Diagnosis
Getting the right diagnosis may take time. Cutaneous T-cell lymphoma (CTCL) is hard to diagnose because its rash usually looks like the skin conditions eczema and psoriasis when it first starts. Eczema also is called atopic dermatitis.
The rash can go away and come back. The cycle can repeat for months to years before the rash becomes worse or stops responding to medicine. A dermatologist or other healthcare professional typically begins with a thorough skin exam. CTCL tests and procedures might include blood tests, skin biopsies and imaging tests.
Physical exam
A healthcare professional typically starts with a physical exam to check your skin for scaly areas, growths and unusual patterns. You may be asked you how your symptoms have behaved over time. The healthcare professional also may check for other signs of cutaneous T-cell lymphoma, such as swollen lymph nodes.
Blood tests
Blood tests such as a complete blood count can give information about your condition. Sometimes blood tests show cancer cells in the blood. This is more common with one type of cutaneous T-cell lymphoma called Sezary syndrome.
Skin biopsy
Punch biopsy
Punch biopsy
During a punch biopsy, a round-tipped cutting tool is used to remove deeper layers of skin for testing. Depending on the size, stitches may be needed to close the wound.
Excisional biopsy
Excisional biopsy
During an excisional biopsy, a scalpel is used to cut out a lump or an area of irregular skin and some surrounding healthy skin. As a rule, stitches are needed to close the wound.
A skin biopsy is a key part of getting the diagnosis. It is a procedure to remove cells from the surface of the body so that they can be looked at under a microscope and tested in a lab. The tests can show whether cancer cells are present in the skin.
A healthcare professional may take the sample of skin with a circular cutting tool. This type of biopsy is called a punch biopsy. For larger areas and growths, the healthcare professional may use a small knife. This is called an excisional biopsy.
Skin biopsies don't always detect cancer cells, even when cancer is present. Under the microscope, the biopsied cells might look like cells from a typical rash when symptoms first appear. You might need more than one skin biopsy over time.
Imaging tests
An imaging test takes pictures inside the body. It can show the location and extent of the cutaneous T-cell lymphoma.
If there's concern that the cancer cells have spread to other parts of the body, your healthcare professional may suggest imaging tests. These may include a computerized tomography scan, also called a CT scan, or a positron emission tomography scan, also called a PET scan.
Testing lymphoma cells in the lab
Lymphoma cells collected from a biopsy go to a lab for testing. The healthcare team uses the results to find out the type of cutaneous T-cell lymphoma (CTCL) that you have.
To help decide whether the cells are CTCL cells, these lab tests look for:
- Proteins on the surface of the cancer cells. CTCL cells have certain proteins on their surfaces that can help identify them. These proteins are known as markers.
- Changes in the cancer cells' DNA. Cancer can happen when cells get changes in their DNA. A cell's DNA holds the instructions that tell a cell what to do. Gene changes can cause the cells to multiply rapidly.
More Information
Treatment
Treatments for cutaneous T-cell lymphoma (CTCL) depend on the type. They also depend on how much skin is involved and whether the cancer has spread to the blood, lymph nodes or organs.
Treatment often involves skin-directed therapies and systemic treatments that work throughout the whole body. Treatment may include topically applied medicines. It also may include radiation therapy, light therapy, extracorporeal photopheresis, topically applied chemotherapy, systemic medications or systemic chemotherapy. Sometimes, but not commonly, it may include bone marrow transplant is used. Many treatments exist for this cancer. Your treatment plan may include a mix of treatments.
Skin creams and ointments
Some medicines for CTCL are applied to the skin. The medicines may come in creams, gels and ointments.
Medicines used in this way include:
- Steroid medicines. Steroid medicines put on the skin can help control rash and itchiness.
- Chemotherapy medicines. Chemotherapy treats cancer with strong medicines. Some chemotherapy medicines are put on the skin to kill the cancer cells.
Light therapy
Light therapy for cutaneous T-cell lymphoma involves shining a certain kind of light on the skin to kill the cancer cells. During this treatment, you stand in a treatment area while lamps shine on your skin. The treatment often is given a few times a week for several weeks.
Sometimes light therapy also uses medicine to make the cancer cells easier to hurt with the light. This is called photodynamic therapy.
Radiation therapy
Radiation therapy treats cancer with powerful energy beams. For cutaneous T-cell lymphoma, the energy beams are most often X-rays or electrons. The treatment might target a small area of cancer on the skin. Or it can be given to all the skin on the body but typically does not enter penetrate into the body.
Extracorporeal photopheresis
Extracorporeal photopheresis helps reduce the amount of cancer cells in the blood. The treatment involves removing blood from the body, spinning it to separate cellular components, and then extracting white blood cells. A photosensitizing medicine called 8-methoxypsoralen, is added to the white blood cells. The cells are then exposed to ultraviolet A light. Afterward, the treated cells are returned to the body.
Medicines in pill form or through a vein
Some medicines for CTCL are given in pill form or through a vein. Giving the medicine this way means it travels through the body and can treat the cancer wherever it is growing.
Medicines used in this way include:
- Chemotherapy. Chemotherapy treats cancer with strong medicines. The medicines kill the cancer cells.
- Targeted therapy. Targeted therapy for cancer is a treatment that uses medicines that attack specific chemicals in the cancer cells. By blocking these chemicals, targeted treatments can cause cancer cells to die.
- Immunotherapy. Immunotherapy for cancer is a treatment with medicine that helps the body's immune system kill cancer cells. The immune system fights off diseases by attacking germs and other cells that shouldn't be in the body. Cancer cells survive by hiding from the immune system. Immunotherapy helps the immune system cells find and kill the cancer cells.
Bone marrow transplant
A bone marrow transplant, also called a bone marrow stem cell transplant, involves putting healthy bone marrow stem cells into the body. These cells replace cells hurt by chemotherapy and other treatments. A bone marrow transplant might be used when CTCL is far along or comes back after other treatments.
Prognosis
The cancer prognosis tells you how likely it is that the cancer can be treated successfully. Your healthcare team can get a general sense of your outlook based on the type of cutaneous T-cell lymphoma (CTCL) you have and the stage. The care team also considers other factors such as your overall health. Some CTCL types may cause other cancers.
Your healthcare team will explain your treatment choices and help you pick the ones that are most likely to work well for you.
Clinical trials
Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this condition.
Lifestyle and home remedies
Many people with cutaneous T-cell lymphoma (CTCL) have itchy skin. Caring for your skin may help. Besides what your healthcare professional gives you to control itching, it also may help to:
- Use mild soap with no scent. This might help ease itching. When you wash your skin, use warm, not hot, water.
- Keep skin moisturized. Put a gentle lotion, cream or ointment with no scent on your skin after showers and baths. Use the moisturizer throughout the day as needed. This can help ease itching.
Coping and support
A diagnosis of cutaneous T-cell lymphoma (CTCL) can be a challenge. Here are some ideas that may help you cope.
Learn about cutaneous T-cell lymphoma
Learn enough about your cancer to feel OK making decisions about your treatment and care. Talk with your healthcare team. Ask your care team to recommend good sources to use for more information.
Find a good listener
Finding someone who is willing to listen to you talk about your hopes and fears can be helpful as you manage a cancer diagnosis. This could be a friend or family member. A counselor, medical social worker or clergy member also may offer helpful guidance and care.
It also may help to join a support group or talk with others who have cancer. Ask your healthcare team about local or online groups. Find support online through Mayo Clinic Connect, a community where you can connect with others for support, practical information and answers to everyday questions.
Preparing for your appointment
Start by making an appointment with a doctor or other healthcare professional if you have symptoms that worry you or are not going away.
Here's some information to help you get ready for your appointment.
What you can do
When you make the appointment, ask if there's anything you need to do before you go. Make a list of:
- Your symptoms, including any that don't seem related to the reason for your appointment, and when they began.
- Key personal information, including major stresses, recent life changes and family medical history.
- All medicines, vitamins and other supplements you take, including dosages.
- Questions to ask your healthcare professional.
Bring a family member or friend with you, if possible, to help you remember the information you're given.
For cutaneous T-cell lymphoma (CTCL), some basic questions to ask include:
- What's likely causing my symptoms?
- Are there other possible causes for my symptoms?
- What tests do I need?
- I have other health conditions. How can I best manage them together?
- Are there limits restrictions I need to follow?
- Should I see a specialist?
- Are there brochures or other printed material I can have? What websites do you suggest?
Be sure to ask all the questions you have.
What to expect from your doctor
Your healthcare professional may ask you questions, such as:
- Do you have symptoms all the time, or do they come and go?
- How bad are your symptoms?
- What, if anything, seems to make your symptoms better?
- What, if anything, seems to make your symptoms worse?