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?

@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.

Hi @philipschuyler , I was dx'd in Apr'24 with CLL. I had not noticed any symptoms, but I had a high WBC count at my physical in Dec'23 so my GP suspected. In my case, it took 3-4 months to get a diagnosis. I started at the UHealth in Mpls, but as it was taking months, I reached out to Mayo.
As it turned out I had some barely larger lymph nodes, a slightly larger spleen (one reason for the CT scan), and CLL in my bone barrow. This combo put me at a "stage 3" so my Mayo doc started me on Zanubrutinib, no chemo. A pill I take 2x/day. No issues/reactions for me.
Everyone is different. Many ppl are fortunate enough to be on "watch & wait" for many years. Others not so fortunate may get much worse symptoms. I feel quite fortunate with where I have ended up so far.
As a very curious & pragmatic person, I want all the data I can get my hands on. I'd much rather make informed decisions about my health, versus the "Que Sera, Sera" approach to life.
For me, CLL has impacted my immunity so I mask up when I feel it could help, walk around/avoid crowds... and get sick more often. I ended up catching two bug in Italy last fall, one which put me in the hospital for 3 days. Now, I'll be sure to carry antibiotics on any trip. I also started getting IVIG infusions to help boost my immunity. Not everyone needs that.
I hope this helps!

@philipschuyler Lori has good advice. Also check out CLL Society website. Be sure you’re seeing a CLL expert hematologist.

@philipschuyler Sign up with the CLL Society https://cllsociety.org/ Lots of information; takes a while to learn your way around the site. Sign up for "Ask An Expert." A little involved--you send a doctor your medical records (or your doctor does) and you get a one-hour, free consult with an oncologist who specializes in CLL. Lots of online support groups, lots of videos on the latest research. What to do and not to do. Check it out.