Neuroendocrine Tumors (NETs) Support Group

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Comments (2,366)

Getting ready for my first PRRT treatment in August for stage IV primary gastric tumor with...

https://connect.mayoclinic.org/comment/1358080/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

Hello, @aliciabusiness5, and welcome to Mayo Connect. I you are dealing with lung NETs as well...

https://connect.mayoclinic.org/comment/1266869/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

The last info I saw was for now only 4 or less tumors can be treated...

https://connect.mayoclinic.org/comment/1193160/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2024

We received a 2nd opinion from Dr.Lui in June 24, regarding having back fusion surgery with...

https://connect.mayoclinic.org/comment/1142516/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

I have heard of cases in excess of 20 years on SSA. I Believe Lano is...

https://connect.mayoclinic.org/comment/1011808/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

I was told surgery was not an option and I did not press for further explanation,...

https://connect.mayoclinic.org/comment/1000130/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also...

https://connect.mayoclinic.org/comment/905728/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2023

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272927/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

@harley4650 So sorry to hear about the progression. What about the newly approved histotripsy procedure for...

https://connect.mayoclinic.org/comment/1047144/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2024

I also have Carcinoid Syndrome, PET scan shows it started in the small intestines and metastasized...

https://connect.mayoclinic.org/comment/878862/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

Hi, I was recently diagnosed with, carcinoid syndrome, the tumors (NET) started in my small intestine...

https://connect.mayoclinic.org/comment/815553/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2023

I was on lanreotide now on octreotide and yesterday my MRI showed my tumors are still...

https://connect.mayoclinic.org/comment/741450/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 25, 2022

Thank you for posting all this information. I know we will have to see the Dr....

https://connect.mayoclinic.org/comment/1224998/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

Hello @tereh, I hope you get some information to make you more comfortable with your treatment...

https://connect.mayoclinic.org/comment/1218874/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

Welcome @kate777, I can imagine that your terrified that Merkel cell may have spread. Spots on...

https://connect.mayoclinic.org/comment/777248/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

Linda, Awesome - thank you for sharing. This is good information, and I did find a...

https://connect.mayoclinic.org/comment/1357269/

Discussion: New PNET Question Re: Surgery (I'm in bit of a pickle)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

I appreciate you adding information about your journey with NETs to this discussion group, @quinnie2023. I'm...

https://connect.mayoclinic.org/comment/1166556/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2024

Hello Elenor, I too was diagnosed with grade 1 stage 4 NET colon cancer in September....

https://connect.mayoclinic.org/comment/1283867/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

Here is an example as to why a NET specialist is necessary. My husband had an...

https://connect.mayoclinic.org/comment/917235/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2023

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

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