Anyone have chronic lymphocytic leukemia (CLL)?

@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.

@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?

@loribmt
Wow, you are a stronger person than I am. I find it difficult to even look for an oncologist, much less set up an appointment, when I'm feeling fine. I know I should do it, but I feel like whenever I do, it will be the beginning of the end (tests, treatments, remissions, returns, different treatments, etc.) I watched my wife go through it for ten years before passing away (breast cancer) and I guess I want to put off the whole process for as long as possible.
@philipschuyler

@philipschuyler I can understand your fear of the bone marrow biopsy as often people recoil at the idea and say it is very painful, but I believe the pain part may have been removed from the process these days. Husband says they gave him a local injection to numb him up, then took their samples via needle. It was not painful for him, they stuck a bandaid over the spot and he played a music gig that night .

Regarding tests just revealing the need for more tests, that is just part of the troubleshooting protocol. You want the most accurate picture of what all those tiny little cells are doing or not doing, and each test will focus more deeply on the suspects. The waiting for results drives me crazy too. Regarding trying to ignore things until you get symptoms- that is a personal choice but if I were you, I would get the tests the doctor recommends if only to get a baseline idea of the situation. According to our doctor, over the years, they have learned a lot about when to treat CLL and when to hold off. I think these tests will help in forming an opinion on whether to treat or hold off. Also the medical system has been overwhelmed since the pandemic: they’re not going to recommend tests you don’t need. You can do this!

Hi @philipschuyler It’s understandable to feel like you want to drag your feet on pursuing this diagnosis you’ve been handed. Especially after being with your wife dealing with her cancer. journey. Honestly, it’s your prerogative on what your next steps will be. I think you’ll know when it’s time to make that appointment. ☺️

@ksalvia
Thank you for the feedback.
I know intellectually that what you're saying is correct, but I've had such horrible experiences with cancer doctors (my wife went through ten years of ambiguity and apprehension before dying of breast cancer) that I really don't want to see another one until I know that I have to because I start to get symptoms of CLL. I may change my mind and get a new oncologist sooner because I know that I'm on the wrong side of this argument, but I feel like restarting tests is the point at which I'll stop living and start dying, and I'd like to delay the initiation of that process as long as possible.
Thanks again for your feedback.
@philipschuyler

@ksalia
Thank you very much for your feedback and your support.