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prior symptom - polycythemia vera

tbado
Posts: 11
Joined: May 2008

Prior to being diagnosed with RCC by the rupture of a primary tumor, I was
diagnosed with idiopathic polycythemia vera. It turns out that my primary
tumor was making an erythropoietin loke substance that functioned in the same
manner but was not specific enough to be picked up on the lab assay. I was wondering
if anyone else had a similar experience.

smurfin57
Posts: 22
Joined: Sep 2009

Yes it's not just you. I had an episode about four years ago with what they thought was Polycythemia. The doctors were unable to pinpoint the cause. Now I have recently been diagnosed with Kidney cancer. I also had numerous small symptoms that resolved themselves. I just thought I was getting old!!

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi! Not sure if you're still on the forum, but I have some real concerns about polycythemia and whether it will impact on my upcoming surgery (and after). I am newly diagnosed with a 5.5cm RCC on my left kidney, and am scheduled for radical nephrectomy in 2 weeks time. I'm wondering now if my high red cell count is due to the tumour- I've had untreated Polyc for over 2yrs(damn doctor!), and have heard that the most effective treatment is phlebotomy, which is now out of the question. I'm so worried that with the increased risk of blood clots etc that the operation may be more dangerous. Any info would be really appreciated!!
Yvonne

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