The best thing you can do is stay on top of the dr. appointments and try to be fully involved in any treatment decisions. Make sure you are having serial imaging (Pet Scan every 3-4 months). I have an endocrinologist plus an oncologist and the oncologist makes the big decisions. The endocrinologist monitors the hormones, making dosage adjustments along the way, but doesn’t really get involved with the cancer in general. The oncologist I see every 4 weeks and we go over Pet Scans, subsequent MRI’s etc. Please know that neuroendocrine cancers are generally slow progressing. I had a 10cm tumor removed along with the left kidney and adrenal gland in late 2016 at City Of Hope and now almost 7 years later am still hanging in there.
God bless you ☀️☀️☀️