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Is Essential Thrombocythemia a blood disease or cancer?
Blood Cancers & Disorders | Last Active: May 6 8:01am | Replies (179)Comment receiving replies
Without success, I've been looking for a great recent comment from nohrt4me. As I recall, Jean pointed out that while some doctors say ET has no symptoms, others admit that it does.
And that some doctors call ET a "disorder" and some call it a "cancer."
Because of the proto-oncogene MPL, my body is producing abnormal cells. I must take a chemo drug as long as I live. So to me there's no ambiguity: I have cancer.
If calling ET a disorder rather than a cancer makes anyone feel more positive about their lives, wonderful!
Unfortunately, though, this is not just a word game. That ET and other MPNs were long classified as disorders, not cancers, is why so few research dollars have been devoted to them.
And if MPNs are just disorders, then hey! Insurance companies can refuse to pay for treatment. This is a tragic problem in some countries.
Replies to "Without success, I've been looking for a great recent comment from nohrt4me. As I recall, Jean..."
@janemc I was diagnosed in 1993 with ET. At the time it was designated a “disorder”. Not sure what year it became classified a “cancer.” I never had symptoms until I progressed to MF one year ago. Took HU for approximately 3 years. Counts stable and decided to take myself off that drug when my doctor retired. For some reason, I remained stable and healthy—-maybe it was a mental thing! Perfectly healthy until 2025.
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@janemc I recently went to apply for more life insurance. They wanted to know if I'd had cancer in the last 5 years. No idea how the insurance company classifies ET, but if it gives them leverage to deny coverage, I'm guessing they call it cancer.