What to Know After a CLL Diagnosis

After a cancer diagnosis, our first thoughts are often what's next? When will I start treatment and how will my doctor support me? We spoke with specialists to help break down their approach after diagnosis, and it starts with understanding who actually needs treatment and when. Not everyone with CLL needs treatment. So these are rough estimates. But at the time that a patient’s diagnosed with CLL, approximately one third of patients will need treatment right away. Another third of patients never need treatment for their CLL. It can be actively observed and monitored with your doctor through labs or physical exam, and then another third might not need treatment right away, but will be monitored and will need treatment at some point during their disease course. When doctors are actively monitoring your disease but not giving you treatment, that is called watch and wait. Watching wait is when a patient meets the diagnostic criteria for chronic lymphocytic leukemia, but does not need treatment because the patient has either RAI state 0 or 1 disease and is asymptomatic. Such patients can often be observed for very long periods of time. The great majority of times we don't need treatment right away. Sometimes you find you detect it, but when you look back, it actually had been present for quite a while already. So in most patients you do not need treatment right away. We have beautiful therapies that work extremely well. There's no reason to leave symptoms if we have treatments available. But on the other hand, if you don't have symptoms, we have criteria to treat asymptomatic disease. But mostly what happens is if we find it, it's not giving you trouble. We will watch it. We won't even treat it. When you hear from your oncologist, you have cancer and we're not going to do anything at this time. It's kind of confusing. And so I had to wrap my brain around that, and not even with my oncologist in the moment. It was kind of just taking it in. It’s all kind of surreal in the moment. Was it difficult to accept that the best course of treatment is no treatment? I think until you kind of dive in and understand why your oncologist is making that decision. Well, yeah, it's very confusing and frustrating and even upsetting. But, what I came to learn is that the reason that when we're early on in our staging for CLL stage zero, stage one until really you have symptoms, the best course of action is no is taking no action. My quality of life is rather good. Starting on those targeted therapies, again while not chemo, they’re still drugs. Those come with side effects. And so researchers physicians have just made the decision. The best course of action is to not do treatment until CLL is impacting your life, until you start having symptoms, that's when it's time to go after CLL. If you're on, watch and wait. How do doctors determine whether you need to start treatment? There's a whole set of reasons why CLL might need treatment, and really it simplifies down to is the CLL causing a problem for the patient? Some of the basic reasons that we would start treatment is it's affecting the other blood counts like the hemoglobin your red blood cell measure can go low. It's affecting the platelets your clotting cells. If you were to get cut those can go low. In some patients the lymph nodes grow. There's not an exact size cutoff, but there's a large lymph node coming out of the neck. If there's a lymph node pressing on an organ like the liver or the kidney, in some patients, the spleen size actually grows and could cause symptoms. And in some patients, the CLL can actually cause symptoms including fatigue, drenching night sweats, and fevers. So it really is a conversation with your doctor and a thorough assessment, especially if you're in that camp of patients who doesn't need treatment. Right. Meet those criteria right away. You're monitored over time to see if there's a development of symptoms. What exactly should you look for in a doctor? And how do you know if they're the right fit to treat your CLL? There are several factors that go into the choice of who can treat your CLL. First, I think that an important factor is finding a doctor who you can trust, who understands you, and can answer your questions. The other important factor is seeing a doctor who is familiar with CLL and takes care of CLL frequently in their clinic and in the hospital, and they have experience with the disease and with the drugs that are used to treat it, and understands what kind of expected responses are and what the toxicities could be. I also think that it's quite important to go to a center that is well known for treating hematological malignancies, particularly CLL, because you're going to see experts who are familiar with the diagnosis or also working in experts in pathology and radiology, and also have clinical trials available. Is there a cure for CLL? At this time we do not have a cure for chronic lymphocytic leukemia, but with the current treatment options that are available, our patients are able to enjoy their lives while taking their medications if they require therapy. Some patients may not require a therapy, and it's usually a disease that we think that the patients live with and may die with, but not die from. HealthTree is committed to finding a cure for all blood cancers. If you want to help, join us at HealthTree.org.