Neuroendocrine Tumors (NETs) Support Group

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Comments (417)

Hello Diet information can be found at https://netrf.org/. I have stage 3 lung NETs and have...

https://connect.mayoclinic.org/comment/899083/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Thanks…. My diagnosis was Large Cell lung NETs, I was told it was more aggressive than...

https://connect.mayoclinic.org/comment/897051/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Hi @ce1b I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs....

https://connect.mayoclinic.org/comment/896824/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

STOMACH NET! Having a STOMACH NET is indeed an esoteric experience and different from the lung,...

https://connect.mayoclinic.org/comment/896811/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Hi Mike @mikecincy Sorry to hear you've joined the NETs club. It looks like you're doing...

https://connect.mayoclinic.org/comment/885633/

Discussion: NET found by colonoscopy. What to expect and how should I approach

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

Hi @amd12 -- Are you still using this message board? Just wondering what the status of...

https://connect.mayoclinic.org/comment/867413/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Wow @lastround that's terrible what the first two doctors told you. Glad you saw a third!...

https://connect.mayoclinic.org/comment/861458/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hello sorry to hear about your diagnosis but glad you found this forum. I was diagnosed...

https://connect.mayoclinic.org/comment/851412/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hi mcohan, I recommend LACNETS.org for tons of info on NETS. It's a support organization, not...

https://connect.mayoclinic.org/comment/844935/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

Hello @paula7 and welcome to Mayo Clinic Connect. Most folks with a diagnosis of neuroendocrine (NET)...

https://connect.mayoclinic.org/comment/828882/

Discussion: Anyone else have neuroendocrine cervical cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2023

Hello @dak10, I so appreciate hearing from you again with some more information on your journey...

https://connect.mayoclinic.org/comment/827367/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

@pete1962, I'd like to add to the helpful post from @lu7. (I wish you both successful...

https://connect.mayoclinic.org/comment/817128/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2023

Hello @paulaelliott007 and welcome to Mayo Connect. This is unusual to hear of sisters both having...

https://connect.mayoclinic.org/comment/801293/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Hi @kissoon22, welcome. This must all be so shocking and scary as you learn about your...

https://connect.mayoclinic.org/comment/790563/

Discussion: Diagnosed with carcinoid tumor in the colon: Is this cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2022

Hello @tatteesmom3 and welcome to Mayo Clinic Connect. I can certainly understand that you would want...

https://connect.mayoclinic.org/comment/667143/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2022

AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare...

https://connect.mayoclinic.org/comment/661597/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2021

Hello @amd12, I'd like to join Colleen, @colleenyoung, in welcoming you to the NETs group at...

https://connect.mayoclinic.org/comment/657390/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2021

Hi, thank you! We did meet with the NET specialist. Still wants to give my mom...

https://connect.mayoclinic.org/comment/311789/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2020

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