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Looking for a surgeon for carcinoid tumor in the mesentery
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (29)Comment receiving replies
@taly Another good good resource is the Neuroendocrine Cancer Foundation. Here is the link to their website: https://www.ncf.net/
Your Ki-67 of <3% is good. You are correct though. A Grade 1 doesn't equal a stage one. Kudos to you for addressing your GI issues as quickly as you did. I agree that your symptoms may be a clue that your tumor is functional. It is good to play it safe with a cardiac workup. I just had one myself. It is precautionary as a long term chemo patient. The scan will help determine your next steps. I hope it confirms what you already know and nothing else. Scanxiety is real, when waiting for the results. Have you signed up to the Mayo Clinic patient portal yet?
Replies to "@taly Another good good resource is the Neuroendocrine Cancer Foundation. Here is the link to their..."
How many scans should be done? I don't have anxiety about any scan. I only worry about what the scan might reveal. I had a routine annual CT-scan without contrast to monitor my kidney stones in 2025 which reported that there might be a SBNET in there. I thought all the labs they checked were over the top ... many hormones levels were "not good." A Dotatate Pet scan confirmed what was already suspected. A NET surgeon wanted a CT-scan with contrast prior to surgery but it was erroneously read as no evidence of SBNET. The NET specialist said there was evidence of a SBNET on all the CT-scans done since 2020.
The NET surgeon wants another CT-scan with contrast in November. The NET specialist also wants it done in November to see if Lanreotide is working. Another Dotatate scan early next year is also in the works.
Is metastatic mesenteric lymph nodes the same as mesentery involvement? There is also one distant metastatic site that lit up on the Dotatate.
Surgery is being recommended but I don't like that option. Surgery sounded like it might be "extensive" when they told me the list of things they might have to remove. Surgical anxiety is my thing especially without knowing precisely what all they might remove. I'm considering surgery but the following link makes me want to wait to see what lanreotide does.
https://pubmed.ncbi.nlm.nih.gov/35639999/
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The entire article is here:
https://academic.oup.com/jcem/article/107/12/3209/6594172
There is too much to digest especially since there is a concern that I will have a small bowel obstruction.
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@tomrennie I love the coined term Scanxiety. If someone thought that up, maybe you?, it means people experience it. That's comforting. I have people who love me who come undone if I mention I'm kinda scared. I find "Oh, yeah, that's normal," to be more helpful.
I started a new thread about being a newbie here. I so appreciate your welcome!