Neuroendocrine Tumors (NETs) Support Group

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Comments (2,055)

Here is an article that I thought you might interesting, about a youngster with NETs who...

https://connect.mayoclinic.org/comment/134557/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2021

I, too, have NET (Ileum), along with several METS. I have been going to Mayo since...

https://connect.mayoclinic.org/comment/134671/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2018

Hello @avawein You posted about finding some"hotspots" on your liver after having a CU64 dotatate. I...

https://connect.mayoclinic.org/comment/636362/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2021

I also was diagnosed stage 4 primary in the small intestine and spread to the liver...

https://connect.mayoclinic.org/comment/1391349/

Discussion: Neuroendocrine carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11 6:31am

I had NET on the head of my pancreas so the surgery is different from yours....

https://connect.mayoclinic.org/comment/793161/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)....

https://connect.mayoclinic.org/comment/1035345/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

Is there a pet scan That cat scan the body to see if there are any...

https://connect.mayoclinic.org/comment/1022418/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

The strange thing is after my liver resection was done in 2019 I no longer had...

https://connect.mayoclinic.org/comment/1004730/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

I Had my Pet Scan today and it showed I have more Cancer spots showing up...

https://connect.mayoclinic.org/comment/1375721/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21 8:12am

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

I have continually gotten my lanreotide and have MRIs with contrast on a regular basis for...

https://connect.mayoclinic.org/comment/1169863/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

I would appreciate the name of your Atlanta dr. I am recently diagnosed w metastatic neuroendocrine...

https://connect.mayoclinic.org/comment/1145370/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2024

Thank you I did LACNETS a few weeks ago they were all a wealth of knowledge...

https://connect.mayoclinic.org/comment/1143715/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Thank you! I'm actually doing good with the octreotide( bi-weekly shots) and hopefully scheduled scans in...

https://connect.mayoclinic.org/comment/1000147/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

My problem at first was low sugar levels, as the tumors on my liver got bigger...

https://connect.mayoclinic.org/comment/868557/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 29, 2023

Hello @kate777 I'd like to join @colleenyoung and @char1962, in welcoming you to Connect. I've had...

https://connect.mayoclinic.org/comment/777407/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

Hey Frogsong, They hadn’t heard back from the specialist yet, so they decided not to do...

https://connect.mayoclinic.org/comment/847612/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2023

Big hugs to you. I’m glad you are feeling better and have had some positive outcomes...

https://connect.mayoclinic.org/comment/846916/

Discussion: Who has had Distal Pancreatectomy and regretted it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

I too have Gastrinomas had a perforated esophagus had major surgery to repair it. They discovered...

https://connect.mayoclinic.org/comment/1286959/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21 4:23pm

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