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@philipschuyler My husband has atypical CLL - his labs were different from typical CLL (for one thing, his WBC count was low, as opposed to elevated), so I m not sure what I have to say is actually applicable, but my husband had no symptoms either, except he got pneumonia (which turned out to be a symptom) and blood tests at that time waved red flags which continued through more extensive blood tests. For us the bone marrow biopsy identified a chromosomal abnormality indicating CLL, so I don’t think the procedure is overkill. Many people get a “wait and see” diagnosis and stay that way for years. Others begin to display the symptoms described by others in this thread, but you can’t address those symptoms accurately without jumping through the testing hoops so the provider can choose the appropriate therapy, which could be as simple as a couple pills a day. I would trust that if your oncologist is not recommending “wait and see” he or she has staged your situation so you might want to ask them to explain the staging system. You might want to see a hematologist/oncologist rather than a regular oncologist.

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Replies to "@philipschuyler My husband has atypical CLL - his labs were different from typical CLL (for one..."

@ksalvia
Thank you for the information. I could do a CT scan or an MRI if necessary, but for some reason the bone marrow biopsy scares me to death. I know it's childish to stop going to doctors bc you're afraid of both the tests and what they may end up showing, but I'm still leaning toward "wait-and-see" unless I start to get symptoms. (I'm a depressive, so the waiting periods from test to results are ruining my quality of life - esp when the results are often inclusive and just seem to serve as a springboard for more tests.) Do you think that doing nothing at all until I get symptoms, if I get them, is a viable choice?