Neuroendocrine Tumors (NETs) Support Group

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Comments (86)

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in...

https://connect.mayoclinic.org/comment/800545/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2023

I would be curious to know what research you did that pointed you to Mayo? I...

https://connect.mayoclinic.org/comment/85560/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2017

@panorman3 My husband's tumor was found in 1995 between the illeum and bowell. 7 of 11...

https://connect.mayoclinic.org/comment/1542507/

Discussion: i am taking the shot "L"

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 8:50am

Endocrine tumors are difficult to diagnosed and in our opinion, difficult to treat. My husband was...

https://connect.mayoclinic.org/comment/1498542/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:36am

In 2005 I was diagnosed with neuroendocrine tumors in my ilium I had the primary tumor...

https://connect.mayoclinic.org/comment/1529589/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 7:20am

Hey Yes the CT was ordered because of suspected diverticulitis. But the net in my ilium...

https://connect.mayoclinic.org/comment/1010732/

Discussion: GI NET attached to pancreas supposedly non-producing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2024

lots! And trying to get my oncologist or surgeon to call is not working! I have...

https://connect.mayoclinic.org/comment/1003419/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

Hi @hopeful33250 and thanks for reaching out. I went to the hospital on August 30th with...

https://connect.mayoclinic.org/comment/942618/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

My metestatic carcinoid cancer was discovered by accident when my GYN was doing an endoscopic look...

https://connect.mayoclinic.org/comment/827308/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

I had a colonoscopy, the Doctor noticed what he called a polypoid. He took a biopsy...

https://connect.mayoclinic.org/comment/1264382/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2025

He has never had symptoms of carcinoid syndrome yet so we are hopeful there are no...

https://connect.mayoclinic.org/comment/137533/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2017

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

My wife (NETs) and I are very interested in nutrition. In 2015 and 2016 she had...

https://connect.mayoclinic.org/comment/275687/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2019

I haven’t been on to update as it seems like we got to the mountain but...

https://connect.mayoclinic.org/comment/1444451/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2025

Thank you for the link on eating. It was interesting. The surgery in 1995 was for...

https://connect.mayoclinic.org/comment/1397037/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2025

I agree with both previous posts. And I might also say that if you can get...

https://connect.mayoclinic.org/comment/1211094/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2025

So sorry for the delayed response. I wish I had some useful info for what you...

https://connect.mayoclinic.org/comment/1028476/

Discussion: I had a right hemicolectomy 6 days ago. What helps nausea?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2024

i just had surgery for a NET in my illeum (end of small bowel but surgeon...

https://connect.mayoclinic.org/comment/1022718/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

I had my right colon removed and small intestine removed 6 weeks ago due to chrons...

https://connect.mayoclinic.org/comment/1436511/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 12, 2025

Hi Carrie! I am do sorry to hear your news and I completely empathize with your...

https://connect.mayoclinic.org/comment/1073202/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

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