Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

I’ve been dealing with PGL1 for over 25 years - had multiple surgeries and had been...

https://connect.mayoclinic.org/comment/1407006/

Discussion: Several inoperable paragangliomas, on lanreotide, now big mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2025

Centrist? Are you meaning Mesentery maybe? So both you and your husband have Neuroendocrine cancer? What...

https://connect.mayoclinic.org/comment/1306138/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2025

I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome.....

https://connect.mayoclinic.org/comment/1233965/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It...

https://connect.mayoclinic.org/comment/1105243/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2024

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including...

https://connect.mayoclinic.org/comment/1534540/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24 3:57pm

@mdethardt: Sorry to learn of your disappointing experiences. NETS presents differently in patients and requires a...

https://connect.mayoclinic.org/comment/1356548/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

Thank you!!! Right I’m four years strong in this now. I go to Georgia Cancer Specialist...

https://connect.mayoclinic.org/comment/1271324/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2025

@jutebox42: I am just like you trying to lead a positive life even with a terminal...

https://connect.mayoclinic.org/comment/1252912/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 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

Doctors are only human and do their best. With a less common condition like NET even...

https://connect.mayoclinic.org/comment/1373419/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 18, 2025

That chart is for a general oncologist as far as I am concerned. I have a...

https://connect.mayoclinic.org/comment/1351918/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2025

Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas...

https://connect.mayoclinic.org/comment/1304507/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2025

Hello. My husband was diagnosed with grade 1 stage 4 NET last year, with primary tumor...

https://connect.mayoclinic.org/comment/1283983/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

I’m sorry you’re going through this. My husband had the same surgery except for the liver...

https://connect.mayoclinic.org/comment/992356/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2024

I was diagnosed in April 2025 after months of diarrhea and heartburn, 2x colonoscopy/endoscopy, and a...

https://connect.mayoclinic.org/comment/1393584/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

I honestly have no idea but you should reach out to Mayo and see if they...

https://connect.mayoclinic.org/comment/1392724/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Hi Joy, each case of NET is different. I can share our case to give you...

https://connect.mayoclinic.org/comment/952987/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

@joy5877 - I just had my 7th Lan injection. First one was the worst! My experience...

https://connect.mayoclinic.org/comment/940665/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

HI, I'm new to this site. In 2016 I had a bowell blockage that turned out...

https://connect.mayoclinic.org/comment/748393/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2022

@tiambeth70: You have found a good source of information, both from Mentors and NET peers going...

https://connect.mayoclinic.org/comment/1507074/

Discussion: Husband has miliary seeding metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16 9:05am

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