Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

Pippa05, I am so very sorry to hear about your struggles. And I appreciate and can...

https://connect.mayoclinic.org/comment/897706/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2023

What areas of your body did they scan? Neck to pelvis? A Ga Dotatate PET-CT is...

https://connect.mayoclinic.org/comment/893208/

Discussion: SDHB Positive and Ga-68 Dotatate Scan question.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2023

I’m tired. No cancer diagnosis. Lots of cancer in my family… mom, aunt, grandma and my...

https://connect.mayoclinic.org/comment/882282/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

A chromogranin level of 1800 is quite high and taking account your blood pressure and a...

https://connect.mayoclinic.org/comment/882106/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

Hello @peg152 and welcome to Mayo Connect. Your concern is certainly understandable. The strange thing about...

https://connect.mayoclinic.org/comment/880986/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

I am presently in Japan and will be meeting with my oncologist the day after I...

https://connect.mayoclinic.org/comment/840491/

Discussion: Prostate Cancer with Neuroendocrine involvement found on pathology

Support Group: Prostate Cancer

Posted: Apr 9, 2023

@amyn1616, I've added your question to the Autoimmune Diseases support group as well as the NETs...

https://connect.mayoclinic.org/comment/831799/

Discussion: Is there a link between Autoimmune & Neuroendocrine conditions?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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

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

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