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After initial tests/consults at Mayo: When does NETs treatment start?
Neuroendocrine Tumors (NETs) | Last Active: Sep 25 10:18am | Replies (6)Comment receiving replies
I had a very small carcinoid tumor removed in 2015 on my first colonoscopy that was removed without major surgery. On August 8 of this year, I felt like I was having a gallbladder attack or an appendicitis. Instead, two neuroendocrine tumors were found on the CT scan. Recto Sigmoid Junction on the outside of the colon and Mets to the liver. Further confirmed by a special PET scan and liver biopsies. Both sites at this time are believed to be removal by surgery. If anyone has had either of these NETs, I'd like to know how treatment went for them and how soon treatment started after Mayo's initial consults and repeat tests are concluded.
Replies to "I had a very small carcinoid tumor removed in 2015 on my first colonoscopy that was..."
@cewald62, my wife has NET in the liver still after finding the primary tumor on the pancreas in April 22. Surgery wasn't an option at first, so she did 9 months of chemo (CAP/TEM), which greatly reduced the amount and size in all areas. This allowed for surgery and primary tumor, spleen, and gall bladder to be removed. During all this she was on monthly Lanreotide injections from initial diagnosis. Then our team had her do 3 cycles of PRRT treatment which further reduce the amount and size. Right now we are monitoring the NET, with MRI's every 90 days. In response to your question on Mayo, we only visited Rochester, to get a 2nd opinion on an option our team is suggesting of doing a liver transplant, so I can't respond how soon treatment started with them. With our team, everything went pretty quick once the biopsy's were completed and read. Were are in a good place now, just monitoring and preparing for our next steps if needed. Feel free to ask any other questions you may have and we would be more than happy to share ideas in all our fights against NET. We are all on the same team. We got this! 🙂
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We have a number of members in the NET support group who have discussed their experiences with Mets to the liver. Here is a link to many of those posts,
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Liver#discussion-listview
I would encourage you to read these posts and then feel free to ask questions or make comments by clicking on the "Reply" button and posting your thoughts. You will see that there are several treatments for Mets to the liver, including liver embolization.