Last week, on 11/7, I had an appointment with Dr Rodney Pommier, one of the godparents of NET surgery. He has authored papers, contributed to papers, spoken at every conference, helped found major NETs orgs (https://nanets.net/ specifically)and is quite the personality. As I am learning more and more about what I am facing, I hear his name more and more. In fact, out of the blue a friend reached out, told me her dad has NETs and Dr Pommier saved his life and is incredible.
Well, wouldn't you know it? He works at OHSU, Oregon Health and Science University which is where my medical team is and where I am being treated. So, since all of my new friends and support groups mention him, I set up time with him (quick thought here, I do what I want when I want to, I don't always wait for others to recommend to me what to do!) to meet him, learn more about his approach and discuss my case (it turns out my medical oncologist was all in favor of my meeting him and said this is about the time he usually makes an intro to him anyway).
Honestly, he was and is awesome. HUGE personality (which I love). We met with him for an hour or more and we learned a ton. Unfortunately you can't record these visits but it was so valuable. He reviewed my CT Scans with us, showed us the tumors, walked us through what he wants to do surgically and answered any questions. Basically, my tumors are in or around my spleen, pancreas, kidney and liver so those are the areas that he will focus on surgically. Its a big surgery and I am not looking forward to it but I know it will help me to get better. And I trust him to do it, which is beyond important (as does Krista).
Lastly, the image above is an image of what's called a Dotatate PET Scan. I had an IV put in and they put a radioactive tracer in my veins through the IV. As it travels around the body, the tracer interacts with the cancer cells and causes them to "light up". So a lot of the spots and dark images are areas where I have tumors (some of the organs always light up. They are not going to scoop out all of my insides!) It's just a newer and very helpful way to determine where tumors are and where they came from.
That's the current surgery story. Dr. Pommier wants me to ride the chemo as long as it makes a difference, potentially 9-12 months from now before I have surgery. My medical oncologist thinks it might happen a little before that. The chemo seems to be working (Yay!) so lets get as much out of it as we can!