Neuroendocrine Tumors (NETs) Support Group

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Comments (2,054)

How did your embolization go? I have grade 2 metastatic to the liver with no known...

https://connect.mayoclinic.org/comment/1364518/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5 5:56pm

I was diagnosed with a net tumour in my colon in 2021. This metastasized to the...

https://connect.mayoclinic.org/comment/1076135/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Thank you Colleen. They have done following tests in order below Xray - saw a mass...

https://connect.mayoclinic.org/comment/794480/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

Hi I was diagnosed with NET in my small intestines just like you in 2011 I...

https://connect.mayoclinic.org/comment/752699/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2022

Unfortunately I have found out that Medicare only approves medical nutrition counseling for Diabetes and kidney...

https://connect.mayoclinic.org/comment/1275580/

Discussion: NETS and Nutrition

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6 11:38am

I have been with Mayo in Rochester since Feb 2020. I have grade 3 NETs in...

https://connect.mayoclinic.org/comment/765344/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2022

Hello @maryluph1953 I see that you are in the process of treatment for Merkel Cell Carcinoma...

https://connect.mayoclinic.org/comment/1155843/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: Oct 12, 2024

Hello @juandixon It has been a few weeks since your last post and I was wondering...

https://connect.mayoclinic.org/comment/814192/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

@kc43 how interesting that the initials in your mayo name of @kc43, is the exact initials...

https://connect.mayoclinic.org/comment/1110663/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

I had a very small carcinoid tumor removed in 2015 on my first colonoscopy that was...

https://connect.mayoclinic.org/comment/1146694/

Discussion: After initial tests/consults at Mayo: When does NETs treatment start?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2024

I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after...

https://connect.mayoclinic.org/comment/773459/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2022

i appreciate your sharing. Were your tumors growing and that is why they gave you 4...

https://connect.mayoclinic.org/comment/1344045/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8 9:15pm

Yes...mine were found in the lesser curve of My stomach. My Gastroenterologist wants to check my...

https://connect.mayoclinic.org/comment/872777/

Discussion: Neuroendocrine tumor and carcinoid tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

I have been on Lanreotide ( every 4 weeks) for 2+ yrs now for pNET with...

https://connect.mayoclinic.org/comment/1279952/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12 9:41am

My husband has Net that metastasized to his liver. We started at MGH but are currently...

https://connect.mayoclinic.org/comment/884054/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Hello! I was diagnosed with pNET last december (2022). Grade 2 stage 4. Had surgery on...

https://connect.mayoclinic.org/comment/896311/

Discussion: More info on gastric NET w/liver mets and progression of symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

I have an unknown primary They think in my small intestines but it isn’t showing on...

https://connect.mayoclinic.org/comment/862966/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2023

Sorry to hear that Delores. I was diagnosed with stage four pancreatic cancer that spread to...

https://connect.mayoclinic.org/comment/842181/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

@andy2020 My wife is also taking the Cape and Temoz, in the pill version. She has...

https://connect.mayoclinic.org/comment/810994/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

At 14 cm and 3% ki67 that thing was most likely there a loooooong ttime. The...

https://connect.mayoclinic.org/comment/1349618/

Discussion: 14 CM PNET w/ one year post resection. When will I see reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16 12:12pm

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