Neuroendocrine Tumors (NETs): Discussions

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

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

@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

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

@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

@dadcue Hi Mike, how are you? With all due respect, my suggestion is that you go...

https://connect.mayoclinic.org/comment/1489884/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24 3:07pm

@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

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

@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

@gustavo1975 I agree i had a NET removed from my small intestine in 2004 now 21...

https://connect.mayoclinic.org/comment/1490529/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25 5:08pm

I like the idea of no treatment plan. Do I really want to get a work-up...

https://connect.mayoclinic.org/comment/1484112/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:15pm

I was diagnosed accidentally in November last year with stage 4 NET's after having a CT...

https://connect.mayoclinic.org/comment/1479087/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 3:43pm

Did your doctors do a Chromogranin A test to determine if you have high levels? That...

https://connect.mayoclinic.org/comment/1484142/

Discussion: Did anyone else have a long struggle to getting a NETs diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 5:06pm

Neuroendocrine Tumors (NETs) Support Group