CTCL Info
Breaking down CTCL
Cutaneous T-cell lymphoma (CTCL) is a type of cancer called a lymphoma that affects a type of white blood cell in your body called a T-cell. Because CTCL appears on the skin, it can sometimes be mistaken for a skin condition and commonly misdiagnosed as eczema or psoriasis. However, it is a serious cancer that can affect more than skin over the course of a lifetime. Let’s take a closer look at the name to understand more.
Related to or affecting the skin
A type of white blood cell in the body; in this case, T-cells can travel to the upper layers of the skin and inside the body
A cancer of the lymphatic system, which is part of the immune system. Think of the immune system as your body’s way of fighting germs
Where can CTCL travel?
It’s likely you discovered CTCL on your skin, but know it doesn’t always stop there. Be aware of how and where CTCL can progress (or get worse).
Skin
While each person’s experience with CTCL is unique, everyone with CTCL experiences skin irritations—which may include dry skin, redness, scaling, patches, plaques, tumors, and repeated itching and/or burning.
Blood
CTCL can move beyond the skin and into the blood—and you may not feel or even notice it.
Lymph nodes
CTCL can also travel to lymph nodes where it can grow and affect the immune system.
Organs
While rare, lymph nodes, liver, spleen, and lungs have been affected in some people with CTCL.
Common subtypes of CTCL :
mycosis fungoides and Sézary syndrome
Everyone who has CTCL experiences it differently. Most people with CTCL can be classified into 1 of 2 main subtypes. Knowing your subtype can help you understand your CTCL.
Mycosis Fungoides (MF)
Sézary syndrome (SS)
How common is it?
Most people with CTCL have MF (50%-70%), and some people (~12%) with MF experience rapid progression (or disease worsening) to advanced-stage MF.
How can it progress?
In the early stages, many people only experience skin symptoms, which may include redness, rashes, and smaller patches. But if these skin symptoms progress, larger areas of the skin will be affected with more intense redness, scaling, and lesions. In some people, CTCL can spread to other parts of the body such as the blood and lymph nodes.
How is it managed?
Treatments applied directly to the skin are the first line of treatment in CTCL, and can be used in MF. Some people will also need a systemic treatment that is either taken by mouth, injected, or infused so the treatment can spread throughout the body.
How common is it?
Unlike MF, SS is not as common and has been known to affect approximately 3% of people with CTCL.
How can it progress?
SS is a very serious form of CTCL that affects the skin and blood. Sometimes, it can spread to the lymph nodes and, in some cases, to internal organs.
How is it managed?
Because SS can be very serious, it usually requires more aggressive treatment approaches than MF.
Keeping track of CTCL symptoms
By now, you know CTCL is a cancer that can progress (or worsen). Stay ahead of CTCL by keeping track of your skin symptoms and working closely with your doctor to monitor your CTCL.
Remember your CTCL can:
Spread because cancerous T-cells responsible for CTCL can travel to the upper layers of your skin and inside of your body
Worsen into advanced stages over the course of your disease despite treatment
Be unpredictable because no one can predict when or if your CTCL will progress
While your doctor or care team will be evaluating your symptoms during each office visit, it’s up to you to communicate with your doctor during and in between office visits to share the details of your ongoing symptoms.
Different ways to track your CTCL
- Conduct physical exams
- Perform blood tests
- Check organs, including your lymph nodes, spleen, liver, and lungs
- Ask certain questions to understand how itchy your skin may be, and how it may be affecting your life
- Ask questions about any tests your care team may be using
- Write down the results of each test when they are performed
- Keep a journal to log how you feel and how your symptoms are changing
- Take pictures of your patches, plaques, and tumors with a camera or smartphone to share with your care team
Take action by talking to your doctor
Talk to your care team about ways you can work together as partners to help manage the challenges and risks of your CTCL.
Our doctor discussion guide can help you start that conversation.
Download the doctor discussion guide and print it out to bring with you to your next appointment.
