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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (427)Comment receiving replies
I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩
I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!
Thank you again for your candid conversation!
Replies to "I tried to get my gp to order it, but he said it’s outside his scope..."
@momoffivetoo
I think the candid conversations here are very helpful. I too am scared, of the effects of the disease, of the meds, how this disease progresses. And you are right, other cancers develop faster.
I'm having my blood checked tomorrow to see what the platelet levels are. Question for those who have been dealing with this for a while, is it normal to be seen by the P.A. for follow ups?
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First, Im sorry for your loss. Second, thank God for your husband.
Now, and I will not pursue this with you again but, it takes NO expertise to order a blood draw and request you be tested for the JAK 2. It’s an ordinary blood draw. The result is either positive or negative and then a referral to specialist.
Maybe it’s the health care system you’re in but otherwise, what I’ve described is all it takes. In fact, I think if you contact an independent lab like Quest, you may be able to order it yourself.
You have pain and you’re scared and if you have PV there’s no reason to wait any longer than you have to begin treatment.
I’m sorry but I’ve heard too many stories that would have ended differently if reasonable action had been taken earlier.
If I have overstepped, I apologize.