Neuroendocrine Tumors (NETs) Support Group

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Comments (878)

Hi, my nodule is also 2.3 cm but is in the upper left lung. Biopsy is...

https://connect.mayoclinic.org/comment/1076544/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

I forgot to saying she got also lung infection, we thought because of the chemotherapy but...

https://connect.mayoclinic.org/comment/804781/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

@jessie1990 Understood. Still consult with a NETs specialist. Lung specialists are not necessarily NETs specialists and...

https://connect.mayoclinic.org/comment/1427228/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...

https://connect.mayoclinic.org/comment/1162603/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Diagnosed 1/27/23 lung NET Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule...

https://connect.mayoclinic.org/comment/803360/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

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

Here's more information about submitting a request for a second opinion at Mayo Clinic http://mayocl.in/http://mayocl.in/1mtmR63. Let...

https://connect.mayoclinic.org/comment/981830/

Discussion: Stage four high-grade neuroendocrine carcinoma

Support Group: Lung Cancer

Posted: Dec 16, 2023

Thank you so much for sharing your experience. My PET scan showed numerous spots in the...

https://connect.mayoclinic.org/comment/835101/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Hello @juliab56, many people here have had lung surgeries; resections, lobectomy, or full pneumonectomy. I’m sure...

https://connect.mayoclinic.org/comment/1459883/

Discussion: Anyone have a pneumonectomy? How are you doing now?

Support Group: Lung Cancer

Posted: Dec 13, 2025

I had 2 typical lung carcinoids diagnosed a little over a year ago. One was in...

https://connect.mayoclinic.org/comment/1056209/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

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

@hopeful33250 I've had a 5 week check up after surgery doc said there is abit of...

https://connect.mayoclinic.org/comment/1500631/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8 2:40am

I have an Acth producing tumer in lung if any one had similar case what was...

https://connect.mayoclinic.org/comment/803567/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2023

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

@aliatl Hi thanks for Reaply, sorry to here about your wife, she got Diogenes last summer...

https://connect.mayoclinic.org/comment/804697/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

I do. I had a lung net removed In April. Best guy at Mayo is dr...

https://connect.mayoclinic.org/comment/771380/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2022

Yes surgery soon for lung then checkups every 6 months showed bright on pet scan Thank...

https://connect.mayoclinic.org/comment/873237/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 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

@nannybb I honestly have no idea what is causing my pain it's lower lung mainly feels...

https://connect.mayoclinic.org/comment/1442731/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2025