Neuroendocrine Tumors (NETs) Support Group

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Comments (185)

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

Hello. My husband was diagnosed last year with grade 1, stage 4, small bowel NET. He...

https://connect.mayoclinic.org/comment/1415518/

Discussion: How can test be so different?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Constipation used to be my problem until obstruction started. Used to be impacted. I take restoralax...

https://connect.mayoclinic.org/comment/1404199/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Sep 29, 2025

Hi . I have small bowel net and did start on creon due to pale stools...

https://connect.mayoclinic.org/comment/1050394/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

Hello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small...

https://connect.mayoclinic.org/comment/1295494/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

UPDATE... NET specialist says I'm lucky. And rare as my SBNETs does not seem to have...

https://connect.mayoclinic.org/comment/1224979/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

Most people have replied about CgA. I live in Uk and have grade 1, small bowel...

https://connect.mayoclinic.org/comment/1091150/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2024

@marshae Most of us who have had digestive tract surgery find that the advice, "...eat anything...

https://connect.mayoclinic.org/comment/1404161/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Sep 29, 2025

I don’t want to scare you, but it was painful 5 hour surgery. I was hospitalized...

https://connect.mayoclinic.org/comment/1309905/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2025

Wow, there are many comments here that actually don't pertain to my post. But I will...

https://connect.mayoclinic.org/comment/1500025/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7 8:38am

Take a deep breath. There are lots of treatments for this cancer. I also have a...

https://connect.mayoclinic.org/comment/1219584/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

There are doctors that specialize in NETs care. There are surgeons that specialize in NETs surgery....

https://connect.mayoclinic.org/comment/1204232/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

I appreciate your sharing this experience, @musicflowers4u. I'm glad to hear that you don't have any...

https://connect.mayoclinic.org/comment/102049/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2019

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

Hopefully there is someone out there still monitoring this. I have chronic NET that started in...

https://connect.mayoclinic.org/comment/1171106/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Hello, @riffieli Thank you for sharing this with us and let me tell you this, no...

https://connect.mayoclinic.org/comment/789572/

Discussion: Carcinoid tumor of the appendix.PET scan results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2022

@tomrennie I’m curious about how your bones were diagnosed. My net was small bowel and ovary...

https://connect.mayoclinic.org/comment/1478868/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 11:48am

Hi everyone, I had my whipple done on May 2020 for Gastrinoma PNET. Since July 2024...

https://connect.mayoclinic.org/comment/1149137/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2024

@splendrous, my oncologist is located at the Springfield Clinic Cancer Center. My oncology surgeon is located...

https://connect.mayoclinic.org/comment/1275161/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

To @tomewilson and All, I see that many of you have mentioned weight loss, difficulty eating,...

https://connect.mayoclinic.org/comment/275691/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2019

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