Neuroendocrine Tumors (NETs) Support Group

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Patrick, you have helped me immensely! I can't believe I found someone else that has this!...

https://connect.mayoclinic.org/comment/908215/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2023

@mgreene No problem regarding the error in the date - I understood what you were trying...

https://connect.mayoclinic.org/comment/184534/

Discussion: Carcinoid Cancer and working

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2018

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28 12:10pm

I guess its time for an update. On April 14'th Dr Cleary and his team went...

https://connect.mayoclinic.org/comment/849178/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

I agree with other comments you need to respectfully push your care team for possible treatments...

https://connect.mayoclinic.org/comment/889727/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 4, 2023

Well, let me know if there is anything that I can do to help. I just...

https://connect.mayoclinic.org/comment/839539/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2023

Hello @sandy23 I'm just now catching up on your posts that started on October 7. I...

https://connect.mayoclinic.org/comment/762504/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2022

I had the Whipple October of 2024 and then 3 months later when I went in...

https://connect.mayoclinic.org/comment/1269552/

Discussion: Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29 4:27pm

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013....

https://connect.mayoclinic.org/comment/849237/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

Hi dbamos1945. I would think you have both cysts and solid tumors in your liver. A...

https://connect.mayoclinic.org/comment/819906/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2023

@fabiant No she had a open incision, about 12" from center of stomach up. So a...

https://connect.mayoclinic.org/comment/848829/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

You should ask your doctor first to test your Serotonin levels when they do your 28...

https://connect.mayoclinic.org/comment/1357948/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27 6:46pm

Hi, I was in middle of this and my msg just disappeared..lol but anyway, no my...

https://connect.mayoclinic.org/comment/1296038/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3 8:08pm

@jutebox42 & @hopeful33250 You asked about my Neuroendocrine Cancer diagnosis - dx October 2021 biopsy in...

https://connect.mayoclinic.org/comment/1251442/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6 1:53am

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

Hello everyone!! I am new to the group!! Have been on my cancer journey since April...

https://connect.mayoclinic.org/comment/755415/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 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

Thanks for all of that information, @gapsc I know so many NET patients who were misdiagnosed...

https://connect.mayoclinic.org/comment/134270/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2018

Hi billyfeet, I had two NETs on the tail of my pancreas both over 2 cms....

https://connect.mayoclinic.org/comment/842530/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

@markbrinkley Sure, I have had surgeries for all three NETs with no other treatment beyond the...

https://connect.mayoclinic.org/comment/234458/

Discussion: New to Mayo: MEN1 with duodenum NET G1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2018

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