← Return to NET symptoms despite follow-up lab work ok

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@smt

I agree with other comments you need to respectfully push your care team for possible treatments that will help you have a better quality of life. All of my lab work (blood and urine) was always fine when I had a NET on the head of my Pancreas. My symptoms started in 2006, wasn’t diagnosed correctly until 2012 as all my lab work was always normal. The only reason I was diagnosed is due to a family member who is a Dr. said I needed to ask my GP to send me for a CT scan. My NET showed on both CT and MRI but it also didn’t light up on Ga-68 PET scan. NET was confirmed with biopsy after it was removed. My symptoms first started with diarrhea so I was diagnosed with IBS, after three years my symptoms progressed to include nausea, balance issues, extreme fatigue, anxiety (which I never had any anxiety ever before), neuropathy, I didn’t get headaches until 2018. I had surgery in 2019 to remove the primary NET from my pancreas and two tumors from my liver. All of my symptoms were gone after surgery and have not returned. The anesthesiologist said my tumor was functioning during the surgery, so I don’t know why my lab work always came back normal. I think a lot of times Dr.s don’t realize how bad the diarrhea is, I know for me it impacted my whole life for over 10 years. Hopefully you will find something that will help you.

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Replies to "I agree with other comments you need to respectfully push your care team for possible treatments..."

I was interested in peoples' stories if anyone else had similar experiences in being ill, but not having any test results to substantiate their symptoms. In January, I told my oncologist that I thought it would be wise for me to pursue consults with various doctors in different fields to explore the possibility that my symptoms are related to something other than NET. So far my lab work has been fine and the feeling is that my symptoms are related to the NET. I am sorry for what you had to experience, and for years of misdiagnosis. I tell my doctors that I need to be proactive in my care, but I think I need to be less polite and more aggressive in requesting more testing. Thank you so much for sharing your story.