When you’re diagnosed with chronic lymphocytic leukemia (CLL), you may need help with practical tasks (such as sorting through treatment options or finding financial assistance for medical expenses) as well as with the emotional challenges of coping with your diagnosis. Your health care team can assist you with many of these concerns. You can also take steps on your own to find the support you need.
Tips for managing the practical concerns you may have after a CLL diagnosis
Find a specialist. See a doctor who specializes in treating blood cancers. This kind of specialist is usually called a hematologist oncologist. To find a blood cancer specialist, ask your primary care doctor to recommend one, or contact a nearby cancer center. For information about hospitals, cancer treatment facilities, and surgical centers contact:
• The American Society of Clinical Oncology’s website, Cancer.Net, offers a “Find an Oncologist” database that allows you to search by many different criteria, including area of specialty, board certification, and location.
• The National Cancer Institute (www.cancer.gov or 800-4-CANCER) publishes a list of NCI Designated Cancer Centers.
• The Leukemia & Lymphoma Society (www.lls.org or 800-955-4572) offers a helpful fact sheet titled “Choosing a Blood Cancer Specialist or Treatment Center.”
Talk with your health care team. Your health care team includes nurses and social workers as well as your primary care doctor, cancer specialist, and/or CLL specialist. Talking openly with members of your team will help you feel more involved in your health care. Remember that you, too, are a key member of the team, so speak up about any concerns you may have.
Make sure you understand the treatment plan your doctor is recommending. CLL can be “indolent” (not growing) for months or years. During this time, “watchful waiting” may be the best treatment option. If this is the case for you, ask your doctor how he or she will decide when to recommend active treatment of your CLL.
Keep written notes. Make notes about symptoms or side effects you notice, and any other questions or concerns you have. This can help you keep track of issues to discuss with your doctor or health care team so that you can get the answers and support you need. You may find it helpful to take someone with you to your medical appointments. Taking notes during conversations with your health care team may be beneficial as well, as you will be able to review what was discussed at a later time.
Stay close to family and friends. Share your thoughts and feelings. Opening up about your diagnosis with family members and friends is not always easy, but it can be helpful, both for you and for them. Talking to a trained counselor or oncology social worker can help you and your loved ones improve communication.
Ask for help. It can be hard to ask for or accept help and you may worry that you’ll be a burden. Friends and family members often want to help, but they might need guidance in knowing how to help. Think about how your loved ones can support you in practical ways. For example, do you need help with household chores, rides to medical appointments, or managing financial paperwork?
Support Groups. A support group provides a chance to meet and interact with other people who can understand your experience. Building a support network can lessen the isolation that often comes with cancer diagnosis. A support group is a unique opportunity to connect with others impacted by cancer. CancerCare provides support groups online, over the phone and face to face. We offer 100 online support groups each year for specific cancer diagnoses, caregivers and the bereaved that are password-protected.
Counseling. Feeling stressed or anxious while coping with cancer is common. Face-to-face or over the phone counseling provides a safe space to voice any concerns to better cope with these changes. An oncology social worker can also help find local resources and programs that fit your needs.