Neuroendocrine Tumors (NETs) Support Group

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Comments (185)

Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage,...

https://connect.mayoclinic.org/comment/782928/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2022

Hi thalverson, On July 1, 2022 I had the surgical removal of a neuroendocrine tumor in...

https://connect.mayoclinic.org/comment/953017/

Discussion: Anyone suffered with diarrhea 3 mos after surgery small intestine NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

@astaingegerdm Thank you! I feel like a cry baby right now. Lol. Here I am, in...

https://connect.mayoclinic.org/comment/676577/

Discussion: What’s next: Seeking advice on how to navigate diagnosis appointments?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2022

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I...

https://connect.mayoclinic.org/comment/874619/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

I was suffering before my surgery with 3 small bowel constrictions due to Nets. I had...

https://connect.mayoclinic.org/comment/1216360/

Discussion: Carotid body tumor encasing completely carotid artery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

PRRT is hung up with the FDA approval process. I can't post messages with links yet,...

https://connect.mayoclinic.org/comment/127206/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2016

I had the Nissen wrap for hiatal hernia, March '25. My stomach has become more sensitive...

https://connect.mayoclinic.org/comment/1492160/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Jan 27 7:23pm

Good morning I have NETS in my small bowels and Liver, also with carcinoid syndrome, diarrhea,...

https://connect.mayoclinic.org/comment/1507896/

Discussion: Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17 8:12am

Hi. Watch out for drying tissues throughout your body. Especially during winter. My nostrils ran and...

https://connect.mayoclinic.org/comment/1499199/

Discussion: Anyone taking Cabometyx?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 6:52am

Hello @linsu, I see that you recently joined Mayo Connect. You are asking good questions about...

https://connect.mayoclinic.org/comment/1492357/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Jan 28 7:28am

I had my Lutathera treatments last year, Outside of fatigue for a few days, I did...

https://connect.mayoclinic.org/comment/1525847/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13 9:16am

I just completed my last PRRT (Lutathera)treatment in May, I had a scan before my third...

https://connect.mayoclinic.org/comment/1324144/

Discussion: Advice for Preparations and Expectations on starting PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2025

I was diagnosed with stage 4 advanced NET s primary in the small bowels, and metastasized...

https://connect.mayoclinic.org/comment/1112552/

Discussion: GI Net stage 4 advanced: Is it incurable?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2024

Low fibre diet was advised due to my small intestine net causing a possible bowel obstruction....

https://connect.mayoclinic.org/comment/1050410/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

Hi Sylvia, my hubs NETS started with a small bowl obstruction, ended up at the ER...

https://connect.mayoclinic.org/comment/946485/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 12, 2023

Hi @hopeful33250 and thanks for reaching out. I went to the hospital on August 30th with...

https://connect.mayoclinic.org/comment/942618/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

I had a resection in 2015 and had about a foot removed. Yes you will have...

https://connect.mayoclinic.org/comment/831318/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

Hello everyone I am now at home resting. My pain levels have dropped significantly since yesterday....

https://connect.mayoclinic.org/comment/819534/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Wow! Let me saw that I was treated like a rock star at Mayo in Jacksonville....

https://connect.mayoclinic.org/comment/770718/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2022

I was diagnosed with Carcinoid Cancer with Carcinoid Syndrome in 2003. By that time I was...

https://connect.mayoclinic.org/comment/741205/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2022

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