Neuroendocrine Tumors (NETs) Q&A with a NETs Expert

Posted by Zebra @californiazebra, Feb 20, 2025

Just watched an hour long Q&A session on NETs with Dr. Eric Liu who is dedicated to NETs at his clinic in Denver. The questions covered lots of topics and are likely to touch on some questions any NETs patients may have. Worth a listen. I always find Dr. Liu's directness refreshing. No sugarcoating from him.

Hosted by the Carcinoid Cancer Foundation. Some of the viewer questions touched on Histotripsy, Signatera, Lanreotide/Octreotide, DIPNECH, carcinoid heart disease, NET test, Ki-67, PRRT, DOTATATE scans, Whipple procedure, and more.

He emphasized the value of seeing a NETs team ASAP vs. a team that deals with non-NETs cancers because the treatments are completely different and NETs experience matters. He also stated a doctor's ego should not get in the way of a patient's well being so if your doctor is offended by questions, get a new one.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2025

Hello @californiazebra and thank you for posting this video with Dr. Liu.

tniluasa11 | @tniluasa11 | Jul 26 4:26pm

yes

maeve115 | @maeve115 | Jul 26 5:16pm

Thanks for the informative video from a great human and NET Doctor

Turkey, Volunteer Mentor | @tomrennie | Jul 26 7:10pm

In reply to @tniluasa11 "yes" + (show)

@tniluasa11 Hi and welcome to Mayo Connect. Did you watch the video? Did you find anything helpful? Thanks.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 27 8:44am

In reply to @tniluasa11 "yes" + (show)

Hello @tniluasa11

I'd like to join @tomrennie in welcoming you to Mayo Connect. As this is your first post, please share, as you are comfortable, a little about your journey with NETs. Is this a new diagnosis for you?

zacharycat | @zacharycat | Jul 27 9:01am

I watched a couple videos with Dr Liu. As I recall he very much favors doing surgery whenever possible. When in doubt cut it out. He believes that even if not curative surgery improves survival time. He’s also skeptical of benign NETs, which he says often become metastatic.

mimighosh | @mimighosh | Jul 27 10:35am

My husband was diagnosed with primary small bowel NET and liver metastasis 2 years ago. In addition to a local oncologist in Virginia/ Maryland, we consulted with Dr Liu. In our experience he seemed the most experienced and prefers a reasonable approach tailored to each patient. He did not seem pushy and in our case, he suggested a wait and see approach with monthly Lanreotide shots.
Dr Liu hosts a monthly Facebook session where he takes live questions from patients. That’s a good venue to learn.

maeve115 | @maeve115 | Jul 27 6:05pm

In reply to @zacharycat "I watched a couple videos with Dr Liu. As I recall he very much favors doing..." + (show)

@zacharycat
My personal take is that Yes, for him cutting it out is the first line of treatment. He also is diligent in waiting to see (with close monitoring) if that is the best route He is also compassionate and competent when he would like to cut it out, but the body is too frail. Then he works hard to give quality of life and as much quantity as possible using "The right tool at the right time"