Neuroendocrine Tumors (NETs) Support Group

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I'm 53 and have already had 2 parathyroid adenomas removed. Had on-again-off-again high gastrin (could be...

https://connect.mayoclinic.org/comment/888107/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2023

The doctor says the high chronogrininA means nothing but he ordered a PET Scan to be...

https://connect.mayoclinic.org/comment/883787/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Hi @peg152 It will be good for you to see a doctor who can look more...

https://connect.mayoclinic.org/comment/882407/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I...

https://connect.mayoclinic.org/comment/874619/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

If you don't mind sharing, how did you get your doctors to look for the mass...

https://connect.mayoclinic.org/comment/872269/

Discussion: Pheochromocytoma: Anyone being treated for an adrenal mass?

Support Group: Diabetes & Endocrine System

Posted: Jun 4, 2023

I had a follow up with the Oncologist earlier this week. I inquired about a NET...

https://connect.mayoclinic.org/comment/835888/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

@emma0444 I have copied our pathology report below for you. This is after surgery, after 9...

https://connect.mayoclinic.org/comment/835216/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

I have been ill. Wgt loss. Diarrhea, back pain. Nausea, cramping and my doc did Chromogranin...

https://connect.mayoclinic.org/comment/823464/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

My oncologist is affiliated with a "teaching" university. Follow up tests include Chromogranin testing and other...

https://connect.mayoclinic.org/comment/804687/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

Teresa: My wife Sharon has recently had a C/T which showed additional lesions in the liver...

https://connect.mayoclinic.org/comment/800327/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2023

I get tested for Chromogranin every 4 weeks. My last result was around 1000. It had...

https://connect.mayoclinic.org/comment/793083/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023

12/01/2022 Update for Sharon: Her recent Chromogranin level has spiked from the low 100's to 143....

https://connect.mayoclinic.org/comment/779552/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2022

Hello @reallywells, I'm glad that you posted your question about your Chromogranin A test. I can...

https://connect.mayoclinic.org/comment/766811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2022

ive had intermittent diarrhea and stomach pain for two years dr did chromogrnin a test that...

https://connect.mayoclinic.org/comment/762893/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2022

Hello @casualsuman. I'd like to join @colleenyoung in welcoming you to Connect. I've had surgeries for...

https://connect.mayoclinic.org/comment/760717/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2022

Hi Mark, regarding your question about the Chromogranin A (CGA) test, I have found some information,...

https://connect.mayoclinic.org/comment/745379/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2022

I am being evaluated for a host of symptoms...including flushing, spiking BP that is episodic, fast...

https://connect.mayoclinic.org/comment/673460/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2022

Hi everyone, I am newly diagnosed with a pancreatic NET, 11 cm in the body &...

https://connect.mayoclinic.org/comment/664794/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2021

My symptoms have lessened with a restricted diet-low histamine diet & gluten-free. Also, I continue to...

https://connect.mayoclinic.org/comment/643483/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2021

Does anyone but me have fluctuating high Chromogranin-A levels and normal HIAA-5 and Gallium scan results?...

https://connect.mayoclinic.org/comment/622607/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 2, 2021

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