Neuroendocrine Tumors (NETs) Support Group

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Sakota- Multifocal is a category of lung cancer that since 1960 was a redefined bronchioloalveolar carcinoma...

https://connect.mayoclinic.org/comment/232727/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 8, 2018

First time here and would appreciate any info from folks with a similiar issue. I had...

https://connect.mayoclinic.org/comment/811885/

Discussion: Carcinoid tumor of the appendix.PET scan results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Welcome @tufan, I'm sorry to hear that treatment thus far has not slowed the progression of...

https://connect.mayoclinic.org/comment/801569/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Hello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you...

https://connect.mayoclinic.org/comment/1450859/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...

https://connect.mayoclinic.org/comment/1209090/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

Thanks! @hopeful33250 those articles are helpful! I’m a caregiver. My mom was diagnosed with NETs (Primary...

https://connect.mayoclinic.org/comment/311779/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2020

@tomrennie Just returned from my checkup at Mayo Rochester. Pretty good news. They could find no...

https://connect.mayoclinic.org/comment/1411202/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2025

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

@lcbrazen100 I just stopped my AI this last July after 5 years...doctor wanted me to go...

https://connect.mayoclinic.org/comment/984628/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 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

Thank you for sharing your difficult journey. You seem to be in the stage of diagnosis...

https://connect.mayoclinic.org/comment/756676/

Discussion: Need help with diet after a hemicolectomy....

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2022

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 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

Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions...

https://connect.mayoclinic.org/comment/1226272/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2025

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

Sorry l have been sick, Yes it was the scan we all were talking about! The...

https://connect.mayoclinic.org/comment/1033757/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

Thanks to everyone for responding. I am going to check with my oncologist and surgeon about...

https://connect.mayoclinic.org/comment/1107805/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Hello @megansims I can certainly understand your concern about your symptoms and also about your intermittent...

https://connect.mayoclinic.org/comment/271250/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2019

NuB The VA sent me to a cancer clinic close to my home. I did not...

https://connect.mayoclinic.org/comment/764213/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2022

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