Dr. Danielle Brander provides her expert advice for newly diagnosed chronic lymphocytic leukemia (CLL) patients and outlines key steps for staying informed and engaged in care decisions. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.
Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.
For patients newly diagnosed with CLL, I think there are a couple important first steps to take. First is recognizing that this is a long journey, meaning from the time of diagnosis potentially being monitored until requiring therapy, or maybe being a patient that doesn’t ever need treatment, or has to switch amongst different treatment options either due to response or due to a problem tolerating the therapy, is just recognizing that in this long journey it’s also going to be a long time for self-education of yourself, your family, and your caregivers.
And recognizing that at the time of your first appointment with your oncologist, that it’s okay to feel overwhelmed with the information, and just recognize to take the education that you can in pieces, and it’s okay to ask the same questions each time because your understanding is going to evolve with time. There’s only so much information any of us can understand when we’re first hit especially with news and told of leukemia, or even just in trying to understand why patients don’t necessarily need treatment.
It’s somewhat intuitive to all of us to feel like if you find something wrong, especially a leukemia, to want to treat it right away. But I tell patients an important first step is understanding that it is doing something by not doing something if you don’t need to. There’s been a lot of studies over the years showing no benefit to early treatment, and also some side effects, and also that some patients might never require therapy.
So that’s an important first step is understanding that move and that it’s okay to ask the same questions each time. Remind me what we’re looking for if I need therapy, etc.
Also, again, in today’s world, there are a lot of online resources. But one important recognition I would say, is finding the right one. Your treatment team can help guide that. There are also CLL communities that can help guide it to resources that are kept up to date. For example, as I mentioned, there are a lot of new drugs for treatment of CLL, so if you stumble upon research even from three, four, five years ago, that might not adequately reflect out patients do today and all the options that patients have today.
At the time of the first visit, it’s always good to go with a couple of questions in terms of the CLL, particularly if you’re meeting the oncologist for the first time if the testing to diagnose was done by someone other than your oncologist.
You might have had time to think about the questions, but if you’re going and hearing about the diagnosis for the first time, ask for a short follow-up to come back with questions. Because as you go home and process and talk with your family, other questions may come up.
The other important thing I tell patients as a first step is when you’re making the list of questions, try to do it ahead of time, and try to bring someone to be your ears for the appointment, and to take notes, because it’s very easy in the moment to forget everything that’s being said or what questions you might want to ask.
But also prioritize your questions, because what might seem like a short, easy, first question might be a longer discussion, might lead to other questions, and you wanna make sure you prioritize since time is limited, and understanding too much information at once is limited, that you know when you go in what your most important first questions would be.
And then lastly I would say if you’re talking with your team, it’s okay to ask if you want more information or even to understand about research opportunities. If there’s an either blood cancer expert or CLL or lymphoma expert clinic nearby where you might be able to go and get additional information, particularly if you’re thinking about treatment or trial options for you, that doesn’t mean that when you’re seeking out some of those centers that it’s changing who your core care team would be. Those visits can just sometimes be an extra step to help you understand either around the time of diagnosis or just hear in a different way in terms of treatment and trial options.