Neuroendocrine Tumors (NETs) Support Group

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Comments (2,368)

I also have been diagnosed with liver NETS here in Panama. My oncologist started me on...

https://connect.mayoclinic.org/comment/1539378/

Discussion: Does anyone have neuroendocrine small cell carcinoma of the liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 8:18am

I had severe stomach pain for years, VA doctor gave me acid reflux medicine and been...

https://connect.mayoclinic.org/comment/879728/

Discussion: Adenocarcinoma with Neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

My wife was diagnosed with NET with mass on tail of pancreas, and too many tumors...

https://connect.mayoclinic.org/comment/866558/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

I was diagnosed with a 2 cm grade 2 with Ki67 4% in the terminal ileum....

https://connect.mayoclinic.org/comment/1365552/

Discussion: 14 CM PNET w/ one year post resection. When will I see reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2025

Thought I would give an update. I just made several trips to Mayo in Rochester. I...

https://connect.mayoclinic.org/comment/1248641/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2025

@dbjoyce Agree! I had a small bowel obstruction in 2022, pathology confirmed SB NETS & 4...

https://connect.mayoclinic.org/comment/1556240/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

@briana311 I was diagnosed two years ago. The primary was near my small intestine. The biopsy...

https://connect.mayoclinic.org/comment/1530719/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 12:17pm

If the cancer has not metastasized and they are willing to do the surgery it is...

https://connect.mayoclinic.org/comment/1088907/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2024

I went on to Ocreotide The first 3 injections I had side effects that weren’t so...

https://connect.mayoclinic.org/comment/868253/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2023

I had PRRT for metastatic tumors in my liver. The plan is no treatment until they...

https://connect.mayoclinic.org/comment/1060197/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

@ggiinnaa I have been on chemo for over three years to shrink and control my NET...

https://connect.mayoclinic.org/comment/1427505/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

@dbamos1945 Hi again - re: close to the portal vein question - I had a bland...

https://connect.mayoclinic.org/comment/1410591/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

For lesions in section 5 and 8 of the liver, can you compare surgery vs SBRT...

https://connect.mayoclinic.org/comment/1311640/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 24, 2025

They could not determine the primary or origin. Pet scan only lit up in the liver...

https://connect.mayoclinic.org/comment/1306214/

Discussion: Tumor w/ minor grow with no Octreotide & larger growth w/ the shot

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2025

I don't know why they said liver?? I have not been on anything for my stomach....

https://connect.mayoclinic.org/comment/1239487/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2025

Yes the oncologist sent me to palliative care but I really hate pain pills. They just...

https://connect.mayoclinic.org/comment/718894/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Jun 19, 2022

I have metastatic liver NETs (secondary to pancreatic), have been on the shot for a year...

https://connect.mayoclinic.org/comment/927801/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 10, 2023

FWIW my wife, with a grade 2 stage 4 PNET with a large tumor on her...

https://connect.mayoclinic.org/comment/1320704/

Discussion: PNET in Tail of Pancreas, Portal and Splenic Veins

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2025

Day 4 update - as she transitioned from ice chips to Italian ice and Apple juice,...

https://connect.mayoclinic.org/comment/821091/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

Hi Joni, Hope you were able to get more of your questions answered during your zoom...

https://connect.mayoclinic.org/comment/670199/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2022

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