Decision Point - so4getful

Decision Point Associated with Hemangioendothelioma. Posted on April 8, 2012 View this journey (10 Experiences)

EHE is a slow moving cancer. Even though I am symptomatic, other than the hemoptysis I'm not presenting as "sickly," and this episode of hemoptysis has subsided for now. The decision of when to start "treatment" (read, chemo) is up to me. Doctor in DFCI didn't seem to push in either direction, and I figured if I was in great immediate danger, he would have pushed for the treatment option right away. Instead, we came up with a plan: CT scans every 3 months; bloodwork to check for anemia every month (to monitor how bad the hemoptysis is), and reevaluate after each. At some point, he expects I will require treatment. Coincidentally, my renal cell carcinoma slides are confirmed that they are NOT epithelioid hemangioendothelioma; and doctor thinks we can really only trace this back as far as the hemorrhagic symptoms beginnings; so I've had it maybe 5 years instead of 10 to 12 years. But this does also mean that I've had 2 distinct cancers. I should play the lotto more often!

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