Neuroendocrine Tumors (NETs) Support Group

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Comments (271)

Hello @tkubista and welcome to Mayo Clinic Connect! I am sorry to hear about your NET...

https://connect.mayoclinic.org/comment/329137/

Discussion: Small bowel NET and colon cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2020

@tgsenn70: I am also NET small intestine primary with liver metastases, diagnosed 10/2022 with 28 day...

https://connect.mayoclinic.org/comment/1282563/

Discussion: NET in the jejunum spread to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

@panorman3 , I, too, have an inoperable tumor. It’s in my stomach and was found 7...

https://connect.mayoclinic.org/comment/1260726/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 9:48pm

I have stage 3 NET cancer and had a large tumor in my small intestine removed,...

https://connect.mayoclinic.org/comment/942886/

Discussion: Learn About NETs and monthly meetings

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Cobraman: Hi! I received diagnosis of small intestine (duodenum) NET tumor that had metastasized to liver...

https://connect.mayoclinic.org/comment/868984/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

@lastround your diagnosis seems so similar to my dads story in the sense of areas affected...

https://connect.mayoclinic.org/comment/834179/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

If you Google neoendrocrine carcinoid tumors and read the neoendrocrine tumors q and a plus right...

https://connect.mayoclinic.org/comment/1231828/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7 7:10pm

Looking back, I had symptoms of severe diarrhea 5 years before diagnosis. Nightime diarrhea including incontinence....

https://connect.mayoclinic.org/comment/1202313/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2 9:52am

My metestatic carcinoid cancer was discovered by accident when my GYN was doing an endoscopic look...

https://connect.mayoclinic.org/comment/827308/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

@steven1953: I am sorry that you are dealing with the uncertainty of tumor progression. My situation...

https://connect.mayoclinic.org/comment/1110367/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

@badi I'm a 59 year old female, and I, too, am Stage IV Carcinoid. My original...

https://connect.mayoclinic.org/comment/822156/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Terry998: This is the first time I have found a person willing to talk about Cysts...

https://connect.mayoclinic.org/comment/819547/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Hi @Jestjohn, I have NET small intestine primary tumor near pyloric channel & duodenum that was...

https://connect.mayoclinic.org/comment/981222/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2023

mpg20, Wow, it sounds like you’ve been through the wringer. And now doing so well! It...

https://connect.mayoclinic.org/comment/844813/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2023

Splendrous, I've been on Octrotide injections monthly since April 2018, a month after my first surgery...

https://connect.mayoclinic.org/comment/1208675/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 10:09pm

I understand how you feel ! I’ve done a lot of research , well mostly google...

https://connect.mayoclinic.org/comment/1237685/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15 3:13pm

@sarahfloranne, Sorry to hear you’ve had this side effect to the Lanreotide - which unfortunately is...

https://connect.mayoclinic.org/comment/876306/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2023

Welcome, Christine. You're not alone. I moved your message to this existing discussion: - Newly diagnosed...

https://connect.mayoclinic.org/comment/750122/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2022

I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my...

https://connect.mayoclinic.org/comment/804478/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

I had a hemicolectomy because of a NET tumor of the small intestine and had many...

https://connect.mayoclinic.org/comment/745966/

Discussion: What helps with gas and pain after surgery?

Support Group: Cancer: Managing Symptoms

Posted: Sep 5, 2022

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