Non-Doctor Dayna here with an unsolicited but hopefully helpful PSA:
The terminal ileum is where Paul’s cancer started. (A part of the small intestine.) And that single tumor has grown into a Stage 4 monster that has managed to spread to nearby lymph nodes, his peritoneum, mesentary, and now is responsible for a minimum of 15+ tumors spanning across both lobes of his liver.
Neuroendocrine tumors of the terminal Ileum are known to be INCREDIBLY difficult to find and diagnose due to the fact that the “non-functioning” type rarely produce symptoms — minimal and mild symptoms, if any at all. They start SMALL and SNEAKY, and are masters of the slow game. Low grade NETs can grow so slowly that they sometimes take 5-10-20 years to produce any symptoms or be diagnosed. They will not be detected by routine bloodwork. They may not be even be picked up on a CT scan if they are small enough and hiding well enough. They have the potential to spend years spreading through your body without so much as a stomach ache.
Enter: The colonoscope. (Or I guess, let it enter you. 🙃)
If we can give you one suggestion that we hope you will take seriously, it would be this:
When you are scheduled for a colonoscopy, please be sure to request (rather, demand) that the procedure includes taking a look at the “terminal Ileum.” The terminal ileum is a located where the small intestine meets the colon, and it is accessible via colonoscopy. Believe it or not, looking in the ileum is NOT always standard practice for routine colonoscopies. However, from what we have been told, the ileum is quite easily accessible and only takes a few more seconds/minutes during the procedure.
Since these specific tumors do not usually produce many symptoms, and many times are only found during scans or surgeries for unrelated issues, I can’t help but feel checking the terminal Ileum during a colonoscopy should become standard practice. But since it’s not always the case… ASK FOR IT.
As Jim Cody Williams says in the movie Dodgeball… “Get in there nice and deep like.”
Dayna 💛
IMPORTANT DISCLAIMER : We are not doctors. We are just normal, everyday people who are sharing what we’ve experienced, in hopes it might help someone else. Nothing in this blog, or anywhere on this website, should be substituted for professional medical advice. Perform your own fact-checks, make sure you do your own research, and consult with the best doctors you can find. It’s also INCREDIBLY important to note that no two NET Cancers are the same, and just because something did or did not happen to Paul, or does or does not work for Paul, doesn’t mean it will or will not work/happen the same way for someone else. Everyone is their own unique case, and every body responds differently to the cancer itself, as well as to the treatments. If you have a NET, please do NOT jump to conclusions based on Paul’s story. We’ve read many stories like Paul’s, but we’ve also read many miracle stories. We strongly encourage you to take this blog as an individual case study, and not as a prognosis for your own health.
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