Sarah Cannon - April 22, 2021

Research has shown that for patients with chronic lymphocytic leukemia (CLL), whose disease is not acting aggressively, immediate treatment is not always the best approach. This may seem confusing or concerning for patients and their families who want to begin treatment as quickly as possible. Experts from the Sarah Cannon Transplant and Cellular Therapy Network answer common questions regarding this treatment approach.

“Watchful waiting is a way to decrease the overall exposure a patient has to treatments," says Michael Tees, MD, a hematologist and lymphoma specialist at the Colorado Blood Cancer Institute. “We have identified that this strategy provides a benefit to patients by decreasing the amount of therapy without affecting outcomes.”

Through advancements in cancer research, researchers have found that targeted treatments combined with watchful waiting can improve outcomes for patients.

Ian Flinn, MD, PhD, director of lymphoma research at Sarah Cannon Research Institute, explains that after the first consultation, he sees patients with CLL every three months for the first year and every six months after that. If symptoms begin appearing or anything changes, he recommends that the patient comes in more frequently, and discusses treatment options. The average patient may use the watchful waiting approach anywhere from one to five years.

“Studies show that early treatment for CLL is effective, but not any more so if you begin treatment before symptoms start appearing,” says Dr. Flinn. “If we wait until a patient has disease symptoms and then treat the patient at that time, the overall success is just as high and a patient may have gone for years without the side effects of treatment.”

Temporarily waiting for treatment may still make patients anxious.

“In many regards, watchful waiting is an excellent strategy, but of course there are concerns by patients about sitting on a disease,” says Dr. Tees. “In order to combat their anxiety, we tailor our approach to each patient so he or she understands the rationale.”

“It’s a difficult conversation to have, because anyone who researches cancer learns that early treatments usually lead to better outcomes,” says Dr. Flinn. “But this is not the case for all cancers, especially certain types of blood cancer. We walk through the options with our patients and provide them with the latest data related to their disease. Upon review of options, it's rare for a patient to disagree with the watchful waiting treatment approach.”

Blood cancer specialists assess each patient to develop a treatment plan and timeline specific to their cancer and health.

“Through proper observation, CLL can be managed for a long time without treatment," says Dr. Tees. “Some patients may have a more active disease, but in that case, we identify and provide treatment options early, usually bypassing watchful waiting altogether. The best thing you can do if you have CLL is to see a blood cancer specialist and design an individualized treatment plan together.”

It is important to keep in mind that watchful waiting can be part of the middle of the treatment process, the beginning, or the end, depending on the specific patient. “I often use the term ‘active surveillance’ to describe watchful waiting,” says Dr. Tees. “Removing the fear associated with waiting is a part of the patient understanding his or her diagnosis. CLL is different than most other malignancies, and taking the time to explain the disease as well as the current and future treatment options can provide years of comfort for the patient knowing that we are ready if and when treatment is necessary.”

Talk with your blood cancer specialist to determine what treatment plan is best for you.