Neuroendocrine Tumors (NETs) Support Group

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Comments (656)

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

I am glad that it has helped. It is very confusing. I got diagnosed in 8/22....

https://connect.mayoclinic.org/comment/1386006/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple...

https://connect.mayoclinic.org/comment/810800/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

I am struggling with exhaustion and pain in my legs as well as a weight gain...

https://connect.mayoclinic.org/comment/1249794/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of...

https://connect.mayoclinic.org/comment/1520444/

Discussion: Has anyone taken Prolia for bone loss after NETs treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5 2:54pm

Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....

https://connect.mayoclinic.org/comment/1220927/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2025

Yes … 19 years since first diagnosis post-appendectomy (or what had been suspected as an appendicitis...

https://connect.mayoclinic.org/comment/820107/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

Hello, I was diagnosed in March '22 with neuroendocrine atypical carcinoid cancer. I had a partial...

https://connect.mayoclinic.org/comment/805534/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2023

Hi Maria957, I have tried everything you can think of. A combination of Afinitor, Anastrozole, Xeloda...

https://connect.mayoclinic.org/comment/770105/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2022

@carver1164 I can feel your frustration with your words. I know how that feels. I was...

https://connect.mayoclinic.org/comment/1385938/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Hi! I was recently… finally diagnosed with DIPNECH. I am 69 and probably have had this...

https://connect.mayoclinic.org/comment/1173598/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

You definitely need to get a second opinion from a NETs specialist. Other types of lung...

https://connect.mayoclinic.org/comment/1242687/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

@ronjake, I’ve been on injections of Octreotide for 5+ years and only had a lump twice...

https://connect.mayoclinic.org/comment/898742/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I just told the nurse that gave me my octreotide shot this week that sometimes the...

https://connect.mayoclinic.org/comment/883399/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Hello @monkey5333 and welcome to the NETs discussion on Mayo Connect. Yes, I have had the...

https://connect.mayoclinic.org/comment/802775/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

@tgsenn70 Sure. But first, is your husband seeing a net specialist? Is the iv chemotherapy you...

https://connect.mayoclinic.org/comment/1404439/

Discussion: New pNET so scared

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...

https://connect.mayoclinic.org/comment/1024996/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

I had a follow up with the Oncologist earlier this week. I inquired about a NET...

https://connect.mayoclinic.org/comment/835888/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

Hi @blm1024 Welcome! Glad you’re in the other side of surgery. I have typical lung carcinoids...

https://connect.mayoclinic.org/comment/1350349/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

My son finished his 4th treatment of PRRT in February and had his petscan Dotatate taken...

https://connect.mayoclinic.org/comment/1056415/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024