I saw the surgeon. More confused than ever.

@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?

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.

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.

Thank you. I would never show them my anxiousness. I trust them completely. I'm just the type that when there's a lump, bump, or mark, I want it out. I know that this is intricate, but I had no idea how so. It was a very overwhelming day.

I am glad that it has helped. It is very confusing. I got diagnosed in 8/22. I have done a lot of homework and learned a lot since then. Engaging and listening to folks on here really has helped too. People here have been there, can relate, and also can share their experiences. You are not alone. Great on the octreotide. I know that it has helped a lot of people with symptoms. The gallium pet scan that I get lights up like a christmas tree unfortunately. Hopefully yours is a dimly lit 8mm bulb that just needs to go bye bye. I am hoping for you. Please keep us posted and vent anytime you want. You have to let it out somewhere. For me, this is the best place for it.

I totally get the "Get it outta me" mentality. As others have said, due diligence is your friend. And hopefully the octreotide will give you relief in the meantime.
Exactly what type of pet scan are they proposing and what type have you had before? There is a net specific pet scan called a gallium 68 (ga68) or the same type of scan but done with copper. Other pet scans may not reveal nets while the gallium usually does

Hi...I had the gallium PET. It was negative. But a CT enterography found it...
I'm not sure what the future PET is. I see a different endocrinologist (my referring doctor) on Monday. I assume for the octreotide...not sure.
I will ask him all the questions

Good luck. Let us know it goes. Ok?

All the above comments are great. However, I would add that maybe it has to do with your insurance coverage. I had a 2.5cm NET in my SI with similar mets to you. After 3 months of Lanreotide and biweekly extreme bloating and vomiting I went to the ER where a CT scan with dye revealed a full blockage leading to an emergency operation removing the NET, 8 lymph nodes, GB, 10in of SI. You may have a partial blockage at times(things move around) causing your pain. You need a NET Specialist that knows the questions to ask you and how to work with your insurance. I don't think your specific doctor can coach you on symptoms. Ie insurance regulations etc. in your situation a second opinion could help. I got a second opinion for a neighbor oncologist and it frankly saved my life. 2 yrs, 4months later on monthly Somatuline Depot shots and I feel great and I'm very active. I wish you the best.🙏

You can ask about the insurance. Some companies require the oncologist to go through a process with prescribed solutions. The system is not perfect so you have to be your own advocate.