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.

An unanswered NET cancer question I’ve been writing about NET cancer for nearly 25 months. But yesterday someone asked in a search that brought them here, “How does neuroendocrine cance…

One thought on “Update”

  1. So a good friend asked me why they couldn’t just look for a specific set of endocrines and see if the levels were all appropriate. That sounds so logical to me. Here’s my response:

    I believe from my reading that there are dozens of endocrines, and no doctor I’ve yet spoken to has said “here’s a list of what we can look for.” Generally they’ve dismissed my questions about this (and Michael’s too) with a pat on the head and change of subject. I have for thirty years been acutely sensitive to serotonin, and since August have been given meds and dosages as if I was not. The symptoms I have charted may relate to a number of different endocrines, but EVERY DOC I’VE EVER TALKED TO LITERALLY WAVES OFF SYMPTOMS OTHER THAN PAIN except the psychiatrist. Bless her heart. I won’t go into a list of those other symptoms, but they involve a lot of bad thoughts and smells and time wrapped around a toilet…

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