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neuro endocrine tumors in small bowel, omentum, on ovaries, appendix
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (10)Comment receiving replies
@tomrennie she has had pain on and off for over 3 years. Multiple CTs and then an MRE lead to a diagnosis of intermittent small bowel obstruction. She underwent surgery on March 19, 2026 for the bowel resection and they found multiple tumors as I described. The biopsies came back as neuro endocrine. The general surgeon told us surgery was not an option due to the scattering of small tumors throughout the blood supply for the small bowel (omentum). There were tumors involving appendix, small bowel, omentum, and ovaries that they have mentioned. She has begin to have night sweats and her pain and food intolerance have been increasing for the past 6 weeks and she has basically no incision pain. She now has baseline pain that disrupts basic activities and her weight loss is at a point that is becoming alarming.
Replies to "@tomrennie she has had pain on and off for over 3 years. Multiple CTs and then..."
@matt76 Here is the resource to find a NET specialist:
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
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@matt76 I have been there. I got progressively sicker over three years and lost over 100 pounds prior to being diagnosed. I have a pancreatic neuroendocrine tumor that spread to my liver and bones making surgery inoperable. My digestive process wasn't working. My body wasn't getting the nutrition that it needed. It was very painful. I was finally diagnosed in 8/22. I will share what I have learned through my experience.
First, your godmother needs enough nutrition and hydration to get through each day. I lived on chewable gummy vitamins and liquid IV, a powder that you stir into water to stay hydrated, to survive. I also could stomach applesauce, sometimes with little pieces of a non nut based protein bar, most of the time. Getting some nutrition and staying hydrated helped with the pain. They also need to stay in her. Does she have diarrhea or is she vomiting?
Second, she should find a NET (neuroendocrine tumor) specialist as quickly as possible. NETs are pretty rare. I have learned that most oncologists aren't very familiar with NETs. They just don't see it enough. Where is she located? I can't find the resource at the moment to look up NET specialists by location. I will find it by the time you respond.
Third, in general, most NETs grow slowly. The fact that this has been an issue for three years might actually be a positive. Cancer doesn't fight fair and is very unpredictable. Until more is known, we can only work with what we know.
Fourth, does she have any abnormal swelling in her abdomen or lower extremities? When my digestive system was compromised, it caused swelling those places.
What else can we help you with?