Neuroendocrine Tumors (NETs) Support Group

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Comments (933)

I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five...

https://connect.mayoclinic.org/comment/1142526/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

I’ve had 5 lanreotide shots and side effects less each time. Bloating is certainly one of...

https://connect.mayoclinic.org/comment/864105/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2023

I have a very similar situation. ( you can look at my posts). But, in short...

https://connect.mayoclinic.org/comment/1294154/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

When my NET was diagnosed I was seeing an oncologist who immediately recommended chemo. At age...

https://connect.mayoclinic.org/comment/1030379/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

Hello. Just wanted to share that I did have liver mets that they thought were hemangiomas...

https://connect.mayoclinic.org/comment/749213/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2022

Have had PRRT as well as distal pancreatectomy, but my tumors were quite visible. I can...

https://connect.mayoclinic.org/comment/1364303/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2025

Hi I agree with this "wait" approach as well. My husband was diagnosed last year with...

https://connect.mayoclinic.org/comment/1350282/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Thank you. The following finding (along with symptoms) caused the treatment with Lanreotide: “Non Specific mild...

https://connect.mayoclinic.org/comment/1312736/

Discussion: Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

I was diagnosed with stage 4 advanced NET s primary in the small bowels, and metastasized...

https://connect.mayoclinic.org/comment/1112552/

Discussion: GI Net stage 4 advanced: Is it incurable?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2024

You should ask your doctor first to test your Serotonin levels when they do your 28...

https://connect.mayoclinic.org/comment/1357948/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

I should mind my own business However! I have had 4 different options if there is...

https://connect.mayoclinic.org/comment/1028520/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2024

The only effect I have with carcinoid syndrome is flushing heat , my face and ears...

https://connect.mayoclinic.org/comment/843667/

Discussion: Differentiating Carcinoid syndrome from MCAS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2023

Hi Teresa, Thank you for your interest. One problem that delayed diagnosis of the tumor (for...

https://connect.mayoclinic.org/comment/795635/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2023

Thanks @helpful33250 (great name) I just had my first shot of Lanreotide on 08/18 and yes,...

https://connect.mayoclinic.org/comment/921461/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 30, 2023

Hello! I was diagnosed with pNET last december (2022). Grade 2 stage 4. Had surgery on...

https://connect.mayoclinic.org/comment/896311/

Discussion: More info on gastric NET w/liver mets and progression of symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

Hi Teresa, we’re happy to share our experience. In late July of last year Jim began...

https://connect.mayoclinic.org/comment/885097/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2023

@andy2020 My wife is also taking the Cape and Temoz, in the pill version. She has...

https://connect.mayoclinic.org/comment/810994/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

I too am looking for some feedback on how others deal with NET. I've had PRRT...

https://connect.mayoclinic.org/comment/1190158/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2024

My experience: After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to...

https://connect.mayoclinic.org/comment/1061064/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Morning! My primary was on my ilieum which metastasized to my liver and pancreas. I was...

https://connect.mayoclinic.org/comment/897949/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2023

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