I don’t know what to think about all this... When I was first diagnosed with CLL was thru my Hematologists , I decided to find a CLL Specialist also for a second opinion .. so yesterday was my fist appt with The Specialist and he told me that I don’t have CLL , ok sooo now I’m so confused! My hematologists diagnosed me with a Fish test, The specialist all he has is my records , no he is sending me for more test , Don’t no who to trust!! Since I was diagnosed Ism depressed I told my fam, my kids.. don’t sleep well , don’t eat ect ect , This is killing me!!
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Paulibiris
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It is frustrating to get conflicting opinions Pauli. There is not enough information in your post to say whether you have cll, another type of lymphoma or no lymphoma at all.
The way most people get diagnosed with cll is when they have a blood test for any reason and the white blood cell count comes back high. Cll is a cancer of our lymphocytes, a type of white blood cell, and when we have too many lymphocytyes in our blood it raises the suspicion our lymphocytes are rapidly dividing and not dying as they should, creating an excess amount of them in our blood.
The test doctors most often use to confirm a cll diagnosis is called flow cytometry. Cll cells have molecules on their surface that can identify them as cll cells. You might ask your doctor if you had flow cytometry and what it said. Or if you have online access to your records, look for the results of your flow cytometry test and post them if you want comments. We have a few members that can interpret the results.
Sometimes the results of flow cytometry are not conclusive for cll. Further testing might help show if one has cll, another type of lymphoma/leukemia, an atypical type of cll or maybe not a cancer at all.
You might consider writing down questions for your next appointment and try to get clarification. For most people their cll can be definitely diagnosed with flow cytometry, but we had a number of members where testing is inconclusive. I would ask my new doctor why it is he thinks my first doctor was wrong about it being cll, what he thinks it might be, what tests he is running and what were the results of the tests thus far, particularly flow cytometry.
Flow cytometry is done on a blood sample Pauli. If you were diagnosed with cll in December and have seen two cll doctors now, I think it likely a flow cytometry test was done on a sample of your blood at some point and perhaps just not discussed with you.
I certainly could be wrong, Flow cytometry is a routine test for cll though and it cant hurt to ask your doctor or to look at your records if you have access if you are seeking answers.
I agree with cajunjeff, pauli. In the US, flow cytometry is usually done with FISH, along with IgHV mutation status. The results of those tests are what the docs use to decide your diagnosis. The CLL specialist may think you have SLL , b-pll, or a different lymphoma. All related, but the markers are what they use to get a "specific" diagnosis. I can also imagine a scenario where someone can be mixed, or have features of more than one, which would confuse the issue. The bottom line is, you appear to have some kind of B-cell abnormality and there are treatment options if needed.
To give a couple of parallel disease examples, 1)my FIL got a bulls-eye type rash on his (bald) scalp after a cold. It spread all over his body within a few months. His diagnosis has changed 3-4 times as experts try to decide exactly what is going on. The bottom line here is that he appears to have developed some kind of post-viral syndrome.... and regardless of the exact diagnosis, his treatment has been the same. 2) I have had both shingles(herpes zoster) on my left torso, and cold sores (herpes simplex) on my lips. They are both herpesviruses. I got something on my left upper back, not painful (like shingles was) but itchy. My doc thought it was a mixed simplex/zoster infection, she said that's what the lesions looked liked. No pain but itchy. I didn't stress about the exact diagnosis.
Medicine is an art as well as a science, and patients don't always follow the textbook examples.
Please try not to stress....this likely isn't something like lung or breast or colorectal cancer that is a quickly moving potential killer. We have the "C word" in our diagnosis, but it's not like other C's.
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Bmb results confused 
Help! Newly diagnosed 31yr old very confused.
CLL confused
FCR soon/confused
Feeling confused about starting treatment 😱
