Neuroendocrine Tumors (NETs) Support Group

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Comments (209)

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

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

Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid,...

https://connect.mayoclinic.org/comment/1021964/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2024

William, I can not answer that. Not a physician and not licensed to practice medicine anywhere...

https://connect.mayoclinic.org/comment/971699/

Discussion: Anyone had nauseous, gas burping as symptoms for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

I was diagnosed with Carcinoid tumor in Feb 2023. My Chromogranin A blood count had hit...

https://connect.mayoclinic.org/comment/929310/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2023

I had a FNAC biopsy on a similar sized tumor in the same place. No one...

https://connect.mayoclinic.org/comment/903890/

Discussion: 1.7 cm Pnet recently found. Is a biopsy pretty standard protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2023

Many things go into this kind of decision. How old are you? Are you symptomatic? If...

https://connect.mayoclinic.org/comment/903857/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

PET came back tumors both adrenals and cysts on kidneys. Urine rest was Meg. Awaiting new...

https://connect.mayoclinic.org/comment/903643/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

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