Cutaneous T-cell lymphoma: Diagnosis & treatment
Think you might have cutaneous T-cell lymphoma?
See a doctor who has experience with it. You’ll find dermatologists who have experience with cutaneous T-cell lymphoma at Find a Dermatologist. Click on "Filters". Select "Any condition" and choose "Cutaneous lymphoma."
How do dermatologists diagnose cutaneous T-cell lymphoma?
Because the first noticeable signs often appear on the skin, many people see a dermatologist to find out what’s causing their skin problem.
It’s important to understand that it takes time to diagnose cutaneous T-cell lymphoma, also called CTCL. If your dermatologist believes that you may have a type of this cancer, your dermatologist will:
Give you a complete skin exam, checking your skin for signs like rashes and plaques.
Run blood tests.
Perform a skin biopsy, to check for cancer.
Ask what medications you take.
Early cutaneous T-cell lymphoma can be difficult to find because:
A skin biopsy often doesn’t show cancer cells.
Blood tests may not show cancer cells.
These cancers can look like a common skin condition, such as eczema or psoriasis, so your dermatologist will have to rule out these conditions.
For these reasons, it’s important to keep all your dermatology appointments. This helps your dermatologist see what’s happening to your skin over time and order medical tests as needed.
If tests show that you have a type of cutaneous T-cell lymphoma, the next step is to find the stage of the cancer. Stage tells you and your doctors whether cancer is found only in your skin or has spread to another part of your body.
To find the stage, you’ll need medical testing. This may include a chest x-ray, CT scan, or other tests.
How is cutaneous T-cell lymphoma treated?
Treatment depends on the type of cutaneous T-cell lymphoma you have and the stage of the cancer.
Patients who have an early-stage cancer may receive treatment from a dermatologist and sometimes a radiation oncologist (doctor who specializes in treating cancer with radiation).
Are you taking any medications or supplements?
Be sure your doctors know all the medications and supplements you take. Certain ones, including antacids, turmeric, and green tea extract, can prevent treatment from working.
Some patients see a team of doctors. This team may include your dermatologist, a hematologist (doctor who treats blood diseases) or an oncologist (doctor who treats cancer), and a radiation oncologist.
The goal of treatment is usually to achieve one of the following:
Reduce symptoms (aka symptom control): The goal of this type of treatment is to help you feel better without compromising your quality of life.
Symptom control is often the goal for patients who have mycosis fungoides, the most common type of CTCL. Mycosis fungoides tends to advance slowly, so symptom control can help you live life with minimal disruptions.
Remission: When cancer goes into remission, signs and symptoms are reduced. Complete remission means that all signs and symptoms of cancer disappear.
During treatment, pain and other possible side effects may reduce your quality of life or leave you less able to perform everyday activities. Keeping the goal of treatment in mind can help get you through this difficult period.
A treatment plan for cutaneous T-cell lymphoma may include one or more of the following types of treatment.
Treatment for the skin
To destroy cancer cells found in the skin, you may apply medication to your skin, have radiation therapy, or get light treatments. Some patients receive a combination of these treatments.
Medication you apply to your skin: This type of treatment can kill cancer cells in the skin as well as relieve swelling and itch. These medications include:
Corticosteroid: When applied to the skin, this medication can treat cancer and help to reduce inflammation. Less inflammation often means less swelling, itch, and pain. Due to possible side effects, it is prescribed to treat small areas of skin.
Bexarotene (bex-air-ah-teen) gel and tazarotene (tah-zare-oh-teen) gel: These gels are retinoids used to treat early CTCL. These medications can stop or slow growing cancer cells.
Nitrogen mustard gas (mechlorethamine (me-klor-ETH-a-meen) gel: This is chemotherapy that you apply to your skin. It can slow or stop the growing cancer cells. The U.S. Food and Drug Administration (FDA) has approved this medication to treat the most common type of CTCL, which is mycosis fungoides, in its earliest form.
Carmustine (car-muh-steen) is another chemotherapy medication used to treat CTCL. Patients apply it to the skin with CTCL. It’s usually applied for 12 weeks.
Imiquimod (eh-mick-qui-mod): This medication works by stimulating your immune system. It can be effective in treating early-stage CTCL.
Light treatments: Also called phototherapy, this treatment uses a precise, prescribed amount of light to kill cancer cells in the skin.
To receive light treatments, you typically stand in a device called a light box for a specific amount of time. Some patients take a medication called psoralen before standing in the light box. The medication makes their skin more sensitive to the light. When you take psoralen first, the phototherapy is called PUVA.
To receive light treatments, you must go to a treatment center that offers phototherapy. This could be in your dermatologist’s office or a hospital.
Light treatments are typically given 2 to 3 times per week. Most patients need about 20 to 30 light treatments to know whether this treatment is effective.
For many people who have a darker skin tone and light spots on their skin caused by this cancer, phototherapy can put the cancer in remission (reduce symptoms). Phototherapy can also return lost color.
For patients with early cancer, phototherapy may be their only treatment. Sometimes, phototherapy and medication applied to the skin are used to treat early cancer.
Radiation therapy: This is often part of a treatment plan for CTCL. Radiation therapy is used to kill cancer cells and shrink tumors.
It can be quite effective for clearing CTCL on the skin. It may be used to get rid of plaques and other signs of cutaneous T-cell lymphoma that don't clear with phototherapy. Some patients have a complete response (no sign of cancer) after receiving radiation therapy.
Radiation can be prescribed to treat only certain areas of the skin or the entire body. One type, electron beam radiation therapy, sends radiation only to the outer layers of the skin.
For patients with advanced cancer, radiation therapy may be prescribed to help them feel better. For example, slowing or shrinking tumors can help ease pain and discomfort caused by advanced cancer.
Radiation therapy is given at a treatment center or hospital.
Medication that works throughout the body: Several of these medications are used to treat the different types of cutaneous T-cell lymphoma. Here are different types of medications that work throughout the body that may be used to treat CTCL:
Targeted therapy: This type of cancer medication works by targeting specific areas on cancer cells that help the cancer grow and survive.
The FDA has approved brentuximab vedotin (bren-tux-eh-mab veh-dough-tin) (Adcetris®) to treat patients who have a type of cutaneous T-cell lymphoma called systemic anaplastic large cell lymphoma (sALCL) and some patients with advanced mycosis fungoides.
Brentuximab vedotin is designed to attach to the surface of cancer cells and deliver vedotin to kill the cancerous cells.
For brentuximab vedotin, treatment is given intravenously (by IV), so you’ll need to go to a treatment center that offers infusions. Patients receive an infusion once every 3 weeks. How many infusions you receive depends on how your body responds to the medication.
Targeted immunotherapy: This type of medication targets cancerous T-cells in your body and then helps your immune system find and kill the cancerous cells.
The FDA has approved one targeted immunotherapy medication, mogamulizumab-kpkc (moe-gam-eh-liz-u-mab) (Poteligeo®), to treat adults who have tried at least one other treatment for mycosis fungoides or Sézary syndrome, only to find that the cancer came back.
Mogamulizumab-kpkc is given intravenously (by IV), so you’ll need to go to a treatment center that offers infusions. The infusions are usually given once a week for four weeks, and then once every two weeks. How many infusions you receive depends on how your body responds to the medication.
HDAC inhibitor: This type of medication can stop or kill cancer cells. The FDA has approved two of these medications to treat cutaneous T-cell lymphoma:
- Romidepsin (row-muh-dep-sin) (Istodax®) is approved to treat people who have cutaneous T-cell lymphoma and have received at least one other medication that works throughout the body. Romidepsin works by slowing the growth of cancer cells. This medication is given intravenously (by IV), so a nurse or other medical professional will treat you. Each treatment takes at least 4 hours, and you receive treatment once a week.
- Vorinostat [vaw-ree-no-stat] (Zolinza®) is approved to treat people whose disease has not improved, worsened, or comes back after taking other medications. It can kill cancer cells or stop them from growing.
If vorinostat is prescribed, you’ll take a capsule, usually with food. Your doctor will tell you how often to take it. Be sure to take this medication exactly as prescribed. If you have any questions about how to take it, ask your pharmacist or doctor.
Oral retinoids: This type of medication has been used for years to treat CTCL. It can stop the growth of cancer cells.
The FDA has approved one oral retinoid, bexarotene (bek-sr-ow-teen), to treat the tumors and other signs of CTCL on the skin. Due to possible side effects, patients must have tried at least one other medication that works throughout the body before they are prescribed this retinoid.
Chemotherapy: Methotrexate (meth-oh-trex-ate) is a chemotherapy medication used to treat many different cancers, When prescribed to treat CTCL, methotrexate is used to slow down or stop tumors and plaques from growing on the skin.
Interferon: Our bodies naturally produce interferon. It’s part of the immune system’s response. Pharmaceutical companies also make synthetic interferon. This interferon is used to treat the most common types of CTCL, mycosis fungoides and Sézary syndrome.
Clinical trial: If you have advanced CTCL, a clinical trial may be your preferred treatment.
A clinical trial is a research study. It allows scientists to find out how well a new medication or other treatment can treat or prevent a disease. Many of today’s medications and other treatments would not exist without clinical trials. There are benefits and risks to joining a clinical trial.
While your doctor can give you information about a clinical trial, only you can decide whether one is right for you.
Photopheresis: Also called extracorporeal photopheresis, this is a procedure. It’s meant to help your immune system fight cancer.
This procedure begins with a blood draw. The blood taken from your body is placed into a machine that separates your white blood cells from the rest of your blood.
Your white blood cells are then exposed to UVA light after being treated with a medication that makes them more sensitive to light. Your treated white blood cells are then returned to your body.
Patients need to undergo this procedure about 6 to 9 times before the effects are seen.
Surgery: Your doctor may recommend this treatment to remove tumors or other growths on your skin.
Stem cell transplant: This treatment is also called a hematopoietic stem cell transplant or bone marrow transplant. Younger patients may be considered for this treatment if they have cutaneous T-cell lymphoma that:
Has come back after treatment
This is an aggressive treatment. To have a stem cell transplant, you must have a donor who can give you healthy blood-making cells. You must also be physically and emotionally able to undergo the transplant.
A stem cell transplant occurs in two phases. During the first phase, you receive chemotherapy or radiation therapy that damages or destroys your bone marrow. That’s where many blood cells are made.
During the transplant phase, your damaged or destroyed bone marrow is replaced with healthy bone marrow from your donor. The goal of this transplant is to allow your body to make healthy, new blood cells, including T-cells.
Wait-and-see approach: If you have an early-stage, slowly growing type of cutaneous T-cell lymphoma like mycosis fungoides, the best approach may be to watch it rather than treat it. Cancers like mycosis fungoides can remain the same for years. You’ll need to see your doctor regularly so that your doctor can watch you. Keep every appointment.
Dermatologists care for patients’ skin during treatment
If you’ve been diagnosed with CTCL, you may see a dermatologist for:
Skin problems caused by treatment: Some treatments for cutaneous T-cell lymphoma can lead to skin problems or skin disease. For example, retinoids can cause intensely dry skin. Dermatologists treat this dryness with moisturizers and emollients (skin softeners). Sunscreen is used to protect your skin from the sun. Retinoids make your skin sensitive to sunlight.
Dermatologists also treat skin reactions caused by treatment with nitrogen mustard gas.
If you’re taking certain medication, your dermatologist will also check for skin diseases like skin cancer, vitiligo, and non-cancerous skin growths. Vitiligo, which causes the skin to lose some of its natural skin color, usually goes away on its own once you stop the treatment causing it.
If you develop skin cancer or non-cancerous skin growths, your dermatologist can treat these.
Open wounds: If you have tumors or thick patches (plaques) on your skin, these can break open causing wounds. These open wounds require expert medical care.
Skin infections: People with cutaneous T-cell lymphoma have a greater risk of developing skin infections. When tumors or other signs of cancer cover much of your skin, skin infections tend to be common. Skin infections also develop when you have open wounds or scratch frequently.
Some patients who have advanced cutaneous T-cell lymphoma die of an infection. That’s why it’s so important to be under the care of a board-certified dermatologist.
A dermatologist can create a treatment plan to treat the infection. Treatment will include medication and self-care techniques for bathing and sun protection.
Itchy skin: Itch is often the most bothersome symptom. It’s estimated that between 60% and 80% of people who have cutaneous T-cell lymphoma are bothered by itch.
Your dermatologist can relieve the itch by prescribing medication that you apply to your skin, wet dressings, or an antihistamine.
If you have advanced cancer, treating the cancer is often the only way to relieve the itch.
Your dermatologist will also talk with you about caring for your skin at home. The right skin care can help you feel better. More importantly, it can reduce your risk of developing a serious and sometimes life-threatening skin problem.
To find the skin care that dermatologists recommend, go to: Relief for skin problems related to Cutaneous T-cell lymphoma.
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Paula Ludmann, MS
Aaron R. Mangold, MD, FAAD
Elan M. Newman, MD, FAAD
Rajiv Nijhawan, MD, FAAD
Brittany Oliver, MD, FAAD
Last updated: 8/3/23