Neuroendocrine Tumors (NETs) Support Group

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Comments (421)

@kimberlybrunson Has any treatment been planned for the lung NETs?

https://connect.mayoclinic.org/comment/1492384/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28 7:54am

Hello @ineedawhale and welcome to the NETs support group on Mayo Connect. On Connect, we have...

https://connect.mayoclinic.org/comment/1357814/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

Hello @dragonfly214 and welcome to Mayo Connect. I understand from your post that this is a...

https://connect.mayoclinic.org/comment/1394247/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

No. He has pnets. I know lung nets are a bit of different animal. In addition...

https://connect.mayoclinic.org/comment/1329069/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hello @mhcohan and welcome to the NETs support group on Mayo Clinic Connect. Yes, there are...

https://connect.mayoclinic.org/comment/1415779/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Hello @blm1024 and welcome to the NETs group on Mayo Connect. We have several discussion groups...

https://connect.mayoclinic.org/comment/1350220/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Hello @annie12345, I am glad that you found this forum. It will help you find support...

https://connect.mayoclinic.org/comment/1328967/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

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

In life there are both clubs we seek to join and clubs that seek to join...

https://connect.mayoclinic.org/comment/1357919/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

I have been taking octreotide injections for 4 years for lung NETs and have not had...

https://connect.mayoclinic.org/comment/1207164/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2025

I also have slow growing lung nets in both lungs one has grown very slightly over...

https://connect.mayoclinic.org/comment/1328533/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

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: Jan 7, 2025

Yes, that was what was recommended. I consulted a surgeon and he also recommended radiation as...

https://connect.mayoclinic.org/comment/943959/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

Yes, thanks for the advice. I plan on getting a 2nd opinion and will spend time...

https://connect.mayoclinic.org/comment/1030506/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

@annie12345 After you read thru all the posts, let me know what questions you still have....

https://connect.mayoclinic.org/comment/1329039/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hello @oilyproudnana and welcome. It looks like your biopsy confirmed lung NETs. Is that correct? I...

https://connect.mayoclinic.org/comment/1392531/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2025

For anyone in the S. CA area, I had my DOTATATE PET Scan at UCLA in...

https://connect.mayoclinic.org/comment/835350/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

@jessie1990 Great news and that sounds right for typical lung NETs. They monitor with CT scans...

https://connect.mayoclinic.org/comment/1430647/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@pammy229 I appreciate the added information on your recent lung NET diagnosis. I'll invite some other...

https://connect.mayoclinic.org/comment/1198262/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hello @kathyzee and welcome to Connect. I can understand your concern and wanting to connect with...

https://connect.mayoclinic.org/comment/1344435/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

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