Neuroendocrine Tumors (NETs) Support Group

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Comments (268)

I think histotripsy is pretty exciting. Watch the videos on it. Yes, it was just approved...

https://connect.mayoclinic.org/comment/949922/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2023

Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you...

https://connect.mayoclinic.org/comment/939679/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Hello @netnan and welcome to Connect. Looking for voices of experience is what Connect is all...

https://connect.mayoclinic.org/comment/1106504/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

It is my understanding that you need to understand the cellular structure of the problem and...

https://connect.mayoclinic.org/comment/772407/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Hello @netnan, had left lung NET atypical carcinoid tumor. It was a little bigger - between...

https://connect.mayoclinic.org/comment/1106611/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

Hello, I have a stage 3 lung NET. I found a lot of good information on...

https://connect.mayoclinic.org/comment/998253/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Hi @dougmck Are your lung nodules typical carcinoids, other lung cancer or small benign nodules? DIPNECH?...

https://connect.mayoclinic.org/comment/1206138/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: 2 days ago

Hi @andy2020 You have really had a difficult time getting a diagnosis. I can understand how...

https://connect.mayoclinic.org/comment/810693/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

I also just had a copper scan August 2022 they found a hemangioma in my 5th...

https://connect.mayoclinic.org/comment/750923/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

Where did you do the trial at in Florida? Currently I am with Moffitt Cancer Center,...

https://connect.mayoclinic.org/comment/749790/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2022

I have a Lung NET that has spread to one of my lymph nodes. Was told...

https://connect.mayoclinic.org/comment/861198/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Is there a NET team anyone can recommend? I had a right upper lobe lobectomy in...

https://connect.mayoclinic.org/comment/794019/

Discussion: NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Support Group: Kidney Cancer

Posted: Jan 8, 2023

Hi @aliatl I was diagnosed with lung to liver net July 2021; first dr very negative:...

https://connect.mayoclinic.org/comment/824589/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2023

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

Hi GAP, Last May 2022 I had a lung NET removed with the right upper lobe...

https://connect.mayoclinic.org/comment/802258/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi thank you for your reply. I am in Australia. What are the side effects you...

https://connect.mayoclinic.org/comment/1205619/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

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

https://connect.mayoclinic.org/comment/1203258/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

I have breast cancer as well as lung NETs and DIPNECH. My breast cancer is unrelated;...

https://connect.mayoclinic.org/comment/1206124/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: 2 days ago

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: 2 days ago

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