Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

Is your Oncologist team checking your ChromograninA with monthly blood tests? What are those result numbers?

https://connect.mayoclinic.org/comment/922661/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

Hello @cinephile10 and welcome to Mayo Connect. I see that @dbamos1945 has responded to your post...

https://connect.mayoclinic.org/comment/1461292/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2025

@cinephile10: ChromograninA results can vary and 1350 is certainly questionable. I have heard this test result...

https://connect.mayoclinic.org/comment/1460872/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2025

Sanjaykumar1: I have broached the subject of how patients can evaluate what the RISE or FALL...

https://connect.mayoclinic.org/comment/796364/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

My husband did great with the PRRT 4 treatments. He never had any scans orMRI to...

https://connect.mayoclinic.org/comment/1048898/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2024

Mutilple opinions are good. My Nuendocrine tumor has reappeared after 21 years. I had the localized...

https://connect.mayoclinic.org/comment/1542095/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 1:52pm

@dadcue Hello Mike, Your imaging sounds a lot like mine from several months ago. If you...

https://connect.mayoclinic.org/comment/1540119/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 7:21am

@eesnerd and @hopeful33250 Thank-you both for your responses. My Serotonin and Chromogranin A levels are only...

https://connect.mayoclinic.org/comment/1540803/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 4:57am

@hopeful33250 thanks so much for checking in. I haven’t had any follow up since the summer...

https://connect.mayoclinic.org/comment/1495067/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31 1:47pm

rhb18 Patients with NET's are compared to zebras for a good reason. After completing 4 PRRT...

https://connect.mayoclinic.org/comment/1517029/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1 8:44am

@hopeful33250 I guess it can take up to 14 days to get a serotonin level back...

https://connect.mayoclinic.org/comment/1515243/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26 3:58pm

@hopeful33250 Should I start to worry??? Other labs are pending. The capsule endoscopy is being scheduled...

https://connect.mayoclinic.org/comment/1510518/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20 1:30pm

Hello, good afternoon. I've read about your experience. I just wanted to clarify that medications for...

https://connect.mayoclinic.org/comment/1499490/

Discussion: Someone can help?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 11:47am

@eesnerd How was your diagnosis confirmed? I get abdominal CT-scans every year to monitor my kidney...

https://connect.mayoclinic.org/comment/1522327/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8 9:54am

@meleve I can understand the anxiety. It's good that the chromogranin level has been normal. I...

https://connect.mayoclinic.org/comment/1495148/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31 3:20pm

I have never had symptoms. My NET's were discovered accidentally during a CT scan when they...

https://connect.mayoclinic.org/comment/1522305/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8 9:21am

@jlsgt Thank you for your thoughtful response, I really appreciate you sharing your experience. I’ve had...

https://connect.mayoclinic.org/comment/1495998/

Discussion: Someone can help?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1 11:18pm

Getting ready for my first PRRT treatment in August for stage IV primary gastric tumor with...

https://connect.mayoclinic.org/comment/1358080/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

That will definitely have an impact on the chromogranin test results. Because of that, many net...

https://connect.mayoclinic.org/comment/1331954/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2025

A high chromogranin A can mean a lot of things. It can be high because of...

https://connect.mayoclinic.org/comment/1260836/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2025

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