Neuroendocrine Tumors (NETs) Support Group

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Comments (323)

In March 2025 I was a healthy, active, 58 year old woman who hiked, biked, went...

https://connect.mayoclinic.org/comment/1480387/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12 10:13am

I don’t think so have you been diagnosed with gastrinomas? I have Pnets and have been...

https://connect.mayoclinic.org/comment/1509381/

Discussion: Can long-term octreotide therapy lower gastrin serum levels?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19 5:21am

@maeve115 thank you for replying. I'm hopeful my muscle aches will subside. Responses such as yours...

https://connect.mayoclinic.org/comment/1505455/

Discussion: What helps with muscle aches and weakness after Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14 9:37am

@gsm13161, Hope the cyberknife operation has kept your condition stable. With mets to spine, were you...

https://connect.mayoclinic.org/comment/947492/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2023

I know this is a bit of an older thread, but for those who had metastasis...

https://connect.mayoclinic.org/comment/842575/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

@outlawcancer I understand about insurance coverage. I would encourage you to learn as much as you...

https://connect.mayoclinic.org/comment/783164/

Discussion: Anyone out there have PNET experiences and outcomes to share?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2022

No. He has pnets. I know lung nets are a bit of different animal. In addition...

https://connect.mayoclinic.org/comment/1329069/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hello @llr9f and welcome to the NETs support group on Mayo Connect. I see that many...

https://connect.mayoclinic.org/comment/1286095/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

I am sorry to hear about your situation. I had a similar situation about 6 years...

https://connect.mayoclinic.org/comment/1285690/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2025

Sorry for you and your son! Don’t panic most of these pnets are treatable I hope...

https://connect.mayoclinic.org/comment/1285565/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2025

"Cutting it out is the only cure!!!!" I have been belittled with that statement many times....

https://connect.mayoclinic.org/comment/1276434/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2025

Dealing with Nets! Wow we are all different I learned as much as I could about...

https://connect.mayoclinic.org/comment/1190887/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Hi @hopeful33250 - nice to meet you. I am doing well. Most days are good -...

https://connect.mayoclinic.org/comment/1081629/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2024

Hi. Sorry it took me so long to reply. I traveled on Saturday to a NET...

https://connect.mayoclinic.org/comment/163157/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2017

@outlawcancer and @kim1965, you may also be interested in this related discussion: - What's recovery after...

https://connect.mayoclinic.org/comment/809309/

Discussion: Surgery of PNET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2023

I also have pnets on the tail end of my pancreas and liver I'm stage 4,,...

https://connect.mayoclinic.org/comment/801955/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

Yes, we are going to UCSD for treatment. It appears that it is a 5yr clinical...

https://connect.mayoclinic.org/comment/1341917/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2025

Hello @lanamarie, I would like to welcome you to the NETs support group on Mayo Connect....

https://connect.mayoclinic.org/comment/1277761/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2025

@tomrennie That is so great Captem worked for you. Do you mind sharing what stage pnets?...

https://connect.mayoclinic.org/comment/1273782/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

Okay this is where we are at now. My husband found out December 5th about his...

https://connect.mayoclinic.org/comment/1246998/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

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