Neuroendocrine Tumors (NETs) Support Group

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Comments (721)

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

@sophiarose You’re very welcome! Here’s a a section from the Mayo informational page about afinitor (everolimus)...

https://connect.mayoclinic.org/comment/1004238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Hello, everyone. I just signed up for this group and hope I'm in the right place....

https://connect.mayoclinic.org/comment/656143/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2021

I am a 19+ year Stage IV Lung Cancer survivor because I was able to go...

https://connect.mayoclinic.org/comment/776728/

Discussion: Husband diagnosed: high grade carcinoma with neuroendocrine features

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 23, 2022

Yes 2nd opinion says it mimics a lung carcinoid (solid round nodule / slow growth)

https://connect.mayoclinic.org/comment/831614/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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

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

@nana120 So they didn’t remove your lung NET? Or had it already metastasized when first discovered?

https://connect.mayoclinic.org/comment/939523/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2023

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

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

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

@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 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 8:36pm

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 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

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

Yes, the tumor I had ablated was malignant (typical carcinoid). It was biopsied first. The microwave...

https://connect.mayoclinic.org/comment/1208685/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 10:59pm

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

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