Connect
← Return to Feeling discouraged and too many specialists
Discussion
Feeling discouraged and too many specialists
Neuroendocrine Tumors (NETs) | Last Active: Jun 30, 2023 | Replies (30)Comment receiving replies
Hello @chana and welcome to the NETs support group on Mayo Connect. I can understand that you are scared and confused. NETs are a rare disorder, and it is always confusing when you have two different surgical approaches presented to you.
Were you given good reasons for both surgical options? I would like to invite @californiazebra to this discussion as she has been treated in California as well. Perhaps she can shed some light on your situation.
Share, as you are comfortable doing so, how this NET was discovered. Were you having symptoms? You mentioned that your NET is on the pancreas. Are you have problems with your blood sugar as well?
Replies to "Hello @chana and welcome to the NETs support group on Mayo Connect. I can understand that..."
Yes. My A1c is very low, suggesting hypoglycemia, yet glucose indicates prebdiabets. I eat very healthy, sugar consumption comes from a little fruit and very few carbs
Connect
Hi @chana
Sorry to hear about your new diagnosis. I see you are seeking treatment in Northern CA. I'm in Southern CA being treated at UCLA so I have no experience with treatment at the facilities you mentioned. I have lung NETs which can be treated differently than pancreatic NETs so those with pancreatic NETs may be better suited to address your specific questions about treatment options.
I would like to recommend LACNETS.org which is a NETs organization with a lot of presentations posted from various NETs specialists. They also have a lot of other resources at their disposal. LACNETS does not provide treatment. They are dedicated to NETs patient education and support.
https://www.lacnets.org/newlydiagnosed
You might want to watch the video "What is NET?"
There are other resources for the newly diagnosed on this page as well. The program director of LACNETS, Lisa Yen, her husband actually has pancreatic NET for 8 years now so she could be a great resource as well. I received an email from her when I first reached out. She's also a nurse practitioner.
You'll find that with NETs the treatment sequence can vary greatly by patient depending on case details. Here are some general thoughts about surgery from a NETs surgeon in Colorado.
Dr. Eric Liu The Role of Surgery in Neuroendocrine Cancer - 2 min. video.
https://www.lacnets.org/podcast22
Here is a podcast about pancreatic NETs -- all Q&A. One of the questions is when should a pancreatic tumor be removed. I'm listening to it right now as I type -- good stuff.
I hope you'll find some of this helpful. You're wise to seek more than one opinion, but definitely use NETs specialists that are part of a multidisciplinary team as general medical oncologists are not familiar with NETs. Pancreatic NETs will be treated differently than the more common pancreatic cancer and typically has a better prognosis. You may have heard recently that actress Maria Menounos announced she has survived pancreatic cancer. What most news sources failed to mention, is she actually had pancreatic NET not your typical pancreatic cancer. Yay!!!
Ask the NETs specialists to explain their rationale for the treatment sequence they are recommending. If two NETs specialists disagree, maybe you'll want a third opinion. They may be willing to do that virtually if they have your records in hand.
NETs is typically a more slow growing type of cancer which is good news for us! We discovered my 50+ lung tumors 15 years ago and I had all the respiratory symptoms for 30+ years before diagnosis, yet here I am. As they say, "It's a marathon, not a sprint" so expect to be around a long time with your new NETs family. Hugs, Zebra