Neuroendocrine Tumors (NETs) Support Group

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Comments (269)

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

@aliatl Yes they gived same all three medicines, 6 times x 3 days. After 2. chemotherapy...

https://connect.mayoclinic.org/comment/823442/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hi @shella, I wanted to make sure you saw the helpful post from @merpreb. I have...

https://connect.mayoclinic.org/comment/815207/

Discussion: What tumor size is typical for removing part of the lung?

Support Group: Lung Cancer

Posted: Feb 21, 2023

@tufan HI Tufan, I'm sorry to hear that. I hope soon you start getting good treatment...

https://connect.mayoclinic.org/comment/803389/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 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

Greetings....I am still standing and living a normal life at 85 with my disease in the...

https://connect.mayoclinic.org/comment/801669/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting...

https://connect.mayoclinic.org/comment/799134/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 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

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

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon...

https://connect.mayoclinic.org/comment/1142739/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related...

https://connect.mayoclinic.org/comment/1108851/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Hello @dolly123 and welcome to Mayo Connect. As you posted in the NETs (Neuroendocrine Tumors) support...

https://connect.mayoclinic.org/comment/1062285/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

@colleenyoung Hi Colleen, I'm so glad you posted this article. Believe it or not, it was...

https://connect.mayoclinic.org/comment/1055394/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

General question...have NETS. I'm both lungs. The GA-68 Pet/scan. Reference my liver SUV. # was very...

https://connect.mayoclinic.org/comment/1054473/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Has anyone had a combo of NETS...then a strange b!old starting low, low Iron, infusions, brought...

https://connect.mayoclinic.org/comment/1031321/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2024

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

Hello Teresa, If I had a minimal uptake 2.1 SUV 1cm tumor (multiple other had no...

https://connect.mayoclinic.org/comment/1024566/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

Hi, I have had 2 of these scans, one in 3/23 and my second on 2/20/24,...

https://connect.mayoclinic.org/comment/1024460/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

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