neuro endocrine tumors in small bowel, omentum, on ovaries, appendix

@matt76
Hi Matt and welcome to Mayo Connect. I know what those pains can feel like. They can be horrible. If you don't mind, I'd like to ask you a few questions to better understand her issues? What tests/scans led to the diagnosis of the neuroendocrine tumors... NETs for short? Were you told why the tumors are inoperable? What kind of doctor informed you of this? Is there anything else the doctor told you specifically about NETs? Thank you.

@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.

@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?

@matt76 Here is the resource to find a NET specialist:
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

@tomrennie thank you for the resource. We are in northern Florida and are blessed to be able to travel some if we need to. I’m an RN and work weekends so we can travel during the week. What is the process for a referral. I am told we need to go to the Mayo clinic in Jacksonville FL but I assume we need a referral

@matt76 Hete is how you get the Mayo process started. Let me know, if you have any questions.
http://mayocl.in/1mtmR63

@matt76 How is your godmother feeling?

@tomrennie better forba couple days then 1/4 of a biscuit sent her into agony this morning . Starting a food/drink/pain/treatment log to see what factors cause the most pain, and when. Thanks for checking, virtual appointment set up for 9th

@matt76 I wrote down everything too. You don't want to do anything that makes the pain worse. I gathered with some friends and family over the weekend for Easter. They were teasing me about eating from my little bag of Snyder's sourdough hard pretzels. I had forgotten about them. I also could stomach microwaved Superpretzels. I feel that the salt helped me retain water and stay hydrated. I live in the Arizona desert, so staying hydrated is very important. Good luck on the 9th. Who is that appointment with? I suggest preparing your questions prior to the appointment. You don't want to forget any. Do you keep an ongoing question list? Let me know, if I can help in anyway.

Hi @matt76

I am glad to hear that your godmother has an appointment on the 9th. Is this an appointment with Mayo Clinic? In the meantime, you might find this discussion on Connect helpful. It is titled "How Do I Eat After Digestive Tract Surgery?" Here is the link to that discussion: https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/

I hope that you get some helpful information during the virtual appointment. Will you post an update after her appointment on the 9th?