Neuroendocrine Tumors (NETs) Support Group

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Hi @kristin3, I have over 50 typical carcinoid tumors/DIPNECH across both lungs. Because I have so...

https://connect.mayoclinic.org/comment/849316/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Apr 25, 2023

Hello @dak10, I so appreciate hearing from you again with some more information on your journey...

https://connect.mayoclinic.org/comment/827367/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Hi @kissoon22, welcome. This must all be so shocking and scary as you learn about your...

https://connect.mayoclinic.org/comment/790563/

Discussion: Diagnosed with carcinoid tumor in the colon: Is this cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2022

Hello everyone!! I am new to the group!! Have been on my cancer journey since April...

https://connect.mayoclinic.org/comment/755415/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2022

Hello @tatteesmom3 and welcome to Mayo Clinic Connect. I can certainly understand that you would want...

https://connect.mayoclinic.org/comment/667143/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2022

AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare...

https://connect.mayoclinic.org/comment/661597/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2021

Hi, thank you! We did meet with the NET specialist. Still wants to give my mom...

https://connect.mayoclinic.org/comment/311789/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2020

@tomrennie That’s a mouthful! How sick do you feel? Just what your lungs needed. I hope...

https://connect.mayoclinic.org/comment/1437503/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 13, 2025

I’ve been dealing with PGL1 for over 25 years - had multiple surgeries and had been...

https://connect.mayoclinic.org/comment/1407006/

Discussion: Several inoperable paragangliomas, on lanreotide, now big mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2025

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

My tumors (lungs) were first noted in 2016 and as goes with NETS there is little...

https://connect.mayoclinic.org/comment/1318000/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2025

45 year old male(husband)$ diagnosed with Pcan. Stage IV, metastatic to lungs and liver. Starting chemo...

https://connect.mayoclinic.org/comment/1314101/

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

Support Group: Pancreatic Cancer

Posted: May 27, 2025

I was told not to worry about it. That is difficult to do. I also have...

https://connect.mayoclinic.org/comment/1274404/

Discussion: Could a mass on adrenal gland be linked to my carcinoid lung tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

They are flushing versus hot flashes. Flushing just turns you red, but you do not sweat....

https://connect.mayoclinic.org/comment/1203269/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Hello @breck and welcome to Mayo Connect. I see that this is your first post and...

https://connect.mayoclinic.org/comment/1169567/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Hi! I'm from Iowa. Have NETS in my lungs

https://connect.mayoclinic.org/comment/1169154/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2024

I would strongly request a PET. I've had one recently to see if my dipnech tumours...

https://connect.mayoclinic.org/comment/1142721/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

I am 48, well-diff, grade 3 (ki67 17-29), unknown primary with tumors in liver (innumerable), pancreas,...

https://connect.mayoclinic.org/comment/1117054/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2024

My tumors are not in my lungs but in response to the flushing, I experienced flushing...

https://connect.mayoclinic.org/comment/1107435/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

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