Why is seeing a NET specialist important? How to find one?

Posted by maeve115 @maeve115, Jul 9 4:44pm

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"

Others?

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

patrick031621 | @patrick031621 | 2 days ago

In reply to @dadcue "@patrick031621 I'm relatively far down that list of things that can happen with my primary ileal..." + (show)

@dadcue Pain is sort of a relative thing. I had a horribly painful surgery at age 17 where I was opened up from side to side back in the days of morphine only and pain management wasn't so advanced. It sort of established a baseline for me as to what is tolerable. I didn't think the NET surgery was that painful if not a walk in the park, but I am not a good judge there . I could roll with it and I enjoyed the pretty nurses who took care of me afterward..
As to the surgery itself it would be nice to know psychologically what section they plan on removing and how many inches or cms. It will give you at least an idea of what you may face in diet and absorption of nutrients and necessary vitamins and minerals. Not that it will change things. I like being educated anyway. You can get a breakdown of each section of your intestines and what is primarily absorbed at each section. The intestines, it goes without saying, are very complicated and they are still learning about them. I have had a malabsorption issue since the surgery and have had to work on it quite a bit since then. You might find this site interesting. https://epomedicine.com/medical-students/site-absorption-vitamins-minerals-nutrients/

Mike | @dadcue | 2 days ago

In reply to @patrick031621 "@dadcue Pain is sort of a relative thing. I had a horribly painful surgery at age..." + (show)

@patrick031621

I am a nurse but not a pretty one. I'm sure the nurses that I worked with would have enjoyed taking care of you. I like your perspective about pain. There are limits to what a nurse can do for pain but no nurse wants a patient to be in pain.

patrick031621 | @patrick031621 | 2 days ago

All nurses are pretty.

jerrydanhuffman | @jerrydanhuffman | 1 day ago

Each patient's circumstances are unique as are the decisions they make for treatment/surgery. I had surgery 16 months ago at 80 years old for an ileum tumor that involved short sections of both the small and large intestines and the valve. Two affected and nearby lymph nodes were also removed. I was discharged from the hospital on the 3rd day following surgery, after having a very normal bowel movement, my very first one in a very long time. My surgery was "robotic" with 7 incision locations over my abdomen. Pain was present but tolerable. My bowel movements are textbook quality except immediately following some but not all lanreotide injections every 28 days. Side effects from the injections are impossible to predict. I also take Creon as digestive enzyme therapy. I have 6-7 affected lymph nodes in the area of the small intestine that are considered inoperable. Cancer has been described as "stable" and not spreading. My first lanreotide injection produced intolerable side effects that lasted for 2 weeks. I stopped taking the injections until I could get some answers from surgeon and oncologist. After 3 months of no injections, the surgeon convinced me to continue with lanreotide. I have been a patient at two different major hospitals (due to network problems with health insurance) in my city and neither cancer center has any experience with NETs. I am presently exploring a second opinion on diagnosis and treatment at Cleveland Clinic.

I wish the very best for anyone who has this quite difficult cancer. I am grateful for the wonderful sharing I've had in this Mayo Clinic forum. Thanks to each and everyone of you!