– Updated 6/26/26 –
Looking for a quick review of my cancer journey? You’ve come to the right place!
What kind of cancer do I have? Neuroendocrine (I’ve also had thyroid cancer, but after a thyroidectomy in 2016 there have been no further complications). Neuroendocrine cancer is considered a rare cancer, affecting 6 in 100,000 people worldwide. About 12,000 people have it in the United States. Neuroendocrine cells are sparsely scattered throughout the body. They are like nerve cells (neurons), but they also make hormones like cells of the endocrine system (endocrine cells).
In total, how many NET tumors have been removed? 22
How big was the largest tumor removed? In 2015 my largest tumor removed was 1.8 cm. In 2022, the largest was 2.7 cm.
What stage am I? Stage Four (once a person is in Stage Four, always in Stage Four, no matter the treatments). Technically I was already in Stage Four at the time I was first diagnosed with cancer in 2015, because during that surgery they found not only my primary tumor in the small intestine, but more tumors nearby in the mesentery and omentum.
What is my life expectancy? Understandably, this is the BIG QUESTION to which most people want to know the answer. For most cancers, Stage Four is terrifying and indicates a swift journey to death, but in the case of neuroendocrine cancer, it is often it is considered relatively “slow”, even at Stage Four. Every NET patient is a little different however; NETs can change from slow to fast and vise versa, so our life expectancies vary. So far it seems my cancer is on the “slow” track, which is winning the cancer lottery, if there is such a thing. My oncologists do not want to venture a guess at this time, but of course it’s possible (hopefully not likely) that my cancer will decide to speed things up. Statistically, if a patient is going to pass away from NETs, it’s because of bowel obstruction, liver failure, or Carcinoid Heart Disease.
What’s my current treatment? My cancer is not the kind that responds very well with chemo or radiation, so surgery to “reset the clock” is my best option, although a new treatment called PRRT is very likely in my future as well. Since I’m already metastatic, it’s a game of whack-a-mole on the tumors, and for the rest of my life there will always be new microscopic ones growing. I will have another surgery when the tumor load is large enough to merit it, and that will likely be the pattern for the rest of my life. The good news is that the science is always evolving, and I may have other treatments in the future! In the meantime every month I get a shot of 120mg Lanreotide, which is a somatostatin analogue, which helps to slow the growth of the tumors that I currently have. Growth is so slow that currently my oncologist calls me “stable”!!
What is the “ribbon color” associated with neuroendocrine cancer awareness? A zebra-stripe ribbon.
When was I first diagnosed? In 2015, at age 37.
How many surgeries have I had? Three surgeries.
- 2015: four neuroendocrine tumors removed
- 2016: numerous thyroid tumors removed (they took the whole thyroid out)
- 2022: 18 neuroendocrine tumors removed.
How big is my biggest scar? It is 9.5″, from sternum to pelvic bone.
When was my last DOTATATE PET scan? February 10, 2026. My next MRI will be in fall 2026.
What was my primary NET tumor location? The small intestine.
What is my Ki-67 index? 2015: 2%, 2022: 2% and 3.5%.
What is my grade? In 2015 it was “1”, in 2022 it was “2”.
Are my tumors “functional“? Yes.
What’s the latest update? The homepage is the best place to look.
I’ll update this page when I have anything significant to add. To start at the beginning at my story, go to the very first post.
PS – T.L.D.R. means “Too Long, Didn’t Read”.
Cancer Story... Go! 
Leave a comment