Frustrated with the medical establishment
After years of being told I had IBS, I became quite ill Summer 2021 with pain, nausea, bleeding in urine/dia., vomiting. Saw several MDs-"all tests normal" Saw my urologist who advised bleeding was caused by infection -primary's nurse had told me bleeding was normal. I scheduled an endos/colonoscopy with my new GI MD. A week before my procedures, had abdominal CT scan which was normal. After scopes, GI MD sent 19 biopsies to pathologist in Boston who diagnosed Neuroendocrine carcinoma of duodenum – small enough to be removed by endoscopy. Continued to be ill with pain, dia, nausea, fatigue, headaches, sweats went thru tests again – all is "normal" I told my oncologist I wish I felt as well as I appear to be "on paper". I will ask at my next oncology visit for an MRI instead of CT Scan which don't seem to be a definitive means of viewing this type of cancer. I viewed different websites nationwide trying to become knowledgeable in understanding my cancer. Mayo is the best. I never knew that there are certain foods to be avoided, I learned that only the pathologist can diagnose this type of cancer. I am very lucky that through a monitoring process, we can follow for any changes. I have not needed Chem/meds, etc and my heart goes out to all of you brave people that deal with these treatments. Because someone has MD, PHD etc after their names does not mean that your suffering is without cause, you just haven't found the source yet. The internet will not replace your doctors, but will enable you to be a proactive partner with your MD. Over the years I have been thru so many procedures, even surgeries related to my "IBS" and when I finally had a piece of paper that said "neuroendocrine carcinoma" I felt that I finally had proof that I was really ill.