Neuroendocrine Tumors (NETs) Support Group

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Comments (421)

@lkent Can I ask how large your NETs tumors are? Why another biopsy if you were...

https://connect.mayoclinic.org/comment/1318269/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 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 @spaztwobe and welcome to the NETs support group. I see that @dbamos1945 and @tstern7 have...

https://connect.mayoclinic.org/comment/1315211/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2025

Hello @ds231 and @sammydj and welcome to the NETs support group on Mayo Connect. I am...

https://connect.mayoclinic.org/comment/1289819/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

I have neuroendocrine lung cancer stage 4, grade 1. Liver and bone nets. I've gotten good...

https://connect.mayoclinic.org/comment/1227132/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

Hello I have a couple of NETs tumors. One in the lung one in the mediastinum....

https://connect.mayoclinic.org/comment/1198328/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in...

https://connect.mayoclinic.org/comment/1198235/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi @donnapeck51 I’m sorry to hear about your Merkel cell carcinoma. I’m not a doctor but...

https://connect.mayoclinic.org/comment/1172492/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2024

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon...

https://connect.mayoclinic.org/comment/1142739/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related...

https://connect.mayoclinic.org/comment/1108851/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Hello @dolly123 and welcome to Mayo Connect. As you posted in the NETs (Neuroendocrine Tumors) support...

https://connect.mayoclinic.org/comment/1062285/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

I have a lung NET and My flushing was immediate and only lasted a minute or...

https://connect.mayoclinic.org/comment/1056779/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

General question...have NETS. I'm both lungs. The GA-68 Pet/scan. Reference my liver SUV. # was very...

https://connect.mayoclinic.org/comment/1054473/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

Has anyone had a combo of NETS...then a strange b!old starting low, low Iron, infusions, brought...

https://connect.mayoclinic.org/comment/1031321/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2024

I went out of NETWORK and the area to get a second opinion from a NET...

https://connect.mayoclinic.org/comment/989286/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2023

Welcome, @clintwlively. I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well -...

https://connect.mayoclinic.org/comment/981815/

Discussion: Stage four high-grade neuroendocrine carcinoma

Support Group: Lung Cancer

Posted: Dec 16, 2023

I met a lady through a NETs organization who told me she had a lung lobe...

https://connect.mayoclinic.org/comment/963377/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2023

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

I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

I have 2 NETS in my right lung. I am treating it with homeopathic tinctures, spiritual,...

https://connect.mayoclinic.org/comment/913605/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

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