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I saw the surgeon. More confused than ever.

Posted by carver1164 @carver1164, Sep 3, 2025

Hi everyone.
After a very long month, I finally saw a surgeon for my 8mm si NETS. I am symptomatic. I was totally expecting to get a surgery booked to only realize, the surgeon wants another PETscan. I'm not sure why, since my last one was negative. The tumor was found by CT enterography. Anyway, she is also putting me on octreotide for a month and will reassess my symptoms.
I'm confused about the PET scan, unless its for mapping. But if it doesn't show up like the last time.....and doesnt octreotide work right away? Why a month...I'm a bit frustrated.
Thanks for hearing me out

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carver1164 | @carver1164 | Sep 3, 2025
In reply to @tomrennie "@carver1164 I can feel your frustration with your words. I know how that feels. I was..." + (show)
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@carver1164 I can feel your frustration with your words. I know how that feels. I was also symptomatic and sick for a few years before officially getting diagnosed. Unfortunately, testing, diagnosing, and treating NETs is a process. It is also not a perfect process. Tests aren't perfect. Scans aren't perfect. Medical professionals aren't perfect. Mistakes do happen. It does take some trial and error. What is the harm of getting another ga-68 dotatate PET scan? What if it does find something this time? What if the octreotide clears up your symptoms? I personally want accurate information when determining the best course of treatment. I no longer care what I need to do or what test(s) that I need to endure to get it right. What are your thoughts on this?

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Thanks for your reply. It has helped. What you say makes sense. I want to figure this out but this cancer process is a bit confusing. I'm all for taking the octreotide. I wanted to try it months ago. The PET scan apparently is a different to the Gamma PET. I think its for mapping out the si.
Its not just a gallbladder.lol
Thank you for your words.

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jlsgt | @jlsgt | Sep 3, 2025

It takes time for due diligence. Sometimes surgery doesn't go as planned because there wasn't enough study before hand. Surgery is one option, you may have others. Octreotide may help your symptoms. Remember that every option has its compromises and understanding that with NETs is important. Be patient with your NETs surgeon/team.

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Turkey, Volunteer Mentor | @tomrennie | Sep 3, 2025

@carver1164 I can feel your frustration with your words. I know how that feels. I was also symptomatic and sick for a few years before officially getting diagnosed. Unfortunately, testing, diagnosing, and treating NETs is a process. It is also not a perfect process. Tests aren't perfect. Scans aren't perfect. Medical professionals aren't perfect. Mistakes do happen. It does take some trial and error. What is the harm of getting another ga-68 dotatate PET scan? What if it does find something this time? What if the octreotide clears up your symptoms? I personally want accurate information when determining the best course of treatment. I no longer care what I need to do or what test(s) that I need to endure to get it right. What are your thoughts on this?

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