Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response...

https://connect.mayoclinic.org/comment/885814/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

mgb20, Reading your post was like reading my story - 5 years ago (3/18) I, too,...

https://connect.mayoclinic.org/comment/830736/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23, 2023

Hi jestjohn, I’d be interested to know the results of your Dec. 15, 2023 PET scan....

https://connect.mayoclinic.org/comment/1015601/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2024

Hi there! Your diet doesn't sound dull to me at all! I believe this diet or...

https://connect.mayoclinic.org/comment/856433/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

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

We been missing in action due to more hospitalizations. We did just get a bit of...

https://connect.mayoclinic.org/comment/1329420/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Thanks for all the comments regarding my son. His medical care is 24-7 sometimes sitting is...

https://connect.mayoclinic.org/comment/1303165/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2025

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll...

https://connect.mayoclinic.org/comment/898735/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hello, My name is Lenora and this is my first time commenting on the NETs website....

https://connect.mayoclinic.org/comment/668493/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2022

@helloitsme, Something you said in your initial post just struck a chord with me, and that...

https://connect.mayoclinic.org/comment/854505/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi Eileen; I’m sure you’re in complete shock with your diagnosis. Your case sounds a lot...

https://connect.mayoclinic.org/comment/1284362/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2025

My husband was diagnosed with GTSBnet grade1-grade2 well-differented tumor 3 years ago. First you have to...

https://connect.mayoclinic.org/comment/1204614/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to...

https://connect.mayoclinic.org/comment/1009722/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

I just had my what has become a yearly as opposed to every three to six...

https://connect.mayoclinic.org/comment/854136/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi @ce1b I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs....

https://connect.mayoclinic.org/comment/896824/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

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

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

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