I saw the surgeon. More confused than ever.

@amongst That's great that you have a specialist, because treatment with an unknown primary adds an additional challenge. Please keep us posted on how everything goes? I am fortunate to have great care at Mayo Phoenix. I have also been living with a 4cm PNET that has spread to my bones as well as my liver for the past 3.5 years. Without the expertise in treating NETs, I wouldn't be alive.

@tomrennie That’s wonderful! It sounds like you’re getting great care!
My cousin was diagnosed with NETS about 17 years ago & treatment has come so far since then.

@amongst I am very fortunate for my care thanks. Wow on your cousin. A lot has changed in my 3.5 years. I can only imagine how much has changed in 17 years? Thanks for sharing that. I really appreciate it. What an inspiration. Is your husband's doctor Dr. Halperin? Someone recently commented that he is her NET specialist in Atlanta and spoke very highly of him.

@tomrennie My husband’s doctor is Dr. Kooby.
We have only begun this journey with NETS. And you’ve been on it for over 3 years! I hope you are able to get surgery soon after your next scan.

Wow, there are many comments here that actually don't pertain to my post. But I will update regardless.
Much has not happened since my post. I've had many tests but nothing conclusive. Every result is different. My Confidence is almost nil.
A ct 6 months ago showed a lesion in the small bowel. Ive been on lanreotide all that time. A recent ct showed changes and now there is bowel wall thickening. I'm due for an ercp to remove hepatic duct stones. I have gastritis, and an EUS showed a 1cm nodule in the tail of my pancreas. The CT showed a lesion in my decending colon as well. I'm disheartened because every test shows something different or new. And yet, not treatment. I am unsure of any treatment or plan. Surgery has been hanging over my head for 6 months with no answers. I'm getting depressed and feel like saying *!*@% it. There is very little communication nothing about this seems right.

@amongst Dr. Kooby has an amazing resume. That's great. I read that he has expertise in minimally invasive robotic surgery. Will your husband's surgery be robotic? Open? A combination of both, since he will be looking for a primary?
I am not a surgical candidate. My cancer is not only in my liver and pancreas, but it is also in my bones. There is too much to cut out. Once the chemo reduced the primary tumor's size, and reduced the lesions' sizes and numbers throughout my body, we now just want to keep everything stable with maintenance chemo. That has worked for the past 2.5 years.

@carver1164 It can certainly get frustrating. I'm in the same boat as far as tests and interpretations. I suspect these healthcare professionals are simply seeing your results differently and therefore interpret in a different way. Every CT, PET, MRI I've had has been reviewed, analyzed, and then summarized by a different Radiologist, Surgical Oncologist, etc. In the summaries they point out different things in those scans. Tumor sizes change of course, but I have a 18mm kidney stone that's mentioned sometimes. Possibility of fatty liver disease mentioned once. Spinal column wear and tear mentioned once. I've had 10 scans at least so you get the idea. Your condition isn't coming and going, it's the interpretation that changes.

Now as far as when to do surgery, I would not suggest being in a hurry to do something. There are always risks and possibilities that you might not be aware of. Good luck to you.

Wow, there are many comments here that actually don't pertain to my post. But I will update regardless.
Much has not happened since my post. I've had many tests but nothing conclusive. Every result is different. My Confidence is almost nil.
A ct 6 months ago showed a lesion in the small bowel. Ive been on lanreotide all that time. A recent ct showed changes and now there is bowel wall thickening. I'm due for an ercp to remove hepatic duct stones. I have gastritis, and an EUS showed a 1cm nodule in the tail of my pancreas. The CT showed a lesion in my decending colon as well. I'm disheartened because every test shows something different or new. And yet, not treatment. I am unsure of any treatment or plan. Surgery has been hanging over my head for 6 months with no answers. I'm getting depressed and feel like saying *!*@% it. There is very little communication nothing about this seems right.