Is there a list of the top NET specialists?

Thank You jagzandsherz for asking this significant question.
With research many folks with NETs have found the right NET specialist for them. Wishing you well in your search and success in getting your second opinion and beyond.

Lindabees recently posted this: "http://www.netrf.org has a directory of specialists by state and many of the listings include what percentage of the practice is dedicated to Nets.

Here is my personal reply:
I once went to an oncologist who stated in his profile that he was a Neuroendocrine Cancer Specialist. He was not. He had seen a couple of NET patients in his long career. That was not sufficient to assist me. I learned quickly that I needed to see someone who worked with a tumor board team and whose main proficiency was in Neuroendocrine Cancer. I was fortunate to find a reliable Doctor with an excellent team who can inform my local oncologist. I wanted to better explain the significance of finding the right NET Specialist. I asked AI for assistance.. Realizing that AI can definitely make mistakes too. Here are some of the answers. Wondering what other folks find important in finding the right medical support.

High Patient Volume and Dedicated FocusPrimary Focus: A true specialist dedicates the majority of their practice—or an entire program—strictly to neuroendocrine neoplasms.Patient Volume: They manage hundreds of NET patients, not just a handful. This high volume allows them to notice subtle patterns in tumor behavior, grading shifts, and treatment toxicities.

Next-Gen Imaging: True specialists rely on advanced, specialized scans like Gallium-68 DOTATATE or Copper-64 PET/CT. A general oncologist might mistakenly order standard FDG-PET scans, which frequently miss slow-growing NETs.

Direct Access to a Multidisciplinary Tumor Board

Mastery of Advanced, NET-Specific Diagnostics including Next-Gen Imaging, Pathology Nuances, Biochemical Tracking

Comprehensive Knowledge of Modern NET Therapies (tools in the toolbox).

I would add to the AI responses that I needed someone who understood that some NET patients need to develop trust again in their Doctors since they had been under diagnosed, misdiagnosed , dismissed and /or accused of being overly concerned (or worse) when they had suffered for years. I needed trust in me and my description of my struggles, and when I could not find the correct medical wording my meaning was still heard and respected. She had "Seen this before"

Hello @jagzandsherz and welcome to Mayo Clinic Connect. You are asking an important question. For the best outcome of NETs treatment it is important find a specialist who is well-versed in NETs. This is a rare form of cancer and is best treated with a professional who has vast experience.

There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

Will you share a little about your journey with NETs? Are you seeking a second opinion for yourself or a family member?

@hopeful33250

Thank you for your response. My husband has recently been diagnosed as having a NET. We are in the beginning stages of discovery with scans happening next week.

@maeve115 Thank you for the info. Much appreciated!

@jagzandsherz
I'm glad that you found Mayo Connect. This is a good place to learn from the experience of others. For many of us with NETs, our diagnosis came about as an incidental finding on a scan or endoscopy when our medical team was looking for something else.

Was this your husband's situation, or was he having symptoms that led his doctor to look for NETs?

Great information! Thank you

I would support the comments re: the MAYO clinic. They are documented as being a "center of excellence" for NET. My sister is being treated at the Jacksonville, Florida MAYO clinic for NET and I've had the privilege (I'm a Registered Nurse and live in Northern California, received my MSN from UCSF, School of Nursing) of supporting her and working with her team at the MAYO clinic. Her NET oncologist is extremely qualified and I've been able to participate "virtually" in all of her appointments. I've done some additional research re: centers of excellence for NET and on the West Coast, UCLA Medical Center is also identified.

@hopeful33250 Yes, he had an emergency endoscopy to fix a blocked common area bile duct when they found it.

@rodneysmom Thank you.

@jagzandsherz
Me too. I appreciate the Mayo Clinic deep care and competency.