Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

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

I am 65 years old. Sure sounds like you've been through a lot. I was taken...

https://connect.mayoclinic.org/comment/1078563/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2024

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

Hi jestjohn, I’d be interested to know the results of your Dec. 15, 2023 PET scan....

https://connect.mayoclinic.org/comment/1015601/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2024

Hello @emilyliz16 and welcome to Mayo Connect. Yes, a high Chromogramin level can be caused by...

https://connect.mayoclinic.org/comment/966652/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2023

You are right, @terryrandy5. The Chromogranin A results can be impacted by other meds, such as...

https://connect.mayoclinic.org/comment/930478/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2023

I'm 53 and have already had 2 parathyroid adenomas removed. Had on-again-off-again high gastrin (could be...

https://connect.mayoclinic.org/comment/888107/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2023

The doctor says the high chronogrininA means nothing but he ordered a PET Scan to be...

https://connect.mayoclinic.org/comment/883787/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Hi @peg152 It will be good for you to see a doctor who can look more...

https://connect.mayoclinic.org/comment/882407/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I...

https://connect.mayoclinic.org/comment/874619/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

If you don't mind sharing, how did you get your doctors to look for the mass...

https://connect.mayoclinic.org/comment/872269/

Discussion: Pheochromocytoma: Anyone being treated for an adrenal mass?

Support Group: Diabetes & Endocrine System

Posted: Jun 4, 2023

I had a follow up with the Oncologist earlier this week. I inquired about a NET...

https://connect.mayoclinic.org/comment/835888/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

@emma0444 I have copied our pathology report below for you. This is after surgery, after 9...

https://connect.mayoclinic.org/comment/835216/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

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

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

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

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

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

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

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

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