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Could it be Leukemia with normal bloodwork?

Blood Cancers & Disorders | Last Active: Oct 24 8:11am | Replies (8)
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@5qdeletion

Hello looking~
My husband's oncologist did Flow Cytometry for DNA / cell analysis -- it revealed leukemia. Specifically, testing revealed ZRSR2, RUNX1, TP53, ARAF, and TET2.3 mutations. All apparently acute myeloid leukemia markers.

If you have insurance to cover the cost and a doctor willing to actually perform these precise tests, you may get information that rules out leukemia. A GP may not be up for this, but a hematologist or oncologist may be interested in finding what's going on with your blood. Your normal platelets and WBC would seem not to indicate leukemia, but anything's possible.

Flow Cytometry is costly. I'm looking at provider charges of $3,200 on one Flow Cytometry test, for which insurance approved and paid $715. Tests were performed three months in a row, and I cannot tell for sure if there were different tests or the same tests three different times- the Dr. is not "very" forthcoming with detail. I don't push him to answer when he avoids answering because I want to maintain goodwill, and insurance so far has paid. If you pay out of pocket, I suspect the full cost would be charged.

I wish you well with your search, and suspect you'll need that hematologist or oncologist to solve this.

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Replies to "Hello looking~ My husband's oncologist did Flow Cytometry for DNA / cell analysis -- it revealed..."
Patty, Volunteer Mentor | @pmm | Oct 23 8:36am

@5qdeletion
You are so right about finding the right specialist. My heart hurt a bit when you said that you don’t get all your questions answered in order to maintain good will with the specialist. Holy moly I’m so sorry to hear that. That’s why we go to specialists, not only to get treatment but to understand what is tormenting our bodies. We should feel as though we are part of the treatment team, not just a passive observer.
I was a medical social worker for the last 15 years of my career and part of what I did was facilitate those difficult conversations with providers when providers are not forthcoming. I always encourage patients and their families to make a list of their questions and take it into the exam room with them when they are seen. Take good notes and check off questions as they are answered to your satisfaction. This way, the provider knows that you want to be an active participant and also as a reminder to him or her that you have every right to know this information.
One can ask questions without making a provider feel defensive. In fact, many are encouraged because of your curiosity and involvement.
I’m so glad that you spoke about this and I hope that you feel supported. Will you let us know how things are going with your husband’s treatment?

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