What Makes Being Diagnosed with CLL So Surprising
Having someone say the words “you have cancer” can be one of the most surreal moments of your life—especially if that cancer is chronic lymphocytic leukemia, or CLL. A slow-growing blood cancer, CLL is defined by a build-up of lymphocytes (a type of white blood cells) in bone marrow, and, over time, other parts of the body. Because CLL is relatively rare—only about 20,000 new cases are diagnosed every year—many people won’t have heard of it before getting their diagnosis.
On top of that, you might feel great, and assume you’re in perfect health. “Most people feel well and have no symptoms at the time of a CLL diagnosis—though a minority of patients have symptoms such as swollen lymph nodes, unintentional weight loss, fevers, extreme fatigue, or drenching night sweats,” says New Jersey-based oncologist Joshua A. Strauss, M.D. Cases tend to be discovered through bloodwork. Usually, says Dr. Strauss, “A routine blood count will demonstrate an elevation in the lymphocytes, and a follow up blood test called a flow cytometry will be ordered and reviewed by a hematologist showing that some of these cells are leukemic, thus establishing the diagnosis.”
The shock of an unexpected diagnosis is just the first step. Here are some other ways a CLL diagnosis can feel different from other, more familiar cancers.
Your CLL may not be treated right away.
You read that right. A common approach to managing CLL is called “watch and wait.” It means that instead of being rushed into radiation or chemotherapy, you will probably be monitored closely and only treated when it’s deemed necessary by your care team.
Here’s why, according to Dr. Strauss: Many patients will have quiet symptoms where it isn’t obvious there is a problem. “If a disease is not causing symptoms, adversely affecting quality of life, or shortening lifespan, then there is no reason to treat it,” he says. “Even if one has the CLL variety which ultimately will require treatment, there is no evidence that treating it early is better than treating it at the time of symptom onset.” This is where CLL differs from other cancers (such as breast, lung, or uterine) where early treatment is the standard of care.
That being said, feeling like you’re just letting the cancer spread unchecked can be pretty upsetting for patients. “There’s such a cognitive dissonance going on—you just told me I have cancer and you’re not going to do anything about it?” says Brian Koffman, M.D., chief medical officer of the CLL Society. “That’s why patients sometimes call it ‘watch and worry.’ They can’t connect the ideas that they have cancer and nobody is doing anything.”
Dr. Koffman says it’s better to think of this period as an active observation, and to keep in mind that when treatments will benefit you, they will be started. “Until recently, the medications used to treat CLL were quite toxic,” says Dr. Koffman. New treatment options like chemo-free, oral medications are changing this treatment equation—something that not every oncologist might be aware of. “The treatment paradigm for CLL has been turned on its head in the last few years,” says Dr. Koffman. “Because of this, having a CLL expert as part of your health care team can have significant benefits.”
You may experience a host of emotions you aren’t used to feeling.
According to AbbVie’s U.S. Emotional Impact Report (an in-depth survey of CLL patients, caregivers, and health care professionals), CLL patients feel a range of emotions when they first hear their diagnosis. While these feelings can be upsetting—about a third of patients felt worried, uncertain, and tired—they can also be positive: 36% felt optimistic and 41% felt hopeful.
“It’s normal to be on an emotional rollercoaster when diagnosed with CLL,” says Dr. Koffman. “You have anxiety, confusion, and disbelief, but then you find out that CLL is a cancer that has a better prognosis than others, and that a lot of people diagnosed with CLL have a normal life expectancy.”
No matter what emotions you feel, here are some things you can do to help manage them:
Join a support group. “There’s something very valuable about meeting someone else with CLL who has been living with it for decades,” says Dr. Koffman. “Someone to say, ‘I’ve been there and done that.’” There are many support groups around the country where patients can exchange insight and information. “CLL is a hidden disease, so a lot of people don’t talk about it, but that silence can feel like an extra burden,” says Dr. Koffman. “A support group where you can talk to other people can be incredibly helpful.”
Focus on doing what you can. You may not be receiving treatment, but you can still be proactive. “There are things you can do in terms of living a healthier lifestyle that can make you stronger and build resilience,” says Dr. Koffman. “Eating a healthy diet, exercising, not smoking—these kinds of things will protect your heart and other organs so that when you have to start treatment, you’re in the best shape.”
Learn everything you can about CLL. “Smart patients get smart care, so load up on knowledge about CLL,” says Dr. Koffman. “If you’ve already researched treatment options before your doctor recommends immunotherapy or targeted therapy, you already know what they are and how they work.” If reading all about CLL feels overwhelming to you, ask a family member or friend to learn what they can as a way to support you.
Talk to your doctor about your emotions. This is not the time to silently suffer. “Most doctors aren’t mind readers and are pretty busy, so you may need to be the one to bring up that you’re having trouble coping with your CLL diagnosis,” says Dr. Koffman. “You and your doctor can then have a shared conversation about what the best treatment is for you, whether it’s talk therapy or medications.” This is something your doctors have experience with: AbbVie’s U.S. Emotional Impact Report found that 90% of health care professionals recognize a patient’s emotional well-being has an impact on their treatment plan.
If you’re a caregiver, focus on your own mental health too. According to the Emotional Impact Report, nearly three in four caregivers find the role more difficult than expected. “Caregivers are the unsung heroes of a cancer diagnosis,” says Dr. Koffman. “And while they love what they do, it can cause significant emotional stress.” Finding a support group specific for cancer caregivers can help normalize those emotions. “You’ll understand that you aren’t alone and that it’s normal to feel what you’re feeling,” says Dr. Koffman.
You might be amazed at the amount of support you have.
There is no reason to navigate a CLL diagnosis on your own. Lean on your friends and family—according to the Emotional Impact Report, 81% of caregivers feel positively about caring for someone with CLL—as well as your health care team. There are also wonderful national organizations dedicated to providing education and support for those navigating a CLL diagnosis, including the CLL Society. Learn more about some of those support groups here. They understand that patients and their caregivers need—and deserve—more emotional support and resources at the moment they’re diagnosed and throughout the decades that follow.
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