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Profile picture for ksalvia @ksalvia

@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!

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Replies to "@philipschuyler I can understand your fear of the bone marrow biopsy as often people recoil at..."

@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