Neuroendocrine Tumors (NETs) Support Group

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Comment

What type of NETs do you have? Are you currently taking the shots and having issues?...

https://connect.mayoclinic.org/comment/1417947/

Discussion: Octreotide shots

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2025

Comment

@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...

https://connect.mayoclinic.org/comment/976633/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Comment

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Comment

Allow me to be the acronym buster for this discussion: - SSA = Somatostatin analogue https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are...

https://connect.mayoclinic.org/comment/1001311/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Comment

@llr9f, It is so good to hear from you again. I'm glad that you have some...

https://connect.mayoclinic.org/comment/1329466/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Comment

I'm sorry you're seeing progression. Sounds like it's time for some treatment. I strongly recommend that...

https://connect.mayoclinic.org/comment/1432863/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

Comment

It takes time for due diligence. Sometimes surgery doesn't go as planned because there wasn't enough...

https://connect.mayoclinic.org/comment/1385970/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Comment

Thank you! I'm actually doing good with the octreotide( bi-weekly shots) and hopefully scheduled scans in...

https://connect.mayoclinic.org/comment/1000147/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Comment

Was an insulinoma the cause for his hypoglycemia? I have not researched on Octreotide much. Was...

https://connect.mayoclinic.org/comment/895885/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2023

Comment

Yes, it came back with a vengeance, it had metastasized to peritoneal lining, liver, gallbladder, bladder,...

https://connect.mayoclinic.org/comment/1350383/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

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