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ET, Polycythemia, Jax2: Is this a blood cancer?
Blood Cancers & Disorders | Last Active: Jan 10 8:57am | Replies (26)Comment receiving replies
My comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.
I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.
Replies to "My comment is an opinion based on conversations I had with hematologists whose credentials I respect..."
"We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts."
Very true.
Source: Three year NASA research fellowship.
Thank you. I was diagnosed over 20 years ago with ET, 1800+ platelet count found accidentally. While I was sent to and still see a hemotolgy oncologist, no one has ever said I had a blood cancer. Treated almost consistantly with Anagrelide (Agrylin when first offered, newish on the market) that works...5 mg twice a day. For years I only took one on the weekends....COVID messed up dosage so. Like alcoholism, I don't causally share my medical anomalies. Agree to disagree!
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I am so sorry you have dealt with breast cancer. Many of us have had acute cancers and understand that chronic blood cancers are very different.
What you choose to believe about ET and how to treat it are up to you, of course. But those who reject the "cancer" label often confuse and make anxieties worse for newly diagnosed patients or for those whose ET becomes brittle and stops responding to chemo.
The Mayo Clinic is not the place I expected to have to wade through denials of current medical thinking, or to get unsubstantiated info on "natural" treatments rife on some other threads. I can get that from googling stuff. So I am dismayed by people here who are pushing non-mainstream views and treatment.
None of that is helpful to my trying to deal with my own symptoms and treatments and runs counter to the aims of a support group.