I originally wrote this as an answer to another question, but find that perhaps I should just ask it as a separate topic. Everyone here knows that a CLL diagnosis is shocking, especially since it is so different than a typical cancer. We get to live with it until the last possible moment where we can then expect treatment. A lot is known and published about treatment as it is the eventual key to “curing” this disease.
But what do we do while we are waiting for treatment? With all the data they have collected on most of us, something must be known. My oncologist must have an idea of how long I will likely wait (in general) before treatment. We all wait, whether it be 2 months or 20 years. Its the time after treatment where there are the most variables - not before.
I am totally confused about time to first treatment (TTFT) in general. There must be many factors that determine this - but I’ve yet to see anything “current” that is written up about it. We are given a diagnosis and many (if not most) of us are told to wait. We have blood tests, lymphocyte doubling time, flow cytometry, antigen expression, genetic analysis, age - all known. I was told that I may never need treatment - but I might. No real time frame seems forthcoming - not even a guess. I’m asking for one of the more basic aspects of the disease, not that someone look into a crystal ball and tell me my future.
All the articles I read are about treatment. I have yet in the 2 months since my diagnosis heard of how long is a “ball park” guess that I must have to wait. Is this just not studied or put into any digestible form? If I am going to “watch and worry” then I really would like to know how long that could be. Even with new advances in treatment, that time must be somewhat unchanged. Does anyone have clarity on this? Or are all the studies about treatment and nothing about time to treatment?
Most graphs say that (since I am IgVH mutated), there is a 50% chance that I may not need treatment for 25 years. But there is about a 15% chance that I will need treatment in 5 years. Clearly there must be some way of to guess at this more precisely based on the many prognostic factors and can be used as a rule of thumb to expect when treatment will be likely?
This has got to be a question that many of us have or have had at some point after diagnosis. Any ideas? Thanks.