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I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (51)Comment receiving replies
After what I learned in my second surgery, it should have never been done laparoscopically. All the smaller metastasis were missed and it spread through my peritoneum and mesentery. While I had no symptoms, in a few weeks to months I would have had a life threatening obstruction. I saw the pictures. Do the most now...you will never get younger or be healthier than you are at this moment. Plus Lanreotide affects the gall bladder so best to get rid of it now. I wish I had the open surgery at the beginning and may have never needed the second. I bless the second doctor at NIH for basically saving me. Those 5 years only gave it the chance to spread. But I am good now.
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@dbjoyce Agree! I had a small bowel obstruction in 2022, pathology confirmed SB NETS & 4 affected lymph nodes. Had a successful resection. Fast forward to 2024 PET scan revealed it was back with possible Mets. My NET specialist decided to do an outpatient peek & see laparoscopy to see what he was dealing with. Two weeks later I ended up having a major 7 hour cytoreductive/debulking surgery to strip/remove Mets of liver with triangle resection, 2.5’ lower colon removed, appendix, lower abdominal walls, gallbladder, diaphragm, peritoneum, mesentery mets removed & a repeat small bowel resection. Huge open surgery & somewhat painful recovery. However, I credit my NETS surgeon with having the knowledge to look first & get it all at once! I was started on Octreotide injections & have remained clear for the last 2 years.