Neuroendocrine Tumors (NETs) Support Group

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Comments (881)

I have DIPNECH, also had my right middle lobe removed in October 2023. At this point,...

https://connect.mayoclinic.org/comment/1244351/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2025

I stated going to a pulmonary dr way before being dx withNET. I begged for a...

https://connect.mayoclinic.org/comment/841567/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2023

Hi @dzerfas, welcome to Connect. There are a number of people talking about carcinoid tumors in...

https://connect.mayoclinic.org/comment/134262/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2017

Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that...

https://connect.mayoclinic.org/comment/1022080/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

pamelasantacruz The only reason I had 30 radiation treatments was because I had lymph node involvement...

https://connect.mayoclinic.org/comment/992590/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2024

@ant12 One more thing, lanreotide/octreotide injections can really help with carcinoid syndrome -- the flushing, diarrhea,...

https://connect.mayoclinic.org/comment/1033639/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Good morning, I am in a similar category of diagnosis. My lung tumor metastasis is now...

https://connect.mayoclinic.org/comment/1265413/

Discussion: Grade 3, poorly differentiated duodenal NET metastasized to liver-

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2025

Back in 2020 I was being treated for ductal carcinoma in my right breast. After surgery(lumpectomy),...

https://connect.mayoclinic.org/comment/1208909/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 11, 2025

My 3 tumors in the lower lobe of my left lung cause little breathing problems and...

https://connect.mayoclinic.org/comment/912648/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2023

Thank you. Am glad yous is staying the same at least. LIke your attitude of time...

https://connect.mayoclinic.org/comment/233037/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Sep 1, 2019

Hello Teresa, If I had a minimal uptake 2.1 SUV 1cm tumor (multiple other had no...

https://connect.mayoclinic.org/comment/1024566/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

@jessie1990 That’s a good question for the NET specialist. No one has suggested to me that...

https://connect.mayoclinic.org/comment/1428039/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

Hello @onesillyrn and welcome to the NETs support group on Mayo Connect. From what you have...

https://connect.mayoclinic.org/comment/1317704/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2025

Hello @cmc188 and welcome to Connect. I would like to introduce you to @californiazebra and @triveraderubio,...

https://connect.mayoclinic.org/comment/1199781/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

It's hard to say what is normal in various diseases. You might ask his doctor or...

https://connect.mayoclinic.org/comment/1106827/

Discussion: Dealing with spouse who has carcinoid cancer.

Support Group: Caregivers

Posted: Jul 16, 2024

@lchaney1951, I believe your questions are for @tomrennie and @tonyhasumners about surgery, pain, and recovery. @californiazebra...

https://connect.mayoclinic.org/comment/1026169/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2024

Hi, I'm new to the group but was reading about the NETs but I've never heard...

https://connect.mayoclinic.org/comment/1289033/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

@cherlea - Welcome to Mayo Connect. I am so glad that you found us. After ten...

https://connect.mayoclinic.org/comment/232848/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jan 26, 2019

My doctors would not listen to me at all! Just kept saying they don't know why...

https://connect.mayoclinic.org/comment/979673/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2023

@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH...

https://connect.mayoclinic.org/comment/1054381/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

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