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Why is testing so important?
Changes on your skin may be easy to notice, but testing plays an important role in understanding what these changes mean. Since CTCL can go deeper than the skin, there may be more to your disease than what you see with your eyes.
Your doctors may have already done some tests to confirm your CTCL diagnosis. Additional testing helps track how your CTCL is changing on your skin, in your blood, and in other parts of your body.
Tests you can expect with CTCL
Your doctors may continue to do more tests to evaluate how or if your cancer changes over time.
These tests may include:
- Physical exam: Your doctor will check your overall health, including a close look at your skin
- Blood test: Your doctor will check your blood for signs of cancer, including counting any lymphoma cells they find. This may include a type of blood test called flow cytometry
- Biopsy: A procedure in which a piece of tissue or a sample of cells is removed from your body and tested in a lab. Your doctor may do several skin biopsies and may also do biopsies of your lymph nodes
- Scans: To examine your lymph nodes and other organs, your doctor may use computed tomography (CT) scans and positron emission tomography (PET) scans
“After years and years of being misdiagnosed, my new doctor finally found out I had CTCL after doing a skin biopsy.” — Ron, a real patient living with CTCL
Stages of CTCL
There are 4 main stages of CTCL. Determining the disease stage helps your care team provide you with the best treatment plan for you. Below are key signs of each stage.
Stage 1
- Stage 1A: Less than 10% of the skin is covered in patches and/or plaques
- Stage 1B: 10% or more of the skin is covered in patches and/or plaques
- Low levels of cancer cells may or may not be found in the blood
Stage 2
- Stage 2A: Any amount of the skin is covered in patches and/or plaques with enlarged lymph nodes
- Stage 2B: Tumors, 1 cm or larger, appear on the skin, and lymph nodes may be enlarged
- Low levels of cancer cells may or may not be found in the blood
Stage 3
- Stage 3A: At least 80% of the skin is covered with a severe rash (erythroderma) and may have plaques, patches, or tumors, and lymph nodes may be enlarged
- Stage 3B: At least 80% of the skin is covered with a severe rash (erythroderma) and may have plaques, patches, or tumors; lymph nodes may be enlarged; and low levels of cancer cells can be detected in the blood
Stage 4
- Stage 4A1: Any percentage of the skin may be covered in a severe rash (erythroderma) and may be covered in patches, plaques or tumors. The cancer has spread to blood. Lymph nodes may be enlarged
- Stage 4A2: Any percentage of the skin may be covered in a severe rash (erythroderma), patches, plaques, and/or tumors. The cancer has spread to the lymph nodes. The blood may or may not be affected
- Stage 4B: Any percentage of the skin may be covered in a severe rash, patches, plaques, and/or tumors. The cancer has spread to other organs in the body. The blood and lymph nodes may or may not be affected
Knowing the stage of your CTCL and whether your disease is staying the same or changing over time is important. And if your CTCL spreads, it can feel a bit scary or confusing. But remember you’re not alone, and the members of your care team are experts. They will talk with you about treating your CTCL and will determine how best to manage your CTCL over time.
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