If you’ve recently been diagnosed with cutaneous T-cell lymphoma (CTCL), you probably have many questions and concerns. This fact sheet is intended to help you learn about CTCL, find answers to your questions, and find sources of support.
What is CTCL?
CTCL is a rare cancer that affects white blood cells called T-lymphocytes (T-cells). T-cells are important to your immune system, which helps the body fight infection. When T-cells start to grow too quickly, they can accumulate in the body. In CTCL, T-cells accumulate in the skin, causing a rash or scaly patches that may be very itchy. In its early stages, CTCL may be mistaken for a skin condition like eczema.
Coping with Symptoms of CTCL
Be gentle with your skin. Shower or bathe in lukewarm water. Choose skin cleansers free of fragrances and alcohol. Avoid bubble bath and after-bath powders that may aggravate itching.
Protect your skin from the sun. Wear a hat with a brim and put on sunscreen. If your treatment includes ultraviolet light therapy, wear sunglasses that block the sun’s ultraviolet light. Small amounts of sunlight may be helpful for some people with CTCL, so talk with your dermatologist about how best to protect your skin from the sun.
Keep a symptom diary. It may take some time to find a skin care plan that works best for you. Keep notes on what you tried, what worked, and what did not work.
Communicating with Your Health Care Team
Be sure you’re comfortable talking with your health care team. Your health care team may include a dermatologist and cancer specialist as well as your primary care doctor, oncology nurses, and oncology social workers. It is important for you to share your concerns and questions with them. Remember, you are a key member of the team.
Be involved in your care. Make a list of questions to ask your doctor or health care team. Taking notes during appointments can help. Reviewing the notes later will help you remember what was discussed.
Understand your treatment plan. Many factors need to be considered in choosing the treatment that’s best for you. Be sure that you understand and are comfortable with the treatment plan your doctor has proposed. Consider getting a second opinion from a specialist in CTCL.
Share your feelings. When you have CTCL, you may feel uncomfortable because of skin itching or embarrassed by how your skin looks. Consider joining a support group where you can share experiences and learn from other people coping with CTCL. CancerCare’s support groups, led by professional oncology social workers, connect you with others who are in a similar situation. We offer face-to-face support groups as well as telephone and online groups—all completely free of charge. Organizations such as the Cutaneous Lymphoma Foundation (www.clfoundation.org) also offer online and face-to-face support groups for people coping with CTCL, as well as helpful educational materials.
Stay close to family and friends. Let your loved ones show their concern by helping out in practical ways such as doing chores, driving you to appointments, or simply listening when you need to talk.
Learn about support in your community. Community organizations that support people with cancer may be able to offer volunteer drivers, respite care, and other services. Talk to an oncology social worker about help that may be available in your community.
Make time for yourself. Practicing meditation, exercise, and yoga may help in coping with the stress of cancer.