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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)

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@pennypowell

Hi,
My name is Penny. My wife, Cindy, had surgery on December 6 in which they removed two pieces of her small intestines. She was having repeated small bowel obstructions. She has had ulcerative colitis since she was 22 and she will be 62 on Thursday. At 52 they removed her entire colon and gave her an ileostomy. She still has UC in her rectum. This time they found a 3.5cm NET in one of the sections and in 2 of the 31 lymph nodes. Last week she did the chromogranin A test and her level is 421.2 ng/ml. She also takes pepcid and has since read that that and inflammatory bowel disease can cause increased levels. They want her to do a DOTATATE scan but due to ptsd she is not able to stay in the scan without having a panic attack. We have an appointment with a medical oncologist on Friday. Thanks for letting me join this group and I will pray for us all!

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Replies to "Hi, My name is Penny. My wife, Cindy, had surgery on December 6 in which they..."

Hello @pennypowell and welcome to Mayo Connect and the NETs discussion group. I am sorry to hear about your wife's NET diagnosis. It always comes as a surprise. The DOTATATE scan is one of the best ways to track the NETs. Is it possible for her to have a med for relaxation prior to the scan?

Do you have a list of questions for the oncologist when you meet on Friday?