Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

I’m so sorry to hear your mother is having these terrible symptoms, , I’m 61 and...

https://connect.mayoclinic.org/comment/940275/

Discussion: Mother might have neuroendocrine tumors, is being told she has IBS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

I had surgery in 2007 when they found the tumor. They removed it, along with most...

https://connect.mayoclinic.org/comment/898942/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Hello @jlsgt and welcome to the NETs support group on Mayo Connect. NETs are a rare...

https://connect.mayoclinic.org/comment/1106357/

Discussion: NETS Mesentery, Small Bowel Resection, Lanreotide, Octreotide, Story

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

I have had two surgeries for nets. The first was in my small intestine, so had...

https://connect.mayoclinic.org/comment/875909/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2023

I’m home now after surgery and 8 nights in hospital, mostly in the ICU. It was...

https://connect.mayoclinic.org/comment/844203/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2023

I had 12" of my small intestine removed 12 years ago because of carcinoid tumors, at...

https://connect.mayoclinic.org/comment/752921/

Discussion: Just got the news… stage 2 Carcinoid tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

According to the article “Multiple Primary Tumors Over a Lifetime” on CancerNetwork.com, “A cancer of a...

https://connect.mayoclinic.org/comment/810100/

Discussion: determination of primary site of NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2023

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

Hi helloitsme, I'm glad you reached out. We were both very scared about the surgery. It...

https://connect.mayoclinic.org/comment/893237/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2023

My experience: After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to...

https://connect.mayoclinic.org/comment/1061064/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Good morning to (hello it’s me) I was diagnosed Dec. 2022.. started in small intestine and...

https://connect.mayoclinic.org/comment/851326/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hi harley4650, sorry to hear that treatment is not working as hoped. In addition to the...

https://connect.mayoclinic.org/comment/1037432/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2024

Glad to join this group. My tumor on the outside of the small intestine was found...

https://connect.mayoclinic.org/comment/886230/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

@firepowr if you don’t mind me asking, what have they said about yours that is considered...

https://connect.mayoclinic.org/comment/813521/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 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

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

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate...

https://connect.mayoclinic.org/comment/792451/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable...

https://connect.mayoclinic.org/comment/1060569/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

Hi @taneall I am in the same boat as your husband...grade 1, stage 4. It is...

https://connect.mayoclinic.org/comment/892998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 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

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