Rollercoaster of emotions
Imagine being told you have cancer. You’re reeling from the diagnosis, and anxious to partner with your doctor to develop a plan of action.
Then, imagine being told to just "watch and wait."
This is what many chronic lymphocytic leukemia (CLL) patients experience, and it’s only the first of many twists and turns they may face as they battle this chronic form of blood cancer.
A slow-growing form of leukemia, CLL isn’t always treated until it becomes symptomatic – which can sometimes take several years from the time of diagnosis. And once treatment does begin, it’s usually the first in a series of long and complex cycles as the disease goes from remission to relapse.
While all life-altering diseases can take a toll on mental health, the emotional experience of CLL can be challenging in unexpected ways. We asked Neha Godiwala Goyal, Ph.D., a postdoctoral research fellow at Wake Forest Baptist Medical Center, who has studied the psychological trajectories of patients with relapsed/refractory CLL, how to better navigate the ups and downs of the disease.
What makes CLL particularly challenging from a psychological perspective?
Neha Godiwala Goyal, Ph.D.: CLL is different from other cancers in that most patients who are diagnosed do not need treatment immediately. Some patients will be on a 'watch and wait' path for several years, others may never have treatment, while others are treated immediately after diagnosis due to having increased symptoms. However, once a patient starts treatment it is likely they will be on and off treatment over the course of many years.
CLL is a chronic disease that a patient will likely live with and have to cope with for the rest of their life. This can make it potentially challenging for patients, as patients must deal with the diagnosis and treatment for a long period of time, where there are many unknowns.
What toll does the “watch and wait” period take on a patient?
Goyal: While many patients will do well without receiving active treatment, others may find it to be more distressing. In particular, for some patients, it can be hard to understand why 'nothing' is being done when there has been cancer detected in their body. This can make some individuals anxious as they may worry how the cancer is affecting their bodies. It may also be hard to reconcile that one is “ill” but is expected to carry on with one’s normal life.
Patients may also experience a consistent fear of the cancer progressing, which means they may find themselves paying attention more closely to any physical symptoms they might experience. Because patients can be in the “watch and wait” period for years, living with this prolonged uncertainty can potentially take a toll on a patient’s quality of life and make it hard to continue living “normally.”