Neuroendocrine Tumors (NETs) Support Group

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Comments (933)

In 2021 I went to the emergency room with severe stomach pain. Thank-God the emergency room...

https://connect.mayoclinic.org/comment/1427968/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

We’ve agreed I will have the scan instead of the biopsy. Woohoo. The good news is...

https://connect.mayoclinic.org/comment/879234/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

Thank you for checking on me. I am having some back pain and sciatic pain. I...

https://connect.mayoclinic.org/comment/834136/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

Hi Sandi You are a blessed person 19 year. Wow!!!! I was on lanreotide and had...

https://connect.mayoclinic.org/comment/746905/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2022

I had 4 prrt sessions. All tumors shrank substantially making surgery more feasible. They continued me...

https://connect.mayoclinic.org/comment/1489283/

Discussion: Finished PRRT and I'm wondering about others' results.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23 8:54am

Hello Matt2024 and others with MENS1. Similar experience: parathyroids removed and one relocated to inner arm....

https://connect.mayoclinic.org/comment/1312686/

Discussion: Recently diagnosed with MEN1

Support Group: Diabetes & Endocrine System

Posted: May 25, 2025

I am also one of the lucky ones with carcinoid syndrome.. started with Lanreotide which didn’t...

https://connect.mayoclinic.org/comment/1123918/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2024

I go to KU Med, and they have always scheduled my PET scans for the day...

https://connect.mayoclinic.org/comment/896642/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Dear Terry, My spouse was miss diagnosed for years with GERD. He has a "heavy tumor...

https://connect.mayoclinic.org/comment/973944/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2023

I feel for you with the difficult to control blood sugars. For a time I was...

https://connect.mayoclinic.org/comment/838750/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Don’t remember the grade in our case, but my wife had stage 4. She had primary...

https://connect.mayoclinic.org/comment/1344908/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2025

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was...

https://connect.mayoclinic.org/comment/746044/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6, 2022

Hi Joy (good positive name) I believe your primary source is in your sm. intestine (same...

https://connect.mayoclinic.org/comment/953010/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

Yes, I have hair thinning. My curly gray hair measures a few inches below my shoulders....

https://connect.mayoclinic.org/comment/1165778/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2024

Kim1965, I was very interesting to read about your wife’s case. Sounds very similar to mine...

https://connect.mayoclinic.org/comment/932191/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2023

I am new to Lanreotide injections - same as Somatuline Depot monthly injections I get for...

https://connect.mayoclinic.org/comment/792305/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

I have LiverNET with approx 25 cancerous nodes. was diagnosed in very early Jan of 2023....

https://connect.mayoclinic.org/comment/920222/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 28, 2023

Yes … taking ones weight off of the leg/hip being injected definitely helps! Having had many...

https://connect.mayoclinic.org/comment/882672/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

@ Turkey - huge. 20×16×12 cm. It had grown over part of my stomach, vascularized. So...

https://connect.mayoclinic.org/comment/881954/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

I went through that surgery ( and hysterectomy at the same time due to endometrial cancer)....

https://connect.mayoclinic.org/comment/846750/

Discussion: Who has had Distal Pancreatectomy and regretted it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

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