Neuroendocrine Tumors (NETs) Support Group

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Comments (86)

I also had Net in terminal ileum, well differentiated, ki-67 1%. First surgery in 2020 was...

https://connect.mayoclinic.org/comment/1554868/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

Hello @ericnjeffrey and welcome to the NETs support group on Mayo Connect. I am sorry to...

https://connect.mayoclinic.org/comment/1194294/

Discussion: Is there anything I can do for the bloating?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

Good luck to you! I have Stage IV carcinoid originally in my ileum, and now in...

https://connect.mayoclinic.org/comment/1150045/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2024

Hello @ericnjeffrey I too had surgery for a NET in my terminal ileum 11 years ago...

https://connect.mayoclinic.org/comment/1200500/

Discussion: Is there anything I can do for the bloating?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2024

You have been through a lot the past 6 weeks. I too had a NET 1.5...

https://connect.mayoclinic.org/comment/1221095/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2025

My net sounds similar except prior to surgery there was only one net in the ileum...

https://connect.mayoclinic.org/comment/1225355/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2025

hi I am from Far North Queensland Australia 3 years ago I found out I had...

https://connect.mayoclinic.org/comment/1312071/

Discussion: Any one have experience with Dr J Maxwell (surgical oncologist) at MD

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2025

@fraaseo Thank you for sharing. My second surgery was also cytoreduction with removal of 92 cm...

https://connect.mayoclinic.org/comment/1556271/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

I, too, have NET (Ileum), along with several METS. I have been going to Mayo since...

https://connect.mayoclinic.org/comment/134671/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2018

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First...

https://connect.mayoclinic.org/comment/914810/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

Hello. Thank you for sharing and thank you for the links, I’ll check them out soon....

https://connect.mayoclinic.org/comment/919842/

Discussion: Had CLL since 1996 & Now NETs-Anyone Else?

Support Group: Blood Cancers & Disorders

Posted: Aug 27, 2023

Hi my nets were found via ct scan after going into hospital for a uti. they...

https://connect.mayoclinic.org/comment/1437757/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 13, 2025

I am 2 weeks post op after small bowel resection. There was only the one tumor...

https://connect.mayoclinic.org/comment/1211186/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2025

When my cancer was found, and they removed the tumor in my ileum, this is what...

https://connect.mayoclinic.org/comment/1285797/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

No, I am not getting any treatment currently — just regular CT scans. And I did...

https://connect.mayoclinic.org/comment/825156/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum)...

https://connect.mayoclinic.org/comment/1203247/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

Thank you! Sorry for my english, I am spanish. Can I ask you how old were...

https://connect.mayoclinic.org/comment/1054503/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

@doonman I listened to a seminar from 2021 about NETs. One part struck me as being...

https://connect.mayoclinic.org/comment/1542684/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 12:12pm

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It...

https://connect.mayoclinic.org/comment/988900/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of...

https://connect.mayoclinic.org/comment/1065174/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

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