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Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: May 5 8:09am | Replies (164)Comment receiving replies
@tigerseye
As I'm not a medical professional, I can't interpret the reports. It would be interesting to know what other tests you have had related to a NETs diagnosis. Have you had the 24-hour urine test or any blood tests related to your serotonin levels?
Here is a link from the Mayo Clinic website about the diagnosis of NETs,
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/diagnosis-treatment/drc-20465865
Here is a link from the Neuroendocrine Tumor Research Foundation with a lot of good information about NETs.
https://netrf.org/for-patients/
I'd encourage you to read the information so that you feel better educated as you visit the specialist. Having some background understanding of NETs is important. This is a rare cancer, and it is important for us to advocate for the best treatment possible.
Will you continue to post with your questions, concerns as well as updates?
Replies to "@tigerseye As I'm not a medical professional, I can't interpret the reports. It would be interesting..."
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@hopeful33250
Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The site is a WEALTH of information and what I especially appreciate are the videos available on YouTube. The videos are typically the copy of a live event, whether it be a conference or a NET specialist addressing a specific type of NET, e.g., small bowel (SB) NET, or a pancreatic or lung NET. The information is invaluable, especially for those who have NO IDEA what to expect when diagnosed with NET.
They have videos such as: Neuroendocrine cancer 101... the most basic of information and advance from there; and while reading questions from many Mayo Connect posters, they appear to be floundering and have no idea NETRF should be, in my opinion, the 1st place to use to begin learning about NETs.
While the Connect moderators are okay, your posts are the only ones I've read that offer other resources other than Mayo (which is pretty poor dishing out info, IMO). NETRF is a one-stop shop for finding accurate, in-depth, NET specialist(s) medical information).
I've pretty much given up reading Mayo Connect due to lack of information - seems more like the blind leading the blind, desperately wanting help and support. Connect is good for support, not so much for 'real' educational NET info.
Sorry to be a Debbie Downer, and this post IS only my opinion, but I haven't learned one thing new about NETs from Mayo Connect, 🙁 (and I'm an "info junkie" who researches everything I can, including journal articles from reputable sources using PubMed, nih.gov articles, etc.)