A diagnosis of chronic lymphocytic leukemia (CLL) does not always mean starting treatment right away. Many people are placed on active surveillance, sometimes called watch and wait, where blood counts and symptoms are monitored closely but no chemotherapy or targeted therapy begins unless the disease progresses. This approach is medically sound and can mean years without the burden of treatment side effects, but it creates its own psychological terrain: living with a confirmed cancer diagnosis while being told there is nothing to actively do about it yet. Research is beginning to show that this waiting period carries measurable, sustained distress, and that distress is tied not just to the diagnosis itself but to what a person learns about their own biological risk.
What the Research Shows
A recent study of 76 adults newly diagnosed with CLL or a closely related condition, all managed with active surveillance, tracked perceived stress, anxiety, and depression alongside detailed blood immune markers over two years. The researchers found that people reporting higher stress and anxiety showed measurable shifts in their monocyte subsets, a type of white blood cell involved in immune regulation: specifically lower levels of one subset and higher levels of another, with the association strongest around the one-year mark. This is one of the first studies to connect psychological distress during CLL surveillance directly to changes in the immune system, suggesting that the stress of watching and waiting is not only a mental experience but one with a measurable biological footprint.
Healthy Ways to Cope
- Name the specific uncertainty you're carrying Watch and wait asks you to hold two things at once: you have cancer, and nothing is being actively treated. Naming that tension out loud, to yourself or someone else, can make it feel less like a vague unease and more like a specific, understandable thing to cope with.
- Ask about your risk markers, but set your own pace You are allowed to ask your hematologist about genetic or mutational risk-status testing, and you are equally allowed to decide how much detail you want right now. There is no requirement to learn everything at once.
- Build a rhythm around your monitoring visits Rather than letting anxiety spike unpredictably, try anchoring a small routine to your follow-up appointments, such as planning something grounding or enjoyable immediately afterward, regardless of the results.
- Treat your stress response as information, not failure Research increasingly shows that psychological distress during cancer surveillance shows up in measurable body systems. Feeling anxious during watch and wait is a documented, physiological response, not a sign that you are handling things poorly.
- Seek support designed for uncertainty, not just for illness Many support resources are built around active treatment. If those don't fit your situation, look for or ask about groups and counselors who specifically work with people in long-term surveillance or indolent disease.
A Closer Look: Who Struggles Most
A study following newly diagnosed CLL patients enrolled in a national clinical trial network compared those classified as higher biological risk, based on a specific genetic mutation status, against those classified as lower risk. The higher-risk group reported significantly worse anxiety, depression, intrusive thoughts, perceived risk of progression, and day-to-day emotional functioning than the lower-risk group, and this gap was not limited to the time around diagnosis. It persisted at nearly every assessment point tracked across a year and a half of follow-up. This suggests that for some patients, distress during watch and wait is not a short adjustment period that fades with time, but a sustained experience closely tied to what they know about their own disease biology.
If You're Supporting Someone with CLL
Because watch and wait sounds reassuring on its surface, it's easy for friends and family to assume that no treatment means nothing to worry about. For many patients, the opposite is true: living with an untreated cancer and regular monitoring can feel like carrying uncertainty indefinitely, with no clear endpoint to work toward. If someone you care about has CLL and is in surveillance, avoid framing their situation as the good kind of cancer or something to simply relax about. Instead, ask how the waiting itself feels, and whether upcoming blood work or appointments are weighing on them. Simply acknowledging the ongoing nature of their experience can mean more than reassurance about long-term outlook.
Quick Reminders
- Watching and waiting is still living with cancer You don't need to minimize your diagnosis just because treatment hasn't started. Your concerns are valid at every stage.
- Your distress can show up in your body, not just your mood Research links psychological stress during CLL surveillance to measurable changes in immune cells. Your reaction is physiological, not just emotional.
- Knowing your risk status can bring its own weight Learning that you fall into a higher-risk category is linked to sustained anxiety and low mood in research. That reaction is common, not a sign you're coping poorly.
- There is no fixed timeline for adjusting Some people find the distress of watch and wait persists well beyond the first few months. That doesn't mean something is wrong with how you're coping.
- You can ask for mental health support without a treatment plan You don't need to be in active treatment to deserve psychological support. Ask your care team what's available for people in surveillance.