Neuroendocrine Tumors (NETs) Support Group

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Comments (2,058)

I want to report in on my current situation. My GP referred me to a local...

https://connect.mayoclinic.org/comment/808662/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Hi Colleen. I was have Nets in my cecum, small intestines, lymph nodes, liver and heart....

https://connect.mayoclinic.org/comment/971488/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

My husband has G3 Stage 4 insulinoma, Primary in Pancreas and “Too many to count in...

https://connect.mayoclinic.org/comment/1047677/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2024

Well, love getting some good news! Mayo review of my local CT compared to Mayo scans...

https://connect.mayoclinic.org/comment/1018938/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2024

@helloitsme Lean on all of us for help, many of us have been on this journey...

https://connect.mayoclinic.org/comment/851636/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hello, thanks so much for your reply. I will research more about the scan you recommend...

https://connect.mayoclinic.org/comment/1219810/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23 1:31pm

I had 3 ER visits where there were a variety of inconclusive diagnosis. Not sure if...

https://connect.mayoclinic.org/comment/1173512/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

Definitely get a 2nd opinion & see a NETS surgical oncologist. Your symptoms are exactly like...

https://connect.mayoclinic.org/comment/1294227/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1 11:06am

@badi I'm a 59 year old female, and I, too, am Stage IV Carcinoid. My original...

https://connect.mayoclinic.org/comment/822156/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

@steven1953: I am sorry that you are dealing with the uncertainty of tumor progression. My situation...

https://connect.mayoclinic.org/comment/1110367/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

I’ve been receiving injections every 4 weeks since 12/22. I find the few days after the...

https://connect.mayoclinic.org/comment/919102/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

From @helloitsme: "My oncologist would not order a PET scan and said it was not needed...

https://connect.mayoclinic.org/comment/898364/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I also have insulinomas. . . Diagnosed originally in 2015 with 2 tumors in the pancreas,...

https://connect.mayoclinic.org/comment/867769/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Hi Mark, I am not familiar with the term ‘Type 2A’. Please help me. Is this...

https://connect.mayoclinic.org/comment/808571/

Discussion: PRRT has been approved by the FDA Jan 26, 2018, as expected

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Welcome Kate. You have my sympathy as you go through this time in your life. I...

https://connect.mayoclinic.org/comment/778015/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2022

Sophiarose, Octreotide is used to help manage the effects of neuroendocrine tumors such as flushing and...

https://connect.mayoclinic.org/comment/830230/

Discussion: Stopping Octreotide???

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

Hi, Great questions. I was 64. It was not a “choice” that was planned for in...

https://connect.mayoclinic.org/comment/950056/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2023

Hi @mmerry I am on the other side of this big country - Vancouver, and with...

https://connect.mayoclinic.org/comment/924566/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 5, 2023

Hi, I went through my part 2 of 3 of the embolization and the 3 tumors...

https://connect.mayoclinic.org/comment/767069/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Oct 29, 2022

Sorry to hear about your husband's pain during recovery. I had a modified whipple surgery, liver...

https://connect.mayoclinic.org/comment/817685/

Discussion: Has anyone had referred shoulder pain in post pancreatectomy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

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