 6, 2019

Stay positive! My husbands liver tumors have been as big as 9 cm ..up and down...

https://connect.mayoclinic.org/comment/1029025/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2024

TY. Interesting my oncologist didn't comment on replacing my liver as I have a similar situation...

https://connect.mayoclinic.org/comment/952673/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

Kaw627: It seems your NET experience is very similar to mine. I am very interested in...

https://connect.mayoclinic.org/comment/948956/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2023

I’m stage IV grade 2. Neuroendocrine, Primary in small intestine, metastatic to liver and other areas....

https://connect.mayoclinic.org/comment/812339/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

My husband takes Creon for his diarrhea even though his tumors are mostly in his liver....

https://connect.mayoclinic.org/comment/1325333/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2025

I had my 42nd lanreotide injection recently I’ve only had lethargy for a few days or...

https://connect.mayoclinic.org/comment/1196625/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Hello @kim1965 I'm glad that you were able to read the experience of @outlawcancer in order...

https://connect.mayoclinic.org/comment/817613/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

@tomrennie, how are you doing? Your case is similar to my wife’s. Our team is recommending...

https://connect.mayoclinic.org/comment/1038369/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2024

Can’t say enough about the CAP/TEM chemo option. For my wife it resulted in approximately a...

https://connect.mayoclinic.org/comment/1255694/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

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

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

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

@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

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