Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,550 total results

Comments (2,337)

Thankyou for asking, he’s doing well now, back to baseline after stopping his sandostatin injections. Just...

https://connect.mayoclinic.org/comment/1067948/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

Does the nausea start with the “CAP” portion or only with the “TEM”? His doctor has...

https://connect.mayoclinic.org/comment/884044/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

I have heard of cases in excess of 20 years on SSA. I Believe Lano is...

https://connect.mayoclinic.org/comment/1011808/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

I was told surgery was not an option and I did not press for further explanation,...

https://connect.mayoclinic.org/comment/1000130/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also...

https://connect.mayoclinic.org/comment/905728/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2023

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272927/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

Linda, Awesome - thank you for sharing. This is good information, and I did find a...

https://connect.mayoclinic.org/comment/1357269/

Discussion: New PNET Question Re: Surgery (I'm in bit of a pickle)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

I appreciate you adding information about your journey with NETs to this discussion group, @quinnie2023. I'm...

https://connect.mayoclinic.org/comment/1166556/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2024

Welcome @kate777, I can imagine that your terrified that Merkel cell may have spread. Spots on...

https://connect.mayoclinic.org/comment/777248/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

Here is an example as to why a NET specialist is necessary. My husband had an...

https://connect.mayoclinic.org/comment/917235/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2023

I was diagnosed in April 2025 after months of diarrhea and heartburn, 2x colonoscopy/endoscopy, and a...

https://connect.mayoclinic.org/comment/1393584/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

I'm so sorry you're going through this. My husband's story is similar to yours, but your...

https://connect.mayoclinic.org/comment/1330919/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Have you gotten opinions? I was diagnosed some 30 years ago with fatty liver disease. I...

https://connect.mayoclinic.org/comment/1213641/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2025

Thanks for the update. It is helpful to know how things evolve. So tumors were identified...

https://connect.mayoclinic.org/comment/1171377/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Hello Elenor, I too was diagnosed with grade 1 stage 4 NET colon cancer in September....

https://connect.mayoclinic.org/comment/1283867/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

@matt76 I have been there. I got progressively sicker over three years and lost over 100...

https://connect.mayoclinic.org/comment/1541843/

Discussion: neuro endocrine tumors in small bowel, omentum, on ovaries, appendix

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 9:32am

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It...

https://connect.mayoclinic.org/comment/988900/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

Please press about having gall bladder removed. I went to ER for another reason but found...

https://connect.mayoclinic.org/comment/1318595/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2025

I understand you have had neuroendocrine tumors for many years. Were you receiving any treatment prior...

https://connect.mayoclinic.org/comment/1171846/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

This is the first case of someone using this method I have seen on this Forum....

https://connect.mayoclinic.org/comment/1146038/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2024

Digestive Health

Follow

18223

8 minutes ago

Melanoma & Skin Cancer

Follow

1039

26 minutes ago

Follow

8140

35 minutes ago

Follow

1864

1 hour ago

Pancreatic Cancer

Follow

3541

2 hours ago