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Sue G
@suzeebee227

Posts: 10
Joined: Jan 20, 2018

Is Idiopathic Erythrocytosis (Polycythemia) cancer?

Posted by @suzeebee227, Mon, Mar 5 1:41pm

I have had this red cell proliferation for more than 3 years. After 2 years, of doctors managing it with phlebotomies and meds, it appears there's no answers as to why & where it's coming from after much testing and fruitless searching. Doctors have told me it's Idiopathic erythrocytosis, not PV. I'm wondering why there is no information out there on whether it's cancer or not. There seems to be some worldwide disagreement on this. I'm quite frustrated at not being able to find out more. Can someone tell me if it is cancer or not and if there are hematologists that have more knowledge about this disorder so that I may get some answers? I still have rising hematocrit, (now 49%) so I'm concerned about blood clots, etc.

REPLY

Hello @suzeebee227,

I was unfamiliar with idopathic erythrocytosis. Mayo Clinic does see patients with this diagnosis and does perform a more sophisticated evaluation. From a Mayo Clinic Hematologist, "Assuming standard work-up has been exhausted, what it means is elevated hemoglobin of unknown cause.There are many potential causes including hereditary abnormalities of red cells or hemoglobin."

While this may not be the most thorough definition you were hoping for, it is nearly impossible to diagnose without proper evaluation. Should you seek a second opinion from Mayo Clinic, click on this link, mayocl.in/1mtmR63.

@suzeebee227, if you don't mind sharing, how are you feeling with this diagnosis?

@JustinMcClanahan

Hello @suzeebee227,

I was unfamiliar with idopathic erythrocytosis. Mayo Clinic does see patients with this diagnosis and does perform a more sophisticated evaluation. From a Mayo Clinic Hematologist, "Assuming standard work-up has been exhausted, what it means is elevated hemoglobin of unknown cause.There are many potential causes including hereditary abnormalities of red cells or hemoglobin."

While this may not be the most thorough definition you were hoping for, it is nearly impossible to diagnose without proper evaluation. Should you seek a second opinion from Mayo Clinic, click on this link, mayocl.in/1mtmR63.

@suzeebee227, if you don't mind sharing, how are you feeling with this diagnosis?

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Hi Justin,
I have been thinking that maybe I should get another opinion at Mayo because the hematologists I have been seeing in my area seem to have no answers. I was treated very rudely & felt like I was being dismissed after my last appointment. I did not want to go back to that doctor or have any part of the medical system I had been in for more than 2 years. I don't have high hemoglobin numbers but just the hematocrit. I had so many phlebotomies that I was borderline anemic. Now I'm on iron pills but the problem of the red cells is still there & the numbers are going up slowly. I go to my primary Doctor for blood panels. My main symptoms are constant & many times extreme itching, upper body and arms, neck, back, scalp and lately, lower legs, torso gets extremely hot with sticky skin under breast area. Worse at night and not sure if the idiopathic neuropathy in feet is connected to this. Also have painful wrists and hands from longtime carpal tunnel syndrome. I had a bone marrow biopsy in March/16 to check for Polycythemia Vera but came back Negative for Jak 2 mutation. I'm really discouraged some days. I will have blood hematocrit & iron checked again in April at my primary Dr's office. Thanks for any help you can provide.

@suzeebee227

Hi Justin,
I have been thinking that maybe I should get another opinion at Mayo because the hematologists I have been seeing in my area seem to have no answers. I was treated very rudely & felt like I was being dismissed after my last appointment. I did not want to go back to that doctor or have any part of the medical system I had been in for more than 2 years. I don't have high hemoglobin numbers but just the hematocrit. I had so many phlebotomies that I was borderline anemic. Now I'm on iron pills but the problem of the red cells is still there & the numbers are going up slowly. I go to my primary Doctor for blood panels. My main symptoms are constant & many times extreme itching, upper body and arms, neck, back, scalp and lately, lower legs, torso gets extremely hot with sticky skin under breast area. Worse at night and not sure if the idiopathic neuropathy in feet is connected to this. Also have painful wrists and hands from longtime carpal tunnel syndrome. I had a bone marrow biopsy in March/16 to check for Polycythemia Vera but came back Negative for Jak 2 mutation. I'm really discouraged some days. I will have blood hematocrit & iron checked again in April at my primary Dr's office. Thanks for any help you can provide.

Jump to this post

I too have had many of these exact symptoms. Dr. Said erythrocytosis. I'm to have blood test checked right now every 3 weeks. They took one unit of blood and it helped with the itching about 75%. I am currently feeling the itching coming back. The dr. Is have me do a ct scan on upper stomache and lumbar of my back because of pain I've experienced for many years. What does erythrocytosis mean ? Is this something that will be curable? Does it turn into something worse? I just want more understanding.

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