← Return to Anyone have chronic lymphocytic leukemia (CLL)?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @philipschuyler. Chronic lymphocytic leukemia is generally a very slowly developing form of leukemia. Frequently CLL is found randomly through bloodwork with routine physicals because of the lack of symptoms in the initial stages. Often people can go years without any treatment until symptoms become more pronounced such as night sweats, low grade fever, fatigue, unexplained weight loss, swollen lymph nodes, changes in blood counts, etc..

It’s usually not necessary to have a bone marrow biopsy (bmbx) to diagnose CLL. Though a bmbx may be helpful confirming the diagnosis or evaluating the extent of the disease. Also, unless there’s a specific area of the body your oncologist is concerned about checking, such as a swollen lymph node, a CT isn’t commonly used. As fellow member @ppolockaz mentioned, a PET scan would be more commonly used than a CT.

You asked what would happen if you did nothing at all. That is your prerogative as a patient. I’m not sure it’s warranted to find a new oncologist at this time. But it is important that you’re comfortable with your doctor and feel they can relate to your concerns regarding the BMBX and CT.
Much of the treatment going forward depends on what your blood work shows and the potential for your CLL to progress. Your doctor may use the BMBX to help stage your CLL.
If this were me, my next step would be to contact the doctor for a consultation and discuss the concerns. Ask why you need the tests. Ask if staging has been done for your disease or if the BMBX would be helpful.

Here’s a link to the Mayo informational article on CLL: https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

Do you have any swollen lymph nodes that your doctor physically felt? Have you experienced any symptoms related to CLL that you’re aware of?

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Replies to "Hi @philipschuyler. Chronic lymphocytic leukemia is generally a very slowly developing form of leukemia. Frequently CLL..."

@loribmt
Thank you for all the information. I don't have swollen lymph nodes, night sweats, or any of the other symptoms, which is why I'm leaning toward doing nothing. I thought I'd wait until I do develop a symptom or two before looking for a new oncologist. (My last one had a terrible bedside manner and I could never get any straight, informative answers from him. Due to his unwillingness to be open with me, I'm not even absolutely sure what kind of cancer I have. But I'm so tired of tests and then worrying for weeks about the results (esp when they are so frequently inconclusive) that my plan is to not go to another oncologist until I have symptoms, so that I KNOW something is wrong. If you think this is crazy or stupid, please tell me. If you think this can be considered a not-crazy approach, please let me know that too.
Thanks again for all the info.
@philipschuyler