Should I see a NET specialist?
In January 2020 I had a distal pancreaectomy to remove a malignant non functioning pancreatic tumor. It was well defined; local lymph nodes clear; ki 67 >2. Every 6 months I receive a pt scan which I discus with my surgeon’s PA. Should I also be consulting with a Net specialist?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Yes, absolutely seek out a multidisciplinary NETS team. I see one at UCLA and they work with my local oncologist so I don't have to drive up to LA all the time for my octreotide injections. I do meet with both a thoracic oncologist and interventional radiologist at UCLA by video after each set of scans. Very convenient. My local oncology team was not familiar with NETS and all the treatment options. Check out LACNETS.org for a lot of info on NETS including video presentations by many of the NETS specialists in the country. NETS is kind of a tight community since it's less common. A NETS specialist will be a great addition to your team! Blessings to you!
Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested a Net specialist. I will definitely check out LACNETS. Blessing and good luck to you!
@lizzyeastwood — I didn't know you were going to Mayo. They do have a NETS program. There is a NETS specialist at Mayo that has videos on LACNETS.org his name is Thor Halfdanarson medical oncologist and pancreatic NETS is one of his specialties. Maybe your doctors are part of a NETS team or consulting with their NETS team and just haven't told you that? You might want to ask them.
Check out this website that lists the mayo doctors and their specialties. Look up your doctors to see if NETS is one of their specialties.
Thank you for all of that information. I do not have a nets specialist, so I’m just going to request an appointment with one. I think I just slipped through the cracks.
Have you been diagnosed with a NET by Mayo?
The answer is hell yes! Sorry for the dramatics, but it is that important to get a NET Specialist that works within a Multi-Disciplinary Team. Please let us know what other questions you may have along the way. We are all here to help each other out. We got this!
So we want a NET specialist on our care team even if we don't have NETs? As a Mayo patient, I am all confused.
You only need at NETS specialist on your team if you have NETS. 🙂
@californiazebra thanks for the clarification
LACNETS is having their annual NETS virtual conference on Saturday 6/17/23 from 8:00-1:00 PT with many NETS specialists speaking. You can register for free at their website LACNETS.org
Specialists from top facilities include medical and surgical oncologists, radiation, interventional radiology, gastroenterologist, etc. They'll discuss terms and concepts, surgery, imaging, treatments, clinical trials, etc.