Neuroendocrine Tumors (NETs) Support Group

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

I'm 87 and my NET's were discovered accidentally on a CT scan for a hernia. I...

https://connect.mayoclinic.org/comment/1568759/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 7 7:57am

@bijou17 I'm new to neuroendocrine tumors (NET). I haven't had surgery to remove the NET although...

https://connect.mayoclinic.org/comment/1577754/

Discussion: CT Scan With Contrast showed "nothing" ... How common is this?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

I agree 100% with everything @dbamos1945 said. Here's some resource links to help you start educating...

https://connect.mayoclinic.org/comment/1563220/

Discussion: Chromogranin A level almost 1800!?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30 10:34am

@hammerhead225: The ChrimograninA blood test is only one of many tests our NET specialists use to...

https://connect.mayoclinic.org/comment/1562668/

Discussion: Chromogranin A level almost 1800!?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29 2:33pm

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

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

@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

@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

@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

Could you update when you check again your chromogranin levels, please?

https://connect.mayoclinic.org/comment/1077215/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 29, 2024

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

My oncologist has prescribed lanreotide but I haven’t started as my surgeon suggested I wait for...

https://connect.mayoclinic.org/comment/1033760/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024