Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

756 total results

Comments (689)

@grange: Regarding your wife’s Lingering side-effects from Lutathera PRRT… I can tell you my response in...

https://connect.mayoclinic.org/comment/1498387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 10:49pm

Well we were surprised at the transplant option, our assumption was we get the NET to...

https://connect.mayoclinic.org/comment/994290/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

Hello @rit333 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1344225/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

I just finished PRRT for sm. Intestine NET primary w/ liver metastases. I choose 3mo follow-up...

https://connect.mayoclinic.org/comment/1211469/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2025

I would like to thank you I am on PRRT and my second treatment side effects...

https://connect.mayoclinic.org/comment/1116835/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2024

@kurtjazz01: I have Neuroendocrine cancer (sm intestine & liver met) and a year ago chose PRRT...

https://connect.mayoclinic.org/comment/1403182/

Discussion: So, now just still waiting, losing my mind being worried and new quest

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2025

Hello, I have a question regarding the wight loss after the PRRT treament. How much wight...

https://connect.mayoclinic.org/comment/948601/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2023

Hello Karen (@kjstein) Welcome to Mayo Clinic Connect! I am glad to hear that you have...

https://connect.mayoclinic.org/comment/713478/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2022

We sound very similar. Small bowel primary with mets to liver. Started octreotide after bowel resection....

https://connect.mayoclinic.org/comment/1218810/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

Hi @sonalisaha09 Im sorry your sister has to go through this. Is your sister's net a...

https://connect.mayoclinic.org/comment/1410592/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

I have 20 to 30 Mets to the liver. Have done PRRT, lanriotide, and captem. All...

https://connect.mayoclinic.org/comment/1336778/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 28, 2025

Our case also was stage 4 with too many tumors on liver to count. Not eligible...

https://connect.mayoclinic.org/comment/1106247/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 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

Hello, all! I had to look back, but in May 2023, after 3 rounds of PRRT,...

https://connect.mayoclinic.org/comment/965390/

Discussion: Questions about Blood Tests Results after PRRT treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2023

@mbg20 my primary oncologist is Dr Dar (primary office is in Leesburg, VA). Dar was recommended...

https://connect.mayoclinic.org/comment/820306/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

@nana120: I am sorry you are experiencing new tumors. Are you seeing a NET Oncologist with...

https://connect.mayoclinic.org/comment/1360091/

Discussion: Anyone on cabozantinib after Y90

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 30, 2025

I had a bout of embolization, but no cutting. The primary has not been touched at...

https://connect.mayoclinic.org/comment/1232981/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

@kim1965 Hi kim1965 A lot has gone on since my last post. My tumor is stage...

https://connect.mayoclinic.org/comment/837243/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

I know after the 2 treatments the team wanted to see if the PRRT treatments were...

https://connect.mayoclinic.org/comment/1469987/

Discussion: What is the Imaging Protocol Following Completion of PRRT Therapy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2025

I live in Canada: aside from having a Whipple / liver debulking in October 2023 and...

https://connect.mayoclinic.org/comment/1260313/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2025

Follow

8137

1 hour ago

Follow

1116

1 hour ago

Digestive Health

Follow

18220

6 hours ago

Cancer: Managing Symptoms

Follow

5609

6 hours ago

Visiting Mayo Clinic

Follow

6725

6 hours ago