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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)Comment receiving replies
Hello @marplute and welcome to Mayo Connect. I am sorry to hear of your NET diagnosis this year. I've had three surgeries for NETs and I understand how surprising this is. My NETs were quite small with no lymph node involvement and no metastasis and yet I had three surgeries in 2003, 2005 and again in 2016. There isn't any way to know when another one might show up. It sounds like you had clear scans after your surgery which was good.
As my NETs were in the upper digestive tract, I have upper endoscopies every other year and blood work yearly. I'm sure your medical team will come up with a follow up schedule for you as well.
You mentioned that you had lower stomach pain for several years. Is that now resolved?
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Yes in November they took out my gallbladder thinking that is what the pain was. Then December 1 month from the day that my surgery was for the pain was back and so bad I couldn't stand. They did a CT scan and found the metastasis on my lower bowel on the outside of it and then the next day I went in for surgery they removed it and have had no pain since it was removed. I have had 24 hr urine test and blood test and a pet dotate scan. Now it has been a year the want to do another CT scan to see why I sweat profusely. I haven't had any side effects yet to my knowledge because I had the pain for about 5 years before them finding it. I will keep an eye on what the oncologist has told me to watch for but I just wish they had a specialist in Utah for this neuroendocrine.