Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

My husband has had high chromagranin A for years. They think from neuroendocrine cancer but have...

https://connect.mayoclinic.org/comment/802160/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

@terlato I was also diagnosed with POTS my recent emergency laparoscopy showed intestines adhesions and more...

https://connect.mayoclinic.org/comment/797793/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

Many thanks for your concise response - I am posting on behalf of my wife Sharon:...

https://connect.mayoclinic.org/comment/792326/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage,...

https://connect.mayoclinic.org/comment/782928/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2022

Hi @casualsuman and @sanjaykumar1. It looks like you may have created 2 accounts - Perhaps son...

https://connect.mayoclinic.org/comment/761776/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2022

You asked about the best test. A blood test can measure chromogranin A (CgA) levels. It...

https://connect.mayoclinic.org/comment/753409/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

To @hopeful33250 Many thanks - I offer the following responses: 1. We have reviewed the C.F.C....

https://connect.mayoclinic.org/comment/745158/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

Many thanks for your response. I offer the following brief summary of Sharon's NET history. 1....

https://connect.mayoclinic.org/comment/744920/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

My dear friend has had the 4 PRRT. She was ready to quit after 3 because...

https://connect.mayoclinic.org/comment/732819/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2022

Hi @tracyfurtiscaudle In August you posted about your high Chromogranin A level and you were trying...

https://connect.mayoclinic.org/comment/643406/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2021

What’s POTS? I’m still being observed for NETs because of high Chromogranin A levels. I’ve had...

https://connect.mayoclinic.org/comment/634707/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2021

Hello @tracyfurtiscaudle and welcome to Mayo Clinic Connect. You have certainly done a lot of research...

https://connect.mayoclinic.org/comment/624927/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2021

Thank you, Tracy! Wow - 1600! My last level was in the 500s. However, I just...

https://connect.mayoclinic.org/comment/624706/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2021

@dbmenger, What great news that the Gallium scan showed no new tumors! I have had three...

https://connect.mayoclinic.org/comment/610100/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2021

Teresa, Thanks! He ordered a couple of repeat CT scans, had many of my previous images...

https://connect.mayoclinic.org/comment/271263/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2019

Hello Ben, (@benr) and welcome to Mayo Connect. I'm so glad that you posted about your...

https://connect.mayoclinic.org/comment/255396/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2019

@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

I am 65 years old. Sure sounds like you've been through a lot. I was taken...

https://connect.mayoclinic.org/comment/1078563/

Discussion: Anyone diagnosed with NET, Grade II of the esophagus/stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2024

Thank you! Sorry for my english, I am spanish. Can I ask you how old were...

https://connect.mayoclinic.org/comment/1054503/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

Hi jestjohn, I’d be interested to know the results of your Dec. 15, 2023 PET scan....

https://connect.mayoclinic.org/comment/1015601/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2024

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