Short answer: Neuroendocrine Tumors and cancers (NET) are an extremely rare orphan disease.
Longer answer: It sucks to get an orphan disease that few doctors have ever seen. NET is less than 2% of overall cancers. It affects fewer than 200,000 people in the U.S. So it's a zebra, not a horse. (For those unfamiliar with medical euphemisms, if you look out in a farm field you expect to see a horse, not a zebra. Young doctors are famous for trying to say patients might have a rare zebra disease. The overwhelming majority of patients don't, they have much more common horse diseases.) In recognition of this fact, the neuroendocrine community uses the zebra to increase awareness about the disease. The symptoms of Neuroendocrine problems can show up anywhere in the body, most often in the gut. They are nonspecific enough they can be mistaken for many, many other things.
It sucks even more to get the even rarer aggressive, systemic form of an orphan disease. Rainè Riggs had the most aggressive, rarest form of a rare illness. Many Neuroendocrine carcinomas are idle and won't affect patients for decades. Hers was the aggressive form.
Even if she had been correctly diagnosed, Rainè Riggs had very limited treatment options. We have no large studies on Neuroendocrine patients, and none of the existing treatments seem to help that much. And, it's important to realize none of her doctors did anything wrong. One study found that the average NET patient goes 52 months between symptom onset and diagnosis.
So, while we send our condolences to the Sanders family, maybe this is one zebra that we should start considering more as a possible horse. Or at least a giraffe.
Longer answer: It sucks to get an orphan disease that few doctors have ever seen. NET is less than 2% of overall cancers. It affects fewer than 200,000 people in the U.S. So it's a zebra, not a horse. (For those unfamiliar with medical euphemisms, if you look out in a farm field you expect to see a horse, not a zebra. Young doctors are famous for trying to say patients might have a rare zebra disease. The overwhelming majority of patients don't, they have much more common horse diseases.) In recognition of this fact, the neuroendocrine community uses the zebra to increase awareness about the disease. The symptoms of Neuroendocrine problems can show up anywhere in the body, most often in the gut. They are nonspecific enough they can be mistaken for many, many other things.
It sucks even more to get the even rarer aggressive, systemic form of an orphan disease. Rainè Riggs had the most aggressive, rarest form of a rare illness. Many Neuroendocrine carcinomas are idle and won't affect patients for decades. Hers was the aggressive form.
Even if she had been correctly diagnosed, Rainè Riggs had very limited treatment options. We have no large studies on Neuroendocrine patients, and none of the existing treatments seem to help that much. And, it's important to realize none of her doctors did anything wrong. One study found that the average NET patient goes 52 months between symptom onset and diagnosis.
So, while we send our condolences to the Sanders family, maybe this is one zebra that we should start considering more as a possible horse. Or at least a giraffe.
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| Image by kolibri5 from Pixabay |
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