Neuroendocrine Tumors (NETs) Support Group

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Comments (936)

That is interesting that you also were diagnosed with SIBO. I was on three different antibiotics...

https://connect.mayoclinic.org/comment/1279685/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2025

I have had three cycles, so far, of Lutathera, starting in December 2022. and have my...

https://connect.mayoclinic.org/comment/859738/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2023

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1...

https://connect.mayoclinic.org/comment/1143500/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

What is the difference with Atypical Nets. And typical? This is gig666/ have they say just...

https://connect.mayoclinic.org/comment/1029596/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8, 2024

Hello @grec and welcome to the NETs support group on Mayo Connect. It is a good...

https://connect.mayoclinic.org/comment/1004066/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

She had her surgery March 1st of this year. It’s about a 4-6 hr surgery ours...

https://connect.mayoclinic.org/comment/938780/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

Yes I have had one discovered about two years ago with a heart MRI. It was...

https://connect.mayoclinic.org/comment/907604/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

Hello @elkeann and welcome to the NETs discussion on Mayo Connect. Facial flushing is often a...

https://connect.mayoclinic.org/comment/802512/

Discussion: Neck and face red flushing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting...

https://connect.mayoclinic.org/comment/799134/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated....

https://connect.mayoclinic.org/comment/796179/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

I’ve had hiccups and belching since i started chemo/immuno. No radiation. I think it’s the drugs...

https://connect.mayoclinic.org/comment/759071/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Oct 9, 2022

@tomrennie That is amazing I hope this does not happen often. I would imagine there would...

https://connect.mayoclinic.org/comment/1439368/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

@nannybb I just copied this from Mayo's website: Carcinoid tumors are a type of slow-growing cancer...

https://connect.mayoclinic.org/comment/1430781/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

The transplant was not done at Mayo, at Froedtert Hospital in Milwaukee, WI. The recovery has...

https://connect.mayoclinic.org/comment/1366630/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2025

I was diagnosed Jan 2020, grade 3 (ki67 17-29%), well differentiated, unknown primary, mets to liver...

https://connect.mayoclinic.org/comment/1334187/

Discussion: Everolimus/ Afinitor experience/side effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

In follow up visits I have learned that the veins in my chest are scarred and...

https://connect.mayoclinic.org/comment/1329280/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I was diagnosed with Pancreatic adenocarcinoma. Stage IV, metastasis to lungs and have had 70 treatments...

https://connect.mayoclinic.org/comment/1314871/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 28, 2025

Slowly we are getting the pieces of the puzzle to find out the staging. Tumor is...

https://connect.mayoclinic.org/comment/1290587/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

@splendrous, my oncologist is located at the Springfield Clinic Cancer Center. My oncology surgeon is located...

https://connect.mayoclinic.org/comment/1275161/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

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