Living With CLL: Managing Anxiety, Depression, and Daily Life

“Oncologists … focus only on the cancer, but we have to look at the patient as a whole. The anxiety, the depression, the change in lifestyle, day-to-day living happens with diseases like CLL,” he adds.

CLL behaves differently than many other cancers. It’s typically slow-growing, and roughly a third of patients diagnosed with early-stage disease may never need treatment at all. They’re placed on “watch and wait” plan, which means regular monitoring without active therapy.

That waiting period can itself be a source of psychological strain on patients and caregivers.

Adjusting to Life With a Chronic Condition

Studies, including research published in General Hospital Psychiatry and the Journal of Clinical Oncology, support Dr. Samhouri’s point that anxiety and depression are common companions of a CLL diagnosis.

“We have to make sure that we identify these reasons and identify how we can help these patients,” Dr. Samhouri says, adding that there are a range of interventions a medical team can offer patients who are struggling.

“If we think the anxiety from living with CLL is to a degree where it needs an expert to talk to them about it, then we have a referral to our supportive care teams where they can either just establish a relationship and talk to our psychologist or maybe start a medication if indicated,” he adds.

The National Comprehensive Cancer Network (NCCN) recommends that every cancer patient be screened for distress starting at diagnosis and at intervals throughout care, using tools like the NCCN Distress Thermometer.

Patients with clinically significant distress can be referred to the appropriate psychosocial resource for further evaluation and treatment. A range of professionals can help patients, such as:

• Social workers
• Psychologists
• Chaplains
• Psychiatrists

An Evolving Definition of ‘Living With Cancer’

“Thankfully, with the newer treatment options … we’re able to control the disease for a long time,” Dr. Samhouri says. “We’re able to get patients back to their baseline lifestyle very quickly and very efficiently.”

This is, generally, good news for patients. Yet the news that “you have a chronic cancer that you have to live with all your life is not easy news for anyone,” or their families, Dr. Samhouri adds.

The treatment landscape for CLL has indeed changed dramatically over roughly the last decade. Targeted drugs — including Bruton’s tyrosine kinase (BTK) inhibitors such as ibrutinib, acalabrutinib, and zanubrutinib, and the BCL-2 inhibitor venetoclax — have largely replaced older chemotherapy-based regimens and are associated with significantly improved progression-free and overall survival.

Treatment combinations are now leading to more remissions and some patients can get fixed-duration treatment, so they can be off treatment after a set amount of time.

Despite the progress, CLL remains, with rare exceptions, an incurable disease.

Dr. Samhouri says that because CLL is highly treatable and very manageable but not curable, helping a patient’s mental health should be part of the diagnostic process.

He emphasizes that psychological support should be treated as a core part of care and not a mere afterthought.

Questions To Ask Your Doctor

• What resources are available to me if I am struggling mentally/emotionally?
• If a professional recommends I begin medication for my mental health, is it safe based on my condition?
• Are there any local support groups you recommend?
• Are their any emotional/mental side effects linked to my treatment plan?

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