Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

291 total results

Comments (261)

Hi Teresa, I’m currently a patient at Mayo in Jacksonville. I have been treated this year...

https://connect.mayoclinic.org/comment/1170850/

Discussion: NET of the Rectum: Anyone at Mayo Jacksonville? What can I expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2024

Hi @breck You’ve been through a lot. Sorry to hear they did not get it all....

https://connect.mayoclinic.org/comment/1169807/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that...

https://connect.mayoclinic.org/comment/1161114/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

One thing you mentioned stood out for me. I had a carcinoid tumor removed because it...

https://connect.mayoclinic.org/comment/1382735/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 30, 2025

I have carcinoid tumors in my lungs. One began to grow, so my GP referred me...

https://connect.mayoclinic.org/comment/1382720/

Discussion: Lymph nodes removed during surgery removing tumors in the liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 30, 2025

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

I had a large one in my left lower lobe. Almost 2cm and they weren't sure...

https://connect.mayoclinic.org/comment/1318419/

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

I was diagnosed last year with a lung tumor and had my left lower lobe of...

https://connect.mayoclinic.org/comment/1314408/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2025

I do not have experience with ostricide shots but usually given it prior to any medical...

https://connect.mayoclinic.org/comment/1266755/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

I can only answer for lung. If you have a carcinoid tumor in your lung, the...

https://connect.mayoclinic.org/comment/1254782/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

I was diagnosed with DIPNECH in November 2024 after a segmental left lung resection for 3...

https://connect.mayoclinic.org/comment/1250339/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 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

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

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

This is my opinion with the facts for myself. I started octreotide twelve and a half...

https://connect.mayoclinic.org/comment/1162233/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2024

I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET...

https://connect.mayoclinic.org/comment/1108711/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

JULY 22 I was diagnosed with uterine cancer adenocarcinoma and had a hysterectomy, no node or...

https://connect.mayoclinic.org/comment/1076685/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Follow

8223

41 minutes ago

Pancreatic Cancer

Follow

3584

48 minutes ago

Follow

1178

57 minutes ago

Digestive Health

Follow

18385

2 hours ago

Melanoma & Skin Cancer

Follow

1085

4 hours ago