I saw the surgeon. More confused than ever.

@lindabees wowza!
Thank you so so much for this. Such a valuable share.
I will definitely look i to this.
Thank you

@carver1164
I understand that is an excellent cancer center!
This may be another option which I found on the NANET site. There is a newly established multi-disciplinary specialized neuroendocrine clinic at the Sunnybrook Odette Cancer Center in Toronto: Here's some info on a NET specialist there that I copied from the NANET site. http://www.nanets.net :

Simron Singh, MD, MPH, FRCPC
President

Medical Oncology, Odette Cancer Center at Sunnybrook Health Sciences Center

Dr. Singh is a medical oncologist at Odette Cancer Center at Sunnybrook Health Sciences Center in Toronto, Canada. He is also an professor at the University of Toronto. Dr. Singh completed his B. Sc as well as MD at the University of Alberta in Edmonton, Alberta. He completed postgraduate training in Internal Medicine at Queens University in Kingston, Ontario, Canada and Medical Oncology at the University of Toronto. After completing his clinical training, Dr. Singh completed his Master's degree in Public Health from Harvard University in Boston, MA, USA. His research interests include neuroendocrine carcinomas as well as population health and cancer care utilization discrepancies.

Currently, Dr. Singh is co-head of a newly established multi-disciplinary specialized neuroendocrine clinic at the Sunnybrook Odette Cancer Center in Toronto, one of the first of its kind in the region. He is involved in numerous activities in the care of neuroendocrine cancer including the role of ki-67 as a prognostic marker and the utilization of health care resources in the diagnosis and treatment of NET patients.

Thanks for your reply.
I am seeing an Oncologist at the Princess Margaret Hospital, Toronto. Best in Canada. I'm don't know if she specializes in NETS, but I think its as close as I can get.

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.

@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.

@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.

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.

@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.