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i am taking the shot "L"

Neuroendocrine Tumors (NETs) | Last Active: Apr 9 7:25am | Replies (23)

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I also have Neuroendocrine cancer of the mesentery. Also get the Lanreotide shots. Like you, I had several doctors tell me I was inoperable. I was unable to eat properly and had lost over 100 lbs due to the contrictions caused by NETs. Did not have much hope at that point. I was finally referred to the Rare Cancer Program in Metairie Louisiana. There, Dr. Beaudreaux and his team did a small bowel resection removing those constrictions. That will be 3 years ago this June.

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Replies to "I also have Neuroendocrine cancer of the mesentery. Also get the Lanreotide shots. Like you, I..."

@jlsgt I also went to east Jefferson rare cancer facility where I also had seen Dr Boudreaux. I was not impressed whatsoever. I was not referred to him, I discovered him on you tube. He just wanted to argue with me about who he just knew didn't remove my gallbladder. I never went back for more of that. I am now with the benson center at ochsner in Jefferson (multi disciplinary). Equally not impressed. They absolutely don't know enough about it. It's very stressful and answers are much like pulling teeth... they absolutely have no clue as to where this started. I believe in my thyroid . I had no clue that I had thyroid issues. I went for a general checkup and when they felt my neck the goiters were felt. Nothing visible. Next thing I know is that I needed a partial thyroidectomy. Never had been put on hyperactive thyroid medication. Then having trouble swallowing about 2 years later along with acid reflux and 2 esophageals. I had severe pain one morning excruciating like worse than childbirth. I addressed the issue with my gi alliance group and they did a ct scan the next day and the following day I received a call that I needed to get to the hospital immediately that I had bile duct blockage and ercp was performed and a stent was placed inside of me and removed 3 days later it was removed. Then along came pancreatitis, gallbladder removal by an oncologist surgeon. Then the excruciating pain came back and I surely knew it was not biliary blockage or gallbladder pain. It was kidney stones. Unbelievable . I went from east Jefferson to touro. Now with ochsner 4 years later to find out that I had a neuroendocrine tumor removed from my colon resembling a nodule. Scans, stents, stunts, stones etc..what a ride. I absolutely have no trust ,being on my 3rd opinion. I feel absolutely fine and never have been put on any medication except for heartburn and high blood pressure. I guess the bile duct blockage just healed on its own because for over 1 year i have not had another stent placed in me. Idk i just don't know