I had chronic pancreatis, abdominal swelling, nausea, heartburn, uncontrolled high blood sugars over 280-400 without cause, dizziness, loose stools, shortness of breath and feet would swell. I am not a drinker or smoker or drug user and rarely use over the counter medicines. I have lupus and fibromyalgia and thought some symptoms were from that
I kept pushing doctors to not write it off as IBS or gluten allergy or Silliac. I wouldn’t take the medicines they wanted me to for digestive issues and elevated blood sugars because I told them they were wrong. So after I went to a new gastroenterologist my other doctor referred me to (after he said my abdominal swelling was because I was aging like an old man and carrying my weight there even though I have very thin legs and arms) she did a colonoscopy and endoscope and ordered an MRI. The MRI showed a mass in my pancreas. Then I had a surgical biopsy and that specialist sent it it to pathology to see if it was a splenule or a neuroendocrine tumor. The biopsy seemed to support a splenule but was not definitive. Fortunately my gastroenterologist also consulted a oncologist because she thought it was the NET. Then I had a SPECT CT which wasn’t definitive so finally I had a PET Scan which my oncologist showed the NET like a glow bug. So he gave me options to wait and see or have it removed. My dad was adopted, I was in the military and exposed to who knows what (non combat) and I’m not a wait and see kind of person because if it was cancer, it doesn’t just go away if left alone. So I opted for the surgery in May of this year. They removed the last 1/3 of my pancreas and my spleen. Pathology showed the NET encapsulated the cancer and it had not spread. So for now I’m 8 weeks post surgery and will be followed up with scans and blood tests to hopefully catch anything else early again.
I hope this all helps. The best advice I can give is to listen to your body and gut and keep advocating for yourself.