We commonly hear about the physical effects of having chronic lymphocytic leukemia (CLL). But as many people with CLL know, there’s more to the experience. While treatment, doctors’ appointments and managing uncomfortable or disabling symptoms can be a big part of life with leukemia, there’s also the powerful effect that the disease and its treatment can have on a person’s emotions, and their psychological and mental well-being. These feelings can affect daily life, relationships and overall quality of life.
Due to the slow-growing nature of CLL, most people living with the disease elect to receive long-term management and monitoring, and as such are presented with unique psychological challenges in comparison to individuals with faster growing diseases that have shorter treatment courses.
Patients and families often experience significant fear of disease progression, worry about the future, stress and uncertainty related to future treatment, and major changes in lifestyle or daily activity.
Considering advances in targeted treatments and research into new therapies for chronic lymphocytic leukemia (CLL), clinical studies have evaluated survival outcomes and quality-of-life measures. Alongside medical care, addressing the emotional effects of a CLL diagnosis is an important aspect of overall well-being.
Understanding the Emotional Impact of a CLL Diagnosis
Many patients feel a sense of overwhelming emotion and fear when they receive a leukemia diagnosis. While doctors may emphasize that CLL is typically a slow-growing blood cancer, the “C” word itself naturally sparks a degree of anxiety and uncertainty in most patients.
Patients commonly experience emotional reactions such as:
- Shock after diagnosis
- Anxiety about the future
- Fear of treatment or disease progression
- Frustration about lifestyle changes
- Feelings of helplessness or loss of control
For some patients these emotions are felt immediately after diagnosis. For others, psychological stress gradually builds as patients adapt to their chronic illness.
The stress comes largely from the long-term management of the disease, as many people with CLL are managed for long periods of time, needing regular visits with their doctor and possibly additional testing.
The Stress of Uncertainty and “Watchful Waiting”
While many emotions surface at the time of a CLL diagnosis, others may surface during the time of “watchful waiting” or active surveillance. Because not all patients require immediate treatment, doctors will often recommend close monitoring of the disease (i.e. frequent blood tests and doctor visits) before starting any specific therapy.
While waiting several weeks or even months for symptoms to manifest or for biopsy results to come back may be medically necessary and the standard of care, for many it can be an agonizing time during which patients struggle to find a way to go on with daily life knowing they have cancer.
Common concerns during active monitoring may include:
- Worry about disease progression
- Fear before routine blood tests
- Constant focus on physical symptoms
- Anxiety while waiting for results
- Difficulty feeling emotionally settled
Patients and their families often experience a great deal of uncertainty during this time not knowing if or when they will need cancer treatment.
How Treatment Can Affect Mental Well-Being
Even when CLL is managed with medication, patient anxiety and stress can derive from the treatment process itself, including the frequency and rigor of the treatment and its potential adverse effects, as well as the temporary curtailment of normal lifestyle.
Some emotional challenges associated with treatment may include:
- Fatigue-related frustration
- Reduced confidence or independence
- Concerns about side effects
- Difficulty maintaining normal routines
- Financial stress related to long-term care
There is an increasing recognition of the iatrogenic effects of psychological therapy and treatment. For those already immersed in on-going therapy, sessions, assessments and medication management can become increasingly draining and stressful.
In addition to anxiety and avoidance, patients may also experience depression. When these symptoms are severe, they can affect a patient’s work, relations with others, including family and partners, and social activities.
The Connection Between Physical and Emotional Health
Depression and decreased motivation may result in part from the physical symptoms of CLL (e.g., fatigue, insomnia, infections, pain) although sometimes apparently without any obvious related cause.
While many of our patients are battling the physical effects of their cancer, others may also experience emotional symptoms due to their physical limitations.
- Loss of independence
- Reduced social interaction
- Changes in self-image
- Difficulty participating in hobbies or activities
- Feeling disconnected from normal life
Health professionals should consider the link between physical and psychological factors. By treating the whole patient and not the illness in isolation, they can deliver better care.
Recognizing the important role that mental health care plays in the treatment of patients with leukemia, many healthcare providers are now providing the necessary tools for patients and their families to deal with a range of psychological and emotional struggles.
The Impact on Relationships and Family Life
Many people find that living with a chronic illness affects their relationship with family members, partners, friends, and even caregivers. Family members, partners, friends, and caregivers of people with leukemia can experience anxiety, fear, and even emotional exhaustion as they try to take care of their loved one and manage their own responses to leukemia.
Exploring how feelings should be managed is another key aspect of care; some patients do not want to express their feelings because they would be a burden to others, while family members may be uncertain about the emotional effects living with a person who has a chronic cancer diagnosis has upon them.
Relationship challenges may involve:
- Communication difficulties
- Caregiver stress
- Changes in family responsibilities
- Emotional withdrawal or isolation
- Concerns about the future
Open communication can help prevent miscommunication and enhance the support system both during and after treatment and long-term management of a disease.
Coping Strategies for Emotional Well-Being
As patients face the realities of living with CLL, addressing issues of psychological health becomes an important part of treatment. While many patients experience significant emotional challenges in managing their illness, there are numerous healthy ways to cope with stress and improve overall emotional well-being.
Helpful coping approaches may include:
- Speaking openly with healthcare providers
- Joining leukemia support groups
- Talking with a therapist or counselor
- Practicing mindfulness or meditation
- Staying physically active within safe limits
- Maintaining social connections with friends and family
In addition to professional care and support from family and friends, many people find it helpful to join a support group and share the experience with others who have leukemia.
In addition to addressing physical symptoms of cancer and its treatment, your mental health professional can help you manage anxiety, depression, fear, and emotional overwhelm related to your illness.
The Importance of Long-Term Emotional Support
Since many individuals with chronic lymphocytic leukemia medications are treated for extended periods of time, emotional support is not a need that will go away quickly. Instead, psychological care can be required during various stages of diagnosis, treatment, surveillance, and survivorship.
Patients may benefit from ongoing support in areas such as:
- Stress management
- Anxiety reduction
- Treatment adjustment
- Lifestyle adaptation
- Emotional resilience building
As cancer care evolves, there is growing awareness of the necessity to incorporate emotional wellness strategies into programs and services for patients with cancer. Long-term support (LTS) has been examined for its potential role in supporting mental well-being and treatment adherence, communication with health care providers and overall quality of life.
Advances in Modern Leukemia Care
As new targeted therapies and chronic lymphocytic leukemia medications are introduced for the treatment of chronic lymphocytic leukemia (CLL), patients now have additional treatment options available for disease management.
New medications use targeted mechanisms that differ from older, less specific treatment approaches. Many of the new therapies take a more targeted approach to battling cancer, working to attack specific pathways that affect the progression and symptoms of the disease.
These advances are being studied to understand:
- Long-term disease management
- Personalized treatment approaches
- Reliance on traditional chemotherapy
- Convenience with oral therapies
- Treatment experiences
In recent years as medical treatments have improved, providers have focused increasingly on the patient’s mental and emotional wellbeing, in addition to their physical health. It is truly a team effort to make that possible.
Looking Ahead While Living With CLL
Some people with CLL may be able to maintain daily activities with ongoing medical care and support. However, having chronic cancer can elicit a range of unpleasant, human emotions. People with CLL and their families may feel fearful, stressed, uncertain, frustrated and concerned about the future.
Although CLL is considered a chronic illness, with appropriate medical therapy, emotional support, and healthy coping mechanisms, some people with CLL can maintain daily activities with appropriate care and support. Advances in treatment options continue to be evaluated in clinical studies for their effects on disease management.
In addition to being focused on cure and long-term survival, cancer care is now recognizing the psychological impact of cancer and aiming to support the emotional wellbeing of patients in the longer term. The treatment and follow ups for leukemia are no exception.