Anxiety and Depression

 

Managing Anxiety and Depression Alongside CLL.

Chronic lymphocytic leukemia (CLL), a type of cancer starting in the blood and bone marrow, impacts you physically, but can also affect your mental health. 

As you figure out what the diagnosis means, learn how to manage the disease, and deal with the side effects of treatment, it's not surprising it may take a toll. There are resources you can use and things you can do to be proactive about your CLL diagnosis and take concrete actions to handle any anxiety, sadness, or stress that may come with it.

What Is the Common Response After a CLL Diagnosis?

When you hear you have cancer, Donald Rosenstein, MD, director of the University of North Carolina Comprehensive Cancer Support Program and division head of general adult psychiatry, says, "It can be very jolting for most people. I think it is a natural, normal response. I don't see anything pathological about having responsive anxiety and depression to cancer in general and CLL in particular." 

A 2021 study backs Rosenstein's view. Researchers found that after the first round of treatment, the most common reaction to a CLL diagnosis included anxiety and worry. 

Brian Koffman, MD, co-founder, executive vice president, and chief medical officer of the CLL Society, says, "Anxiety has to do with the lack of certainty, not only about the prognosis, but how the disease will be managed and how the disease will manifest." People may feel like they are on a rollercoaster with CLL, so it is natural to have anxiety and depression. 

For many people with CLL, no treatment is needed when they're diagnosed, which sets up a mental conflict. "You say I have this cancer, you tell me it's incurable, and you're not going to do anything about it," Koffman says. "They're told that there is nothing you can do to slow the progress of this incurable disease," he says. People can have a hard time understanding that.

Adding to a patient's anxiety and depression, Koffman says, "About 30% of CLL patients will never need treatment and have a normal life expectancy. While in others, the disease will progress rapidly and can significantly shorten their life." He says, "It is hard to plan because you might live for another 30 years or you might live for another 3 years. This limbo fuels anxiety and depression." 

When Your Mental Health Issues With CLL Become Serious.

• Not be able to do day-to-day activities
• Sleep poorly because of your CLL diagnosis 
• Have increasingly strained relationships 
• Not have much of an appetite 
• Have a hard time focusing or concentrating on tasks

Koffman says some people with CLL may have a mental health breakdown when "they are completely disabled and immobilized by the disease and are unable to make decisions because of their overwhelming anxiety and inability to get out of the house because of the depression and their fear of infections." 

“What is important for the CLL patient to realize is that there is no need to tough out the mental struggles alone and there are options for support.”

Diane Botta, a licensed clinical social worker, says, "A patient should reach out to their doctor if they have changes in mood that last for more than a week or two. It is especially important to treat depression that happens in people with cancer, as untreated depression can lead to apathy and self-neglect, which can include missed doses of medications or chemotherapy drugs."

The Importance of Getting Support for CLL Mental Health Challenges

Some people may resist getting help for their mental health concerns and may put off talking to someone. But Koffman says, "I would reassure the patient that most people diagnosed with CLL do have anxiety and depression and they're not alone in their feelings. You cannot – by a sheer act of will – banish a disease from your brain. It's OK to ask for help." 

Rosenstein says you have choices in how to get support. "I think when patients often feel like many things are out of their control, it is important to remind people that my job is to recommend what I think will help them feel better, and it is their job to decide if they want to take my advice," he says. Giving patients a voice in their decisions may help them become more willing to ask for help. 

When Should You Go to a Doctor for Mental Help?

It is common to have thoughts of anxiety and depression, but Rosenstein says, "It is not that common to have specific thoughts that you would want to take your life." He adds that thoughts of self-blame that you somehow caused your CLL also are not normal. If you have either of these thoughts, get professional help. You can also call 988, the Suicide and Crisis Lifeline, 24 hours a day.

Kayla Meyer, a licensed clinical social worker and co-founder and lead clinician of Pothos Health, says, "When these symptoms begin to affect daily living and you do not have the desire to do things that you enjoy or need to accomplish, or at any time thoughts of self-harm come up, it is a good time to reach out to your doctor and find a qualified therapist."

Suggestions Your Doctor May Have to Help With CLL Mental Health Concerns

In dealing with mental health issues linked to CLL, Botta says, "Your doctor may suggest working with a therapist who treats people with cancer. Many cancer centers also have a team of in-house therapists and psychiatrists who specialize in treating depression that stems from a recent cancer diagnosis or treatment. Meaning-centered psychotherapy, for example, is a form of psychotherapy that is often used with people being treated for cancer. It is focused on recreating a sense of purpose and meaning in the midst of a major loss."

Rosenstein suggests you think about what will best work for you. "Some patients lean on close friends and family members. Others like to gather a lot of information because they deal with worry and uncertainty with data. There are other people who like to rely on their faith-based community," he says. He also suggests a combination of talk therapy and medication when dealing with a serious depressive or anxiety disorder. 

In addition, social workers can help you with positive thinking, mindfulness, and self-care. 

Getting help from mental health providers can help many people who have CLL live active and productive lives. 

You can also check out resources at the CLL Society. There are 40 support groups that meet virtually through Zoom. "Patients have found these groups incredibly supportive," Koffman says. Some are specific to different groups like veterans who have CLL. 

"What is important for the CLL patient to realize is that there is no need to tough out the mental struggles alone and there are options for support," Koffman says.

Binish Eshtiaq

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