It is very hard when patients initially are diagnosed with CLL, especially the younger patients. Many individuals feel quite fine except for their anxiety about the CLL diagnosis. We have to recognize that being diagnosed with any cancer is going to have an impact on mental/emotional quality of life, and it is important for patients to have emotional support and counseling to help them get through this.

I will often advise patients to be careful when accessing online information. There is a shocking amount of data out there that is out of date or that suggests survival rates and outcomes that do not reflect the current reality. This information can provoke anxiety, even though much of it is no longer true in the era of targeted therapies. Further, if cancer support groups are dominated by patients who have received multiple therapies or transplants, again, the experience may cause a great deal of anxiety based on information that is not very relevant to someone on active surveillance. It is important to counsel patients to live their lives as much as possible and to focus on how they manage stress. It seems as though the longer patients are on watch and wait, the more they become comfortable with it.

I am not certain that receiving treatment earlier, even if that were the right thing to do medically, would substantially mitigate all of the worry. CLL is not a curable disease in general, and patients who receive treatment still worry about having a relapse. Additionally, while we tend to not see much clonal evolution while a patient is on watch and wait, there is an increased likelihood of evolution toward more aggressive disease during treatment cycles. So, there is actually the potential to do harm with early treatment. Until we have a proven survival benefit, I do not think that it is a good idea to recommend early treatment.

More often than not, patients who are diagnosed with CLL are not treated immediately but rather are monitored with active surveillance, and it is true that receiving a cancer diagnosis and then being told to “do nothing” may impact patients’ distress and quality of life. But that is where education and counseling come in.

For asymptomatic patients, regardless of their genetic risks, there is no therapy to give unless this is done as part of a clinical trial. There is no evidence with any of the targeted drugs or older drugs that survival is improved by treatment earlier than is recommended. It is not known what effect earlier treatment could have, and, for an individual with a long life expectancy ahead of them, early treatment could conceivably be detrimental, leading to earlier resistance. In contrast, we know that initiating treatment only once the criteria have been met does not sacrifice any survival outcomes.

Typically, I start by telling my patients with early-stage CLL that their prognosis and the general outlook are usually quite good. In the current treatment era, results of the staging and evaluation of early CLL are more reflective of the time to treatment and are less of an indicator of the patient’s overall survival. We are at a good place right now with our current therapies for most patients with CLL, even once symptoms arise. I might explain that the medications we use are intended to help ensure that the CLL does not shorten one’s life span and that early treatment has not been shown to lengthen one’s life span.

When you tell a patient that you are not treating them for their CLL because they do not yet meet the criteria, you can have very different responses. Anxiety is one of them, and I agree that the answer to anxiety is to address it and to help the patient get through it, not to treat them early. Patient education is extremely important in the setting of active surveillance. In fact, even those with very good prognoses need a fair amount of education.

Patients can differ remarkably in terms of how they initially perceive active surveillance. There is the patient who looks at you like you have lost your mind when you tell them that you are not going to do anything about their CLL. And then there is the patient who seems relieved not to have to spend time undergoing treatment and says something like, “Oh, you mean that I don’t have to do anything else except to see you again in several months? OK, bye. I’m out of here.”

One thing that I try to stress at the beginning when I talk about watch and wait is that the good news is that, by waiting, the treatment options become so much better. I tell patients that there have been numerous new treatments that have been approved by the US Food and Drug Administration for CLL in the past 10 years. Let us say that I had a patient who, 7 years ago, did not want to do watch and wait; their options for treatment at that time would have been much more limited than they are currently. Watch and wait has given patients access to much better therapies, and my experience has been that it seems to be pretty helpful. So yes, they are waiting. But while they are waiting, the treatments are getting better.