Neuroendocrine Tumors (NETs) Support Group

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Comments (271)

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks...

https://connect.mayoclinic.org/comment/753325/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

Hi My husband has a similar situation. He was diagnosed last March with a grade 1,...

https://connect.mayoclinic.org/comment/1216829/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19 5:32pm

Dianamontsno your question is relative. It depends on your symptoms. I’m no MD, but will share...

https://connect.mayoclinic.org/comment/812932/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2023

Hello. Anyone out there diagnosed with grade one tumor of small intestine? I had section of...

https://connect.mayoclinic.org/comment/813197/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2023

@Kathleenandbob: Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but...

https://connect.mayoclinic.org/comment/970018/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

Hi there Vinnie, I was recently diagnosed with the same, metastasized to liver. Did you have...

https://connect.mayoclinic.org/comment/903584/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET...

https://connect.mayoclinic.org/comment/922667/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

Thank you so much for the responses! I have been out of pocket and just now...

https://connect.mayoclinic.org/comment/167648/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2017

I think we are all given a variety of answers depending on? (not sure what), but...

https://connect.mayoclinic.org/comment/952689/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

Hello @stevestenberg31, I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion...

https://connect.mayoclinic.org/comment/829489/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

Hi! Thank you for sending the article, this is the one I had read and found...

https://connect.mayoclinic.org/comment/948561/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2023

Hello All I too have Neuroendocrine carcinoma that started in my small intestine and metastatic to...

https://connect.mayoclinic.org/comment/797748/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

My primary NET was in the small intestine lining—did not show up in any scans. I...

https://connect.mayoclinic.org/comment/918263/

Discussion: Thank you for your words of encouragement on this journey! Now ???

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2023

UPDATE: On January 28 I had surgery. 27cm of the small intestine was removed and 15cm...

https://connect.mayoclinic.org/comment/329142/

Discussion: Small bowel NET and colon cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2021

Thanks for sharing, my experience was very similar (see below) additionally they removed the right side...

https://connect.mayoclinic.org/comment/1236619/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14 9:11am

Same here. Had colon cancer and had all my large intestine removed 3 yrs ago now...

https://connect.mayoclinic.org/comment/232851/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Feb 6, 2019

@isaiah5417nt, when I had a blockage in my small intestine in 2018, they also found one...

https://connect.mayoclinic.org/comment/835728/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

I’m so glad you reached out to us with your swelling concerns. My treatment of Somatuline...

https://connect.mayoclinic.org/comment/883717/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

I’m having similar problems and am no sure whether it’s the lanreotide or the 15” removed...

https://connect.mayoclinic.org/comment/858717/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

Hi. I too am on a watch and wait recommendation and am very uncomfortable with that....

https://connect.mayoclinic.org/comment/848478/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

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