Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

My PCP ordered a 5HIAA based on his opinion that I have carcinoid syndrone. It came...

https://connect.mayoclinic.org/comment/721534/

Discussion: Looking for neuroendocrine tumor (NET) with carcinoid syndrome support

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2022

POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system...

https://connect.mayoclinic.org/comment/635178/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2021

I am currently taking a histamine blocker for my facial flushing & GI issues. The high...

https://connect.mayoclinic.org/comment/625071/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2021

My hair has been exiting my scalp. My husband thinks it’s because I’ve had three Gallium...

https://connect.mayoclinic.org/comment/624830/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2021

Hi, there. Be calm. My Chromogranin A levels were 504 on my last blood test. HIAA...

https://connect.mayoclinic.org/comment/614114/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2021

Help! I had a lobectomy for a spindle-cell sarcoma in 2016. Because I was having flushing...

https://connect.mayoclinic.org/comment/609880/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2021

@musicflowers4u I'm so glad that you posted again about your test results. You must be relieved...

https://connect.mayoclinic.org/comment/308782/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

Hi Ipate. Sorry to here of your multiple problems. I did not have any problems and...

https://connect.mayoclinic.org/comment/317669/

Discussion: Could I have NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

Hello @tammyd and welcome to the NETs support group on Mayo Connect. After having surgery three...

https://connect.mayoclinic.org/comment/1128481/

Discussion: My Chromogranin numbers are high. What is a more accurate test?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

My husband has a no functional pnet with negative blood work so I’m not as familiar...

https://connect.mayoclinic.org/comment/1048909/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2024

Looks like my first tests were done on my biopsies and then had follow up blood...

https://connect.mayoclinic.org/comment/1042936/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2024

Hello @maymaria and welcome to Mayo Connect. I can certainly understand your concern about your daughter....

https://connect.mayoclinic.org/comment/982471/

Discussion: Appendiceal Neuroendocrine Tumor: any experiences to share?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2023

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level...

https://connect.mayoclinic.org/comment/893988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

Chromogranin is a fairly reliable biomarker used to monitor patients with neuroendocrine cancers. Mine was up...

https://connect.mayoclinic.org/comment/882094/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

My Chromogranin A was 1507 last year and the PET was negative. In February I was...

https://connect.mayoclinic.org/comment/880883/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

My wife has (and has had for more than a year) Chromogranin A levels of 2000...

https://connect.mayoclinic.org/comment/825676/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2023

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Hello @freeangel and welcome to Connect. I can't imagine what it would be like to read...

https://connect.mayoclinic.org/comment/277062/

Discussion: I am not ok with this at all

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2019

The specialist I saw at Iowa, Dr Dillon, is in the same clinic as the Drs....

https://connect.mayoclinic.org/comment/137538/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2017

Hey Jessie, the 3 PET's were over the span of at least 5 years. When they...

https://connect.mayoclinic.org/comment/1277893/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2025

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