Neuroendocrine Tumors (NETs) Support Group

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After 8 weeks of last PRRT treatment, Ga-68 DOTATATE PET/CT was done on Jan 29, 2024,...

https://connect.mayoclinic.org/comment/1007463/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2024

One thing to ask is about the coughing and breathing exercises you must do after surgery....

https://connect.mayoclinic.org/comment/990103/

Discussion: Questions I should ask before surgery for Lung NETs?

Support Group: Lung Cancer

Posted: Jan 2, 2024

@pamelasantacruz I'm just over 5 years now since diagnosis, chemo, radiation, and two surgeries (lumpectomy for...

https://connect.mayoclinic.org/comment/968340/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

Tom, that’s frustrating about your incidental findings too. I hope both conditions were successfully treated. I...

https://connect.mayoclinic.org/comment/958681/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2023

I have some small nodules in my lungs but my NET doctor said everyone has them...

https://connect.mayoclinic.org/comment/912003/

Discussion: FDG PET scan vs. 68Ga DOTATATE PET scan for neuroendocrine cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2023

The carcinoid heart disease caused a lot of swelling to the point it was putting pressure...

https://connect.mayoclinic.org/comment/911346/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

Could it be heart related, not lungs? I'm being evaluated for Carcinoid Heart Disease due to...

https://connect.mayoclinic.org/comment/863188/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20, 2023

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

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