Neuroendocrine Tumors (NETs) Support Group

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Comments (200)

Hello, I have a stage 3 lung NET. I found a lot of good information on...

https://connect.mayoclinic.org/comment/998253/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH...

https://connect.mayoclinic.org/comment/976431/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Hi Emily, My strength after the lobectomy was slow at the beginning. My surgery was September...

https://connect.mayoclinic.org/comment/975317/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2023

While my tumors have been located and biopsies and I’m on my seventh injection of Lanreotide...

https://connect.mayoclinic.org/comment/933719/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2023

Yes I have had one discovered about two years ago with a heart MRI. It was...

https://connect.mayoclinic.org/comment/907604/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

Hi @jogessert I met a lady through LACNETS.org that had a single 9 cm lung carcinoid...

https://connect.mayoclinic.org/comment/899451/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2023

Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out...

https://connect.mayoclinic.org/comment/899337/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Hi Jane @gram26 I would agree with Theresa to check out all the DIPNECH comments on...

https://connect.mayoclinic.org/comment/882190/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent...

https://connect.mayoclinic.org/comment/876745/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2023

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

I became aware of the nodule in February 2023 after CT scan due to COVID .I...

https://connect.mayoclinic.org/comment/831626/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what...

https://connect.mayoclinic.org/comment/831612/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have...

https://connect.mayoclinic.org/comment/825153/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Hello, I was diagnosed in March '22 with neuroendocrine atypical carcinoid cancer. I had a partial...

https://connect.mayoclinic.org/comment/805534/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2023

Hello @elkeann and welcome to the NETs discussion on Mayo Connect. Facial flushing is often a...

https://connect.mayoclinic.org/comment/802512/

Discussion: Neck and face red flushing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

I also just had a copper scan August 2022 they found a hemangioma in my 5th...

https://connect.mayoclinic.org/comment/750923/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

Hello All: For those of you who have had surgery for NETs in the thoracic area...

https://connect.mayoclinic.org/comment/631580/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2021

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your...

https://connect.mayoclinic.org/comment/134281/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2019

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

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

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