Connect
← Return to Living with Neuroendocrine NETS, any advice?
Discussion
Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: Apr 11 12:20am | Replies (111)Comment receiving replies
Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.
With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?
Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.
I look forward to hearing from you!
Replies to "Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others..."
When you were first diagnosed, Did you have metastatis tumors in other parts? My husband has just been diagnosed and we are waiting to be treated.
Connect
Hello. I’m happy to have found this site. I was diagnosed with a neuroendocrine tumor in my stomach in May 2024. I had a total gastrectomy on November 13, 2024. The uncertainty of what is to come has been difficult for me. I have a PET scan scheduled for late April and am very anxious about the results. Also navigating the nausea and bile reflux has been challenging. I look forward to gaining new information from this group.