Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

Yes, I have had 3 different upper GI's, as well as a colonoscopy. They were all...

https://connect.mayoclinic.org/comment/186247/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 26, 2018

Information I have seen recently says they do not go by Chromogranin A or use that...

https://connect.mayoclinic.org/comment/135491/

Discussion: The role of Tumor Marker Labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2017

I can relate to a little of this, Jenchaney -- I am a multifocal SiNET patient...

https://connect.mayoclinic.org/comment/135487/

Discussion: The role of Tumor Marker Labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2017

Has anyone heard anything about ISI labs possibly having a lot of false positives with their...

https://connect.mayoclinic.org/comment/102026/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2017

Hi @gaylejean. Thanks for sharing more of your treatment. I'm in the process of the 24...

https://connect.mayoclinic.org/comment/101999/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2016

Hi Sunshyn, may I knows 3 times PET scans within a period of how long? Any...

https://connect.mayoclinic.org/comment/1277034/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2025

What is your Chromogranin A level?

https://connect.mayoclinic.org/comment/1293708/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30, 2025

Even with normal chromogranin Pnet can be found??

https://connect.mayoclinic.org/comment/1221557/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2025

Followers of this discussion may also be interested in these related discussions: - High or Fluctuating...

https://connect.mayoclinic.org/comment/1050522/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

I am on large amounts of PPIs more than double the normal because of my functioning...

https://connect.mayoclinic.org/comment/1227155/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

Have you been diagnosed with a neuroendocrine tumor? As to your high chromogranon, do you take...

https://connect.mayoclinic.org/comment/1330156/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi there. The biopsy can only reveal the type of tumor. And I believe whether it...

https://connect.mayoclinic.org/comment/1345210/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2025

I had two lantreotide shots. They controlled my hot flashes and made me feel human but...

https://connect.mayoclinic.org/comment/1347584/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 13, 2025

I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy...

https://connect.mayoclinic.org/comment/805097/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and...

https://connect.mayoclinic.org/comment/802916/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

My chromogranin A level is continuously rising from 500 after operation to more than 9000 now...

https://connect.mayoclinic.org/comment/800062/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2023

I am new to Lanreotide injections - same as Somatuline Depot monthly injections I get for...

https://connect.mayoclinic.org/comment/792305/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Sharon Update: Her Chromogranin level in the most recent test was 164 (a big spike from...

https://connect.mayoclinic.org/comment/776375/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

@fightinghopefully, I can understand that this would have you concerned, especially if your doctor appeared shocked...

https://connect.mayoclinic.org/comment/756048/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022

Dear all, I was diagnosed with NET in 2017. Low grade. Non functional and asymptomatic. Until...

https://connect.mayoclinic.org/comment/755918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022

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