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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET. Metastasis to my liver and lymph nodes. I am non surgical candidate as my primary tumor is encapsulated in the mesentery. I started monthly lanreotide shots in August of 2023. I was primarily asymptomatic but presented with what appeared to be a gallbladder attack. With further testing the primary NET was found. All in all my treatments are going well. It is hard to determine if the symptoms I am experiencing are related to the disease, the treatment or self inflicted if I eat incorrectly. I have been utilizing this resource for quite sometime and find it very informative and supportive. I am being treated at Dana Farber/Brigham & Women's in Boston.
Replies to "I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET...."
Connect
I appreciate you adding information about your journey with NETs to this discussion group, @quinnie2023. I'm also happy that you mentioned that you find Connect to be informative and helpful.
Being asymptomatic is a common theme for many of us. I've had three surgeries of the upper digestive tract for NETs, while being asymptomatic.
I see that you mention that some of your current symptoms might be related to possibly eating incorrectly. Eating appropriately for the disorder, is important for all of us with digestive tract issues. What type of eating plan has been the most helpful for you?
It sounds as if you are getting good medical care. There are several posts on liver NETs that you might find interesting. Here is a link to several of those posts:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Liver#discussion-listview
I look forward to hearing from you again. Will you continue to post as you gain information or have questions?