Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,549 total results

Comments (2,336)

I have Neuroendocrine tumors (small intestine metastases to liver). My treatment for the last year is...

https://connect.mayoclinic.org/comment/1017449/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2024

This is a great news! Looks like Lanreotide is keeping the growth in check! I just...

https://connect.mayoclinic.org/comment/937359/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

45 year old male(husband)$ diagnosed with Pcan. Stage IV, metastatic to lungs and liver. Starting chemo...

https://connect.mayoclinic.org/comment/1314101/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 27, 2025

I wish to join a group with NET Pancreas with multiple Secondaries in Liver, and on...

https://connect.mayoclinic.org/comment/1294836/

Discussion: I’m living with Pancreatic Neuroendocrine Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2025

I tolerated CAPTEM very well for 5 months and only went off it when there was...

https://connect.mayoclinic.org/comment/1358618/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

I had one in my colon 12 yrs and surgery ago now in the breast surgery...

https://connect.mayoclinic.org/comment/945075/

Discussion: Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 9, 2023

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First...

https://connect.mayoclinic.org/comment/914810/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

I have neuroendocrine cancer that had metastasized to my liver when diagnosed. I have had this...

https://connect.mayoclinic.org/comment/847070/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

I too have a lot of itching and as weird as it sounds my ears itch...

https://connect.mayoclinic.org/comment/1386144/

Discussion: Why do almost none of the sites online mention severe itching?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Links, Sounds like you have what I have. Mine started in my Pancreas and is in...

https://connect.mayoclinic.org/comment/807256/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

@ahtaylor My wife’s primary tumor was a mass on the pancreas tail. Our initial findings of...

https://connect.mayoclinic.org/comment/828363/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

My wife has similar mass on her pancreas, we are 9 cycles into chemotherapy (pill version)...

https://connect.mayoclinic.org/comment/802019/

Discussion: NET in body of pancreas: What are my treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

Hello! I have been diagnosed with pNET similarly (15×4.9×16cm) at the same time as endometrial cancer...

https://connect.mayoclinic.org/comment/1429987/

Discussion: Treatment options for a Mixed Adenoneuroendocrine Carcinoma (MiNEN)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Hi GAP, Last May 2022 I had a lung NET removed with the right upper lobe...

https://connect.mayoclinic.org/comment/802258/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

Last April he had a ct scan for stomach pain. Was then diagnosed with stage 4...

https://connect.mayoclinic.org/comment/1219890/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

Hello, I just finished my third round of Lutathera treatment. Each treatment takes 5-6 hrs, no...

https://connect.mayoclinic.org/comment/942546/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

Hello @tomatlanta, I appreciate you sharing about your wife's journey with a NETs diagnosis. Everyone's journey...

https://connect.mayoclinic.org/comment/877795/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2023

I did the watch and wait for a small (1cm) PNET on the head of my...

https://connect.mayoclinic.org/comment/815227/

Discussion: Cough ! What could it be?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2023

@hopeful33250 Results from my Dotatate Scan are back. It doesn't seem so good but it probably...

https://connect.mayoclinic.org/comment/1539723/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 2:02pm

In May of 2024 I had 5 tumors worked on (in my liver) (I was told...

https://connect.mayoclinic.org/comment/1195158/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2024

Follow

8137

3 hours ago

Follow

1116

3 hours ago

Digestive Health

Follow

18220

8 hours ago

Cancer: Managing Symptoms

Follow

5609

8 hours ago

Visiting Mayo Clinic

Follow

6725

8 hours ago