I know my cancer diagnosis has bumfoozled the heck out of me. One of the things that’s been so confusing is figuring out the connection between the fairly crappy survival rate (20-25% for five years) and the actual cause of death for patients with my diagnosis. Because the cancer grows slowly, and I will have CT scans every 90 days for a year or so, it’s unlikely that the neuroendocrine cancer itself will kill me. It’s likely to be liver failure, a blood clot, or something else. But regardless, I keep asking the docs if it’s really gonna be just five years, and the answer is yes, over and over. Damn.

If the docs who did the first cancer surgery had known more about NET cancer, or pancreatic neuroendocrine cancer, they would have tested the tumor cells to see which endocrines are being produced by my cancer; it’s frequently complications with the overproduction of these chemicals that is the cause of death for patients like me. But the docs didn’t check, and I won’t be able to find out until I grow another tumor. This story is about a woman whose neuroendocrine cancer involved the overproduction of serotonin: http://walkingwithjane.org/…/…/25/net-cancer-what-kills-you/

I hope to spend a little more time with my oncologist in June. I have never yet had a doctor sit down with me and explain the type of cancer I have. I have had several doctors scold me for looking up information on the internet, though. Go figure. My pain management doc recently explained to me that oncologists sometimes limit the information they give to newly-diagnosed patients so the patients don’t get overwhelmed. hmm.

I have been begging for information for months, after years of begging for help. I’m discovering that many, many women are going through this too.

Cancer sucks. Our healthcare system kinda sucks too.