Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

Hi everyone, I am newly diagnosed with a pancreatic NET, 11 cm in the body &...

https://connect.mayoclinic.org/comment/664794/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2021

My symptoms have lessened with a restricted diet-low histamine diet & gluten-free. Also, I continue to...

https://connect.mayoclinic.org/comment/643483/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2021

Does anyone but me have fluctuating high Chromogranin-A levels and normal HIAA-5 and Gallium scan results?...

https://connect.mayoclinic.org/comment/622607/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 2, 2021

Can you get the blood test done prior to meeting with your Endocrinologist? They would have...

https://connect.mayoclinic.org/comment/1484127/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:37pm

@wendymad, were you able to discontinue medication to retake the Chromogranin A (CgA) test? How are...

https://connect.mayoclinic.org/comment/1483367/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15 7:24pm

@rkklinger Thank you for your reply. My cancer is similar in that I first had a...

https://connect.mayoclinic.org/comment/1450639/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

Also, the result of a blood test, chromogranin A NG/mL, was very high (176.5 vs the...

https://connect.mayoclinic.org/comment/1345051/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2025

Hi. Thanks for all the information. My 5-HIAA Urine was 1.4 Calculated Total (E+NE) was 18....

https://connect.mayoclinic.org/comment/1333833/

Discussion: So many questions about wjether or not I have Carcinoid Cancer/NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2025

Nothing that large....chromagranin is the blood marker. I'm NOT an oncologist. Could be because he had...

https://connect.mayoclinic.org/comment/1333573/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2025

Chromagranin? Daily pill? Thank you

https://connect.mayoclinic.org/comment/1332278/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2025

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove...

https://connect.mayoclinic.org/comment/1332000/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2025

My chromogranin has been over 1200 for more than 3 years. Although I have been alarmed...

https://connect.mayoclinic.org/comment/1261911/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2025

Finding out you may have a net is a hard thing to deal with! Stay positive...

https://connect.mayoclinic.org/comment/1226616/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and...

https://connect.mayoclinic.org/comment/110438/

Discussion: Carcinoid Syndrome & Autoimmune Diseases.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 14, 2016

Wow, you've gone through a lot as well. I totally agree on the Famotidine. My chromogranin...

https://connect.mayoclinic.org/comment/1078626/

Discussion: Anyone diagnosed with NET, Grade II of the esophagus/stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2024

Hey! Can I ask you if you fin the cause of your high chromogranin levels? I...

https://connect.mayoclinic.org/comment/1075446/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2024

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

We took her to Apollo hospitals in Hyderabad. They did a chromogranin a test and that...

https://connect.mayoclinic.org/comment/941294/

Discussion: Mother might have neuroendocrine tumors, is being told she has IBS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent...

https://connect.mayoclinic.org/comment/923971/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2023

2590 chromagranin A, I know HIGH right. Dotatate scan positive area pancreas and octreo scan showed...

https://connect.mayoclinic.org/comment/896692/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

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