July 23, 2018 / All Stories

Riding the roller coaster: the emotional impact of living with CLL

Life with chronic lymphocytic leukemia is full of unknowns. How can patients find ways to take control?

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.”

Why is it important, in your opinion, for patients to be aware of their emotional state during the CLL patient journey?

Goyal: Many patients will continue to live their lives well, getting support from those around them, despite having CLL. Other patients may have difficulty coping with the changes and uncertainty that comes with being diagnosed and treated for CLL. But the ability to cope may change over time; a patient may be able to cope with “watch and wait,” but find themselves having more difficulty coping while on active treatment, and another patient may have the opposite experience.

Either way, if a patient does not get help when they are having difficulty coping and go untreated psychologically, it could lead to several negative outcomes, including impacting the person’s mood, relationships, ability to do the activities they want, and their overall quality of life. Therefore, it is both important for health care providers to regularly monitor how patients are doing psychologically, but also for patients to bring this up with their providers, so that they can get any help and resources needed in a timely fashion.

Do you have any advice for those struggling with the prospect of relapse?

Goyal: Maintaining an open, honest line of communication with your health care provider is important. You may want to try writing down your questions or concerns in advance, and even taking a trusted friend or family member with you to physician appointments so that you can be sure to get the information you want. It may be helpful to talk with your physician about why they may be recommending a certain treatment and what they will be monitoring for in terms of when to decide to start or restart treatment.

As much as possible, remain engaged in activities that create positive emotions, whether that is socializing, doing puzzles, playing golf, cooking or whatever other activity it may be. Some activities may be more difficult or even impossible to enjoy due to changes in one’s physical health; focus on the things you can do, or adapt activities so that you can keep doing them.

For example, if you enjoy cooking but can’t stand for long periods of time, it may be helpful to break the cooking into smaller time chunks rather than trying to do it all at once. These activities not only serve as a distraction, they also often can help improve mood. Seeking support and talking to trusted friends and family may also be helpful.

Having CLL is a time of heightened uncertainty and changes. It’s important to try to focus on the things that you do have control over.

In particular, if you continue to find it difficult to cope with having CLL, speak with your health care team and/or seek professional help from a mental health provider familiar with working with cancer patients. While it’s common to feel anxious or sad during the CLL patient journey, there are many people who can help and support you during this journey so that you do not have to cope alone.

Goyal is a research postdoctoral fellow at the Wake Forest School of Medicine and a licensed clinical psychologist. She received her Ph.D. in clinical psychology from the Ohio State University and completed her internship in behavioral medicine and clinical postdoctoral fellowship in palliative care and hospice at the VA Palo Alto Healthcare System. Her research interests include the longitudinal study of quality of life of cancer patients and survivors and the development and evaluation of psychological interventions to improve quality of life and decrease distress for this population. Clinically, she specializes in working with cancer patients, survivors and their caregivers to help them cope with and navigate the psychological challenges of cancer diagnosis, treatment and survivorship.

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