Neuroendocrine Tumors (NETs) Support Group

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Comments (368)

Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your...

https://connect.mayoclinic.org/comment/873777/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2023

It’s so hard to generalize one experience to others except as an example. In 2014-15, I...

https://connect.mayoclinic.org/comment/1001387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

@djchambers: I am sorry you are faced with this situation with NET cancer. Most of your...

https://connect.mayoclinic.org/comment/1418984/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2025

To people in the NorthEast Upstate Cancer Center now offers robotic surgery for Wipple procedure. Dr.Dhir...

https://connect.mayoclinic.org/comment/1001632/

Discussion: Need more information on NET in head of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2024

Hi Colleen, My cancer is neuroendocrine small cell carcinoma originating in the gut and metastases to...

https://connect.mayoclinic.org/comment/1071318/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20, 2024

Wow! Let me saw that I was treated like a rock star at Mayo in Jacksonville....

https://connect.mayoclinic.org/comment/770718/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2022

Hi there, fist off.. fellow Wisconsinite.....GoPackGo. back to the NETS. My hubs was diagnosed back in...

https://connect.mayoclinic.org/comment/1231196/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally...

https://connect.mayoclinic.org/comment/831438/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

Hi Teresa: I would be glad to share my journey with you and your followers. In...

https://connect.mayoclinic.org/comment/107245/

Discussion: Ga-68 for detecting NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2017

I think it took about 6 months. I went on feeding tube it was so bad...

https://connect.mayoclinic.org/comment/1601278/

Discussion: Radioembolization Is My Next Step

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18 8:14pm

@sposieneedshelp I was diagnosed 3 1/2 years ago with almost the same started in the small...

https://connect.mayoclinic.org/comment/1616982/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@dbjoyce I live in Cairns Australia and had net tumours removed from my ileum in 2022....

https://connect.mayoclinic.org/comment/1562928/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30 5:09am

My goodness this sounds miserable for you. My one suggestion would be read about Hyperparathyroidism, nothing...

https://connect.mayoclinic.org/comment/1073561/

Discussion: Lymphocytic Colitis, Diverticulosis, C deficile and a stage 1 NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2024

Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with...

https://connect.mayoclinic.org/comment/1072193/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

We thought since the endoscope was good and the colonoscopy was good. What are the odds...

https://connect.mayoclinic.org/comment/1003825/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to...

https://connect.mayoclinic.org/comment/901156/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

I found out 3 years ago that I have net cancer. Originated in small intestines and...

https://connect.mayoclinic.org/comment/848467/

Discussion: Differentiating Carcinoid syndrome from MCAS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

My dear friend has had the 4 PRRT. She was ready to quit after 3 because...

https://connect.mayoclinic.org/comment/732819/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2022

Hi! Thank you ❤️so much for all your reply’s. A lot of your questions and comments...

https://connect.mayoclinic.org/comment/1440546/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2025

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