Neuroendocrine Tumors (NETs) Support Group

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My Advice Read up on picc lines before you make any decision My veins are sooo...

https://connect.mayoclinic.org/comment/1405715/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2025

Surgery was done at Trinity Hospital in Ann Arbor Mich, not at Mayo. All my treatment...

https://connect.mayoclinic.org/comment/1380479/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2025

As far as side effects from the PRRT treatments, I really didn't have any I could...

https://connect.mayoclinic.org/comment/1501633/

Discussion: Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9 10:52am

Hi Linda How did your scan go? Lots has happened since my last post. I had...

https://connect.mayoclinic.org/comment/837244/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

Hi @dougmck Are your lung nodules typical carcinoids, other lung cancer or small benign nodules? DIPNECH?...

https://connect.mayoclinic.org/comment/1206138/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

Okay this is where we are at now. My husband found out December 5th about his...

https://connect.mayoclinic.org/comment/1246998/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

Hi y’all! I thought I would check to see how you’re doing. Have you experienced facial...

https://connect.mayoclinic.org/comment/1151558/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2024

Do get a second opinion but be sure they are a NET specialist. My husband was...

https://connect.mayoclinic.org/comment/996445/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2024

I also was diagnosed stage 4 primary in the small intestine and spread to the liver...

https://connect.mayoclinic.org/comment/1391349/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

We have already had the primary removed in March 23, along with gall bladder, spleen, and...

https://connect.mayoclinic.org/comment/952558/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

First of all, I'm sorry about your challenges, but it sounded like you have a positive...

https://connect.mayoclinic.org/comment/797186/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

To @hopeful33250 Many thanks - I offer the following responses: 1. We have reviewed the C.F.C....

https://connect.mayoclinic.org/comment/745158/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

@kjstein: I wish you repeated success reducing your tumors, and years of happy living. NETS reminds...

https://connect.mayoclinic.org/comment/1356546/

Discussion: PRRT and lanreotide questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

I should mind my own business However! I have had 4 different options if there is...

https://connect.mayoclinic.org/comment/1028520/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2024

Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting...

https://connect.mayoclinic.org/comment/799134/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

Thanks for checking in on me. On March 17 I had lad work and a Nuc...

https://connect.mayoclinic.org/comment/257065/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2021

@kellysc: You are an inspiration to me! I agree with your positive outlook and acceptance of...

https://connect.mayoclinic.org/comment/1273030/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2025

I too am looking for some feedback on how others deal with NET. I've had PRRT...

https://connect.mayoclinic.org/comment/1190158/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2024

Hi Phyllis, I'm sorry you had to go through all this. As we all have different...

https://connect.mayoclinic.org/comment/1010023/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2024

I had PRRT at Mayo in Phoenix in 2021 due to inoperable NETs scattered throughout my...

https://connect.mayoclinic.org/comment/803848/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2023

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