Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

I was diagnosed 5 years ago Have multiple surgeries procedures and treatments done My primary had...

https://connect.mayoclinic.org/comment/1266481/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@hopeful33250 I had my visit with the NET specialist (endocrinologist) a few days after the NET...

https://connect.mayoclinic.org/comment/1557794/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

I feel for you with the difficult to control blood sugars. For a time I was...

https://connect.mayoclinic.org/comment/838750/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

I had 3 NET tumors in stomach (mayor curve). The treatment was resection and after that...

https://connect.mayoclinic.org/comment/802563/

Discussion: Neck and face red flushing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

Started with two rounds of CAPTEM. Didn’t work at all. Then did 10 rounds of FOLFIRINOX,...

https://connect.mayoclinic.org/comment/796241/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

Since you have 5 lung NETs, read up on DIPNECH which is something some of us...

https://connect.mayoclinic.org/comment/1359327/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2025

I’ve gone through four embolization procedures on my liver and I’m down to my last one...

https://connect.mayoclinic.org/comment/1047618/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2024

@tammyv615 Good plan. I had my tumor ablation at UCLA. They have a NETs multidisciplinary team...

https://connect.mayoclinic.org/comment/1071228/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

I had major flushing and diarrhea I was put in Lanreotide which made those symptoms worst...

https://connect.mayoclinic.org/comment/753332/

Discussion: My first sudden facial flush since NETs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

I was also diagnosed accidentally when I had a CT scan for a possible hernia. The...

https://connect.mayoclinic.org/comment/1459500/

Discussion: Did anyone else have a long struggle to getting a NETs diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2025

We sound very similar. Small bowel primary with mets to liver. Started octreotide after bowel resection....

https://connect.mayoclinic.org/comment/1218810/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

We are hopeful that the treatment will help reduce the size of the tumors again. These...

https://connect.mayoclinic.org/comment/887598/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

Yes … taking ones weight off of the leg/hip being injected definitely helps! Having had many...

https://connect.mayoclinic.org/comment/882672/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Hoping your wife is continuing to do well. My husband has struggled a bit coming back...

https://connect.mayoclinic.org/comment/1125881/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 18, 2024

@kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long...

https://connect.mayoclinic.org/comment/1394217/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Hi! I have been receiving Octreotide injections once a month for about a year now. For...

https://connect.mayoclinic.org/comment/1196315/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Slow growing is good! How large is the largest tumor? It makes me wonder if you...

https://connect.mayoclinic.org/comment/1081836/

Discussion: Multiple bilateral neuroendocrine lung tumors grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2024

November of 2024 was my last PRRT treatment and my results are still amazing My tumors...

https://connect.mayoclinic.org/comment/1498524/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:18am

Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300...

https://connect.mayoclinic.org/comment/1108887/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

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