The International Neuroendocrine Cancer Alliance (INCA) and Carcinoid Cancer Foundation put out a call for NET patients and survivors to send in photo selfies with a downloadable placard that shows how many years it took to be diagnosed, the misdiagnosis, and actual diagnosis.
For me, it took over 5 years and countless failed CT, ultrasound and MRI scans that finally lead to a surgery for a suspicious complex ovarian cyst (read ovarian cancer possibility). It was during that surgery that my carcinoid tumor - that had perforated my appendix wall - was accidentally discovered and again misdiagnosed as recurring appendicitis until the biopsy came back.
After my carcinoid diagnosis, I went through my old radiology notes. Unbelievably, the three most recent scans unanimously, and erroneously, declared "appendix unremarkable." Granted they were looking for ovarian cancer - but what is truly "remarkable" is they missed a 3 cm tumor over and over again.
Had they found the tumor early, I would have had a simple appendectomy and been 99% cured. Instead, I was gutted like a fish (although scoped masterfully by my hero Dr Nash at Sloan Kettering) and lost 1/2 my colon and 20 lymph nodes with a subsequent infection, open wound care, and ongoing health issues.
It's still a struggle. I have a chronic condition that includes flushing, bone crushing pain, muscle weakness and a myriad of other not so nice things. Some symptoms are self-reporting and others are independently observable or in the labs.
The jury is still out - and arguing the old chicken and egg riddle ... Is my chronic health condition caused by carcinoid syndrome or was the carcinoid a by-product of some overarching mystery disease. I stopped spending my time trying to solve the "which came first" riddle and have instead learned to focus on trying to naturally manage my day to day symptoms and staying positive.
The carcinoid slogan is true "if you don't suspect it you can't detect it." Listen to your body - if you know something is wrong with your health but no one can figure it out ... encourage your doctors to look for the unusual - zebras instead of horses when they hear hoofbeats.
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