Neuroendocrine Tumors (NETs) Support Group

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Comments (569)

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

Hello, My name is Lenora and this is my first time commenting on the NETs website....

https://connect.mayoclinic.org/comment/668493/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2022

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

@helloitsme, Something you said in your initial post just struck a chord with me, and that...

https://connect.mayoclinic.org/comment/854505/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

I just had my what has become a yearly as opposed to every three to six...

https://connect.mayoclinic.org/comment/854136/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

My husband was diagnosed with GTSBnet grade1-grade2 well-differented tumor 3 years ago. First you have to...

https://connect.mayoclinic.org/comment/1204614/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5 1:05pm

Hi Eileen; I’m sure you’re in complete shock with your diagnosis. Your case sounds a lot...

https://connect.mayoclinic.org/comment/1284362/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18 12:27am

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to...

https://connect.mayoclinic.org/comment/1009722/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

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

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I...

https://connect.mayoclinic.org/comment/874619/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 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

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16 4:10pm

Shari, that's so great to hear that you are doing so well!!! Did you have genetic...

https://connect.mayoclinic.org/comment/244183/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Thanks for your update. It made me realize I haven't even looked at this thread since...

https://connect.mayoclinic.org/comment/1272515/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 10:41am

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I...

https://connect.mayoclinic.org/comment/811356/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...

https://connect.mayoclinic.org/comment/844936/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29 3:56pm

Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your...

https://connect.mayoclinic.org/comment/873777/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2023

Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your...

https://connect.mayoclinic.org/comment/1208016/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 5:26am

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