Today, I met with Dr. Eric Liu and discussed my GA-68 scan results. Both quite positive and surprising results left me feeling very happy. It could have been much, much worse.
- Found my primary tumor after 6 years! Instead of a mid-gut carcinoid, I am now a pNET (pancreatic neuroendocrine tumor). I did not expect that. Although this is what killed Steve Jobs and is very often more dangerous than mid-gut carcinoid, it is not a great worry for me because it is small and at the very tail of my pancreas. Dr. Liu says my pancreas looks as healthy as his.
- There is some progression. There is some spreading of the disease to several places in my body. Dr. Liu calls them freckles. Nothing very serious it seems.
- There are small tumors in my bone in a couple of places. The bone above my eye and two places in my spinal column (in bone, not on spinal cord! Whew!)
- The CT scan was wrong last November. The tumors that did not show on that CT scan, though they had appeared in earlier scans, are still in my liver but not looking very active.
- The nodules on my thyroid did not light up on the scan. This means that they are not NETs. I think Dr. Liu is convinced that they are a benign form of thyroid cancer. We will continue to watch them.
We will change surveillance to a CT scan once a year and continue with the Sandostatin which is still working. If I get sicker or have more pain, the good scan indicates that I am a good candidate for PRRT (Peptide Receptor Radionuclide Therapy). PRRT works identically to the GA-68 except the gallium 68 is replaced by lutetium 177 (Lutathera) which is much more radioactive and thus capable of killing the tumors. It should be approved in the U.S. within six months which probably means that I can avoid more surgeries.
You can find my explanation of what a GA-68 Netspot scan is here: About the GA-68 Scan
EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”. The best resources for this that I can find are: Carcinoid Cancer Foundation: GA-68 Locations, Northern California CarciNET: searchable map of the U.S.
All in all, I should be able to get on with my life for a few years with minimal interference from this particular cancer.
May we all have the best possible outcomes,