Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)....

https://connect.mayoclinic.org/comment/1035345/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

Is there a pet scan That cat scan the body to see if there are any...

https://connect.mayoclinic.org/comment/1022418/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

Many thanks for your response. I offer the following brief summary of Sharon's NET history. 1....

https://connect.mayoclinic.org/comment/744920/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

I too have Gastrinomas had a perforated esophagus had major surgery to repair it. They discovered...

https://connect.mayoclinic.org/comment/1286959/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2025

Hey Frogsong, They hadn’t heard back from the specialist yet, so they decided not to do...

https://connect.mayoclinic.org/comment/847612/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2023

Big hugs to you. I’m glad you are feeling better and have had some positive outcomes...

https://connect.mayoclinic.org/comment/846916/

Discussion: Who has had Distal Pancreatectomy and regretted it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

Hello @kate777 I'd like to join @colleenyoung and @char1962, in welcoming you to Connect. I've had...

https://connect.mayoclinic.org/comment/777407/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

I totally agree with what you are saying! My liver enzymes (ALT, AST) are almost double...

https://connect.mayoclinic.org/comment/1009304/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

I had surgery in 2018 for t-10 lesion but since have had cyberknife on additional spine...

https://connect.mayoclinic.org/comment/952169/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

How did your embolization go? I have grade 2 metastatic to the liver with no known...

https://connect.mayoclinic.org/comment/1364518/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2025

I am having the once per month injection of Octreotide (sp?). The drug has calmed my...

https://connect.mayoclinic.org/comment/1349207/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2025

When my cancer was found, and they removed the tumor in my ileum, this is what...

https://connect.mayoclinic.org/comment/1285797/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

I think foods high in "amines" can trigger carcinoid syndrome or similar effects. I have a...

https://connect.mayoclinic.org/comment/1231773/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

I am in Australia and waiting to see what the next step for me (lesion liver)...

https://connect.mayoclinic.org/comment/1089295/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2024

I go to the Mayo Clinic 2-4 times a year for followup. I also have carcinoid...

https://connect.mayoclinic.org/comment/85558/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

I just had scans on Monday. Everything is stable, and they even noted some shrinkage in...

https://connect.mayoclinic.org/comment/1123512/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2024

Allow me to be the acronym buster for this discussion: - SSA = Somatostatin analogue https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are...

https://connect.mayoclinic.org/comment/1001311/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

I was diagnosed with NET’s December, 2022. Started the same, small intestines and spread to the...

https://connect.mayoclinic.org/comment/842035/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

My experience on (Beta) PRRT was - tumours taking off, so they took me off PRRT....

https://connect.mayoclinic.org/comment/1408799/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2025

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