Being Tested for ET

I have been going through blood tests and doctor visits, in an effort to find out why my WBC was elevated, then the last blood tests showed my WBC had dropped down to almost high normal, but my platelets were slighting elevated, and both WBC and platelets have been going up and down during the last 3 months. The hematologist tested my DNA for the leukemia markers, but it came out negative. So today she explained the Essential Thrombocytosis, along with some other disorders than can be related. More blood taken today so she can test for the JAK 2 mutation, and if that comes out negative she wants to do a bone marrow aspiration/biopsy. I went in today to go over my labs with the idea that everything would be normal and it was just a formality, and got presented with this new possibility. My understanding is that if I do have ET, it could end up developing into Chronic Myelogenous Leukemia down the road.

All that being said, my main thoughts here are if the hematologist is putting me through all of this testing, she must strongly suspect that ET is what I have. I actually mentioned that to her, and she didn't exactly give me a straight answer but indicated that she needs to find out a definite diagnosis so she is doing the tests and possible bone marrow testing, which I really hope I don't have to go through. Either way, I lose...either the JAK 2 test is positive - or I end up having to have the bone marrow biopsy. I can't believe she would put me through all this if she wasn't pretty sure of finding it.

Any idea on how long this JAK 2 testing will take before I get the results?

I'm just kinda upset here...going from believing everything is just fine and being able to go on an Alaskan cruise next week, to finding out that, no...something still isn't right and now I will have this in the back of my mind while trying to celebrate my 10th anniversary and having some fun.

Just wanted to vent...this is a scary proposition and I guess I need some people I can identify with.

Thanks.

The waiting is the hardest.  If you test postitive for the JAK 2, I assume you won't need to do the bone marrow test.  I did have to go through the bone marrow test and once I found out what was wrong with me (after 4 different doctors blew me off) I was relieved.  In the JAK 2 test, positive results support a diagnosis of Polycythemia vera (PV), essential thrombocythemia (ET), idiopathic myelofibrosis (IMF) or atypical or unclassified MPD.

Depending on the lab, turn around time could be 10 days...your doctor should be able to let you know.  Also, it is not common to have it turn into leukemia...even though it could happen.  It depends on other circumstances, too.

It is good that your doctor is being cautious about telling you that you do have it when they don't have all the tests back.  I am still impressed that my doctor actually suspected ET ....however, she asked me to do some tests before she told me her suspicions, which I am thanful for.  I had one doctor more than ten years prior, who told me she was sure I had leukemia.  At that time, I didn't know anyone with cancer or who had been through cancer and here was a doctor trying to label me with it.  I walked around in a fog for days.  Thank goodness she was wrong, but she should have never have told me that unless she was absolutely sure.  She apparently didn't know about ET since she never teste me for it.

I am sorry that you have to go through this.  Even though it is rare, there are many of us on-line who know what you are going through as you wait for the results.  Hang in there.

On 6/26/2009 MerryJoy wrote:

The waiting is the hardest.  If you test postitive for the JAK 2, I assume you won't need to do the bone marrow test.  I did have to go through the bone marrow test and once I found out what was wrong with me (after 4 different doctors blew me off) I was relieved.  In the JAK 2 test, positive results support a diagnosis of Polycythemia vera (PV), essential thrombocythemia (ET), idiopathic myelofibrosis (IMF) or atypical or unclassified MPD.

Depending on the lab, turn around time could be 10 days...your doctor should be able to let you know.  Also, it is not common to have it turn into leukemia...even though it could happen.  It depends on other circumstances, too.

It is good that your doctor is being cautious about telling you that you do have it when they don't have all the tests back.  I am still impressed that my doctor actually suspected ET ....however, she asked me to do some tests before she told me her suspicions, which I am thanful for.  I had one doctor more than ten years prior, who told me she was sure I had leukemia.  At that time, I didn't know anyone with cancer or who had been through cancer and here was a doctor trying to label me with it.  I walked around in a fog for days.  Thank goodness she was wrong, but she should have never have told me that unless she was absolutely sure.  She apparently didn't know about ET since she never teste me for it.

I am sorry that you have to go through this.  Even though it is rare, there are many of us on-line who know what you are going through as you wait for the results.  Hang in there.

Thanks for responding MerryJoy. I just now checked back and saw it. Sorry for what you have been through...but glad you found out it wasn't leukemia! My JAK2 test came back negative, yet the doctor said she is diagnosing me with ET, and will wait to see what my platelets do in the next 2 months before she decides on a bone marrow aspiration/biopsy. I have my doubts and wonder why she is so quick to diagnose me with ET when my platelets have only gone as high as 465...as well as gone up and down, instead of soaring like all the other cases I have read about on this message board, as well as another one. Also, most medical info on ET that I've found online says that the major guideline for diagnosing ET is a platelet count of AT LEAST 600,000. My count has not even come close to that. However, with my WBC being elevated (highest being just over 14), perhaps she has other reasons for the diagnosis...or other things in my blood tests may lead her to the diagnosis in combination with the slightly elevated platelets. I know...I should be talking with her about these doubts and my reasoning, but I won't be seeing her again until Sept., and I do want to see the results of the two CBC tests I will be having done this month and next month before I ask more questions and express my doubts to her. She is the expert, after all, but still...I feel like I don't deserve this ET diagnosis. I guess that is all. I'm feeling slightly depressed lately after recently turning 55...didn't really bother me, but thinking about how young I used to look, and how I didn't appreciate youth when I had it has thrown me for a loop. I know I'm not really old...but I sag, and have wrinkles, and age spots...and I look at the young and firm women in my family and I feel old. Yes, I would like some cheese with that whine...LOL.