Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Hi @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Hi Lenora, I am the leader of The Wisconsin Neuroendocrine Cancer Connection, a group of 163...

https://connect.mayoclinic.org/comment/668825/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2022

@californiazebra (Hit send by accident) the large 2.6 cm tumor was more likely to spread. I...

https://connect.mayoclinic.org/comment/1427894/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

I totally understand the desire for a conservative approach. While there is likely a primary somewhere,...

https://connect.mayoclinic.org/comment/1157998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2024

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but...

https://connect.mayoclinic.org/comment/1233382/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

@kristin3 -- typical carcinoids are the best kind to have. They are the slow growing kind....

https://connect.mayoclinic.org/comment/849473/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Apr 26, 2023

Hi @peggymariejackson as I mentioned in another one of your posts, I have lung NETs --...

https://connect.mayoclinic.org/comment/861009/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

We seem to go from home few weeks then back to hospital. He just got out...

https://connect.mayoclinic.org/comment/1377017/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2025

Hello @ristene and welcome to Mayo Connect, I am sorry to hear of this rare diagnosis....

https://connect.mayoclinic.org/comment/244177/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Hello Lanamarie. I am not far from you in New London, MN. I was diagnosed with...

https://connect.mayoclinic.org/comment/1278916/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2025

Good luck to your wife. I’ve had chemo too, but not the pill. Had injections every...

https://connect.mayoclinic.org/comment/810971/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

To all, I finish my 12th chemo yesterday I think the dr wanted to keep going...

https://connect.mayoclinic.org/comment/807633/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2023

I was diagnosed in 1993 by a doctor who performed a colonoscopy after heavy rectal bleeding....

https://connect.mayoclinic.org/comment/771371/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2022

Thank you Teresa. In August of 2019 I went to the ED for abdominal pain, after...

https://connect.mayoclinic.org/comment/257017/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2020

Hi I had an exceptional NET specialist who started me Lanreotide after 3 injections the side...

https://connect.mayoclinic.org/comment/847916/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2023

Bob, To provide some additional information. . . I have had 2 surgeries - a modified...

https://connect.mayoclinic.org/comment/806975/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

@splendrous, thanks for sharing your source of the second paragraph. I appreciate that you shared your...

https://connect.mayoclinic.org/comment/1346810/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2025

Hi @pammy229 I’m glad you decided to go to Mayo and will undoubtedly be hooked up...

https://connect.mayoclinic.org/comment/1198299/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi @mir123 Thanks for sharing your info. I understand there is little historical info to go...

https://connect.mayoclinic.org/comment/909352/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2023

Followup answer: My invasive surgery (I’m a relatively healthy 80 year old man) was for a...

https://connect.mayoclinic.org/comment/783340/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2022

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