Neuroendocrine cancer kills.
I know this because it killed my wife.
I want the day to come when this disease will not kill—when it will become a manageable annoyance at worst—and easily detected and cured at best.
Neuroendocrine cancer kills because of our ignorance.
We don’t know to look for it.
Because young doctors are trained to look for horses when they hear hoofbeats—and not zebras—and most doctors see this as a rare disease, most primary care doctors don’t know much about it. It is very hard to detect something you are not looking for.
This is further complicated because, depending on where the tumor is and what hormone it is secreting, it can look like lots of other things: IBS, anxiety, heart disease, asthma, insomnia, low blood pressure, pancreatic cancer, prostate cancer, lung cancer, just to name a few.
We don’t know how to look for it even if we suspect it.
A normal CAT scan or ultrasound will not reveal a neuroendocrine tumor (NET) to any but the most practiced eye. The primary tumor rarely gets bigger than a lentil—and shows up on a normal scan just the opposite of the way a normal tumor does. An OctreoScan will light the tumors up like a Christmas tree, but you have to know to order it.
An upper GI or colonoscopy will rarely detect an NET because even those that form in the gut usually form on the outside of the intestines and colon—not the insides.
Finally, there are few widely available bodily fluids tests that can detect neuroendocrine tumors—and none that will detect all the different types.
We don’t know how to cure it if we don’t find it early.
If we discover this cancer early—very early—surgery can offer a cure. But most cases are not found that early. Then surgery, drugs and one form of radiation can slow the progress of the disease and ease the symptoms—but there is no cure.
Walking with Jane
My wife Jane and I discovered all of this the hard way. She had IBS for 30 years; she was diagnosed with anxiety; she was told her swollen feet were because she was on her feet all day. While her doctors chased horses, a zebra was kicking her to death.
I can’t blame any of her doctors: they were doing what they were trained to do.
I can’t blame the medical establishment: we diagnose so few cases each year that it looks like a zebra to them.
But this might not be a zebra at all—we are finding more and more cases every year–and one study says as much as one percent of all Americans may have a neuroendocrine tumor.
My wife swore she would beat this disease. The only way she could do that was to die and take it with her.
We want future NET patients to have other options.
You can help.
The Dana-Farber Cancer Institute has established the Walking with Jane Dybowski Fund for Neuroendocrine Cancer. The money raised will go to educate both doctors and the general public about this disease and help fund the research that will give us the tools we need to help end his disease.
