Connect
← Return to Neuroendocrine Tumor - no treatment plan method
Discussion
Neuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: May 5 8:09am | Replies (164)Comment receiving replies
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.)
Replies to "@hopeful33250 Teresa - THANK you for posting the link to the Neuroendocrine Research Foundation (NETRF)! The..."
Hello @anon0995,
Mayo Clinic Connect is an online community, connecting patients and family caregivers with each other. You do not have to be a Mayo Clinic patient or caregiver to join the conversations. Community members share experiences, ask questions, find answers, give and get support and exchange vital information. Mayo Clinic values patient and caregiver knowledge and recognizes you as Experts By Experience.
Experience does not replace professional medical advice. It does not replace a diagnosis. It does not replace treatment. Mayo Clinic Connect does have Expert Blogs & Articles here, https://connect.mayoclinic.org/blogs/.
@anon0995 The mentors do post where you can find additional information .(other than Mayo). like you said everyone’s opinions are different and we seek information starting at all different levels of knowledge and education.. This site has helped me and guided me to other information sources as well. Also learning of other experiences it gave me more questions I could pass on to my medical team.. Have a wonderful day..
Connect
Hello @anon0995,
I'm so glad that you found the website helpful. Like you, I'm a visual learner, and videos are a great way for me to learn.
I joined Mayo Connect when I was facing my third surgery for NETs, and I found the support very helpful. Just to know that others had survived recurrences was encouraging to me. This seems to be true for lots of the members of our NETs group here on Connect.
Will you keep in touch and let me know how you are doing?