Yes, in August.
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Yes, in August.
I last saw Dr. Kasi my net specialist in Feb. just before he left Mayo and Dr. Stone I believe is the new net specialist. I've been seeing a doctor in hematology/oncology that's a internal medicine doctor. She's referred me to dermatology, spine medicine, pain clinic, pain rehabilitation/psychology, gynecology. She just referred me to another psychology Dr. for an evaluation hoping they will help discover a anti depressant better suited based on blood work. I don't have cancer but my body screams otherwise. My Pnet was a low grade pancreatic neuroendocrine tumor-well differentiated w/ 1 node out of 12 positive. I still have the same symptoms when I came to Mayo.
I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed July 2018. I'm struggling mentally & physically with persistent symptoms. Abdominal and back pain, freq. urination, freq. thirst, dehydration, loss of appetite, whole body aches w/burning, night sweats, fatigue, weakness, ringing in my ears. Sometimes nausea, headache, insomnia, indigestion, sore throat, sinuses run or stuffed up. I feel like I'm stuck in a bad nightmare. I do everything I can to eat well, stay hydrated, stay on a sleep schedule etc…but it doesn't matter what I do the problem symptoms persist to the point that I'm very depressed. I even took Elavil for months. It helped my mood but I experienced side effects and I discontinued. I'm so frustrated with my health & doctors.
After many years of being misdiagnosed I became a patient at Mayo in Dec. 2017. I was diagnosed w/a pancreatic net @ Shands UF in Oct. 2016 via EUS and biopsy. Shocked when UF said not to worry, it's a slow growing tumor. I had soo many symptoms and years of painful bouts of pancreatitis. Myself not knowing it was pancreatitis and that it was not all in my head. I spent 2016-2017 researching my symptoms and w/multiple GI dr.s finally got answers and demanding a referral to Mayo. I found Connect when I became a patient but due to surgery Jan. 2018 then a post op fluid collection July 2018 I've been to ill with recovery and symptoms to Connect. I apologize for the long delay in my reply.