Cutaneous T cell lymphoma: When a rash is actually cancer

Did you know that lymphoma is an umbrella term that includes several subtypes? In general, lymphoma is a cancer that involves immune cells, either T cells or B cells.

These cells travel throughout your body to help protect you from infection and illness. That includes traveling to the skin to help heal a cut or clear an infection.  

But sometimes, these cells can go haywire, start to build up at the skin and become cancerous.

We spoke with Auris Huen, M.D., about skin lymphomas. She answered seven questions about these rare diseases.

1. What is cutaneous T cell lymphoma?

Although skin lymphoma can originate from B cells, it’s more often seen with T cells. This is known as cutaneous T cell lymphoma. There are two main subtypes of cutaneous T cell lymphoma:

• Mycosis fungoides is the most common subtype. It’s slow growing and often easier to treat.
• Sézary syndrome is a more aggressive subtype of cutaneous T cell lymphoma. In addition to cancerous cells building up at the skin, they are also in the blood.

2. Is cutaneous T cell lymphoma a skin cancer or a blood cancer?

It’s sort of in between. Because it involves T cells that are produced in the bone marrow, cutaneous T cell lymphoma is technically a blood cancer. But most cases only involve the skin and can be treated like a skin condition.

For example, at MD Anderson, patients with a cutaneous T cell lymphoma are often first referred to the Cutaneous T Cell Lymphoma Clinic, which is part of our Melanoma and Skin Clinic. Our patients are cared for by a team of dermatologists who specialize in the disease. However, we work closely with our colleagues in the Lymphoma and Myeloma Center to manage all aspects of the disease.

3. What does cutaneous T cell lymphoma look like?

There are several ways cutaneous T cell lymphoma can appear. In its early stages, it can look like flaky, dry skin, so it’s often mistaken for eczema. It can also appear scaly like psoriasis and even as blisters on the skin.

As the disease progresses, it can continue to develop into thicker patches known as plaques.

Those plaques sometimes continue to develop into lumpy areas of the skin or into ulcers. That’s what we call tumors for this disease.

Some patients have a red, flaky rash that covers their entire bodies. It can look almost like a third-degree sunburn. This is known as erythroderma and is more commonly seen in patients with Sézary syndrome.

4. How is cutaneous T cell lymphoma diagnosed?

Because cutaneous T cell lymphoma can look like several other skin issues, it can be a challenging disease to diagnose. There have also been situations where people feel itchy or burning but aren’t showing any redness. Or, for patients with a darker skin tone, it’s more challenging to see the redness.  

If there isn’t an explanation for the discomfort, or if a rash isn’t responding to typical treatment, a skin biopsy is the first step to learning more.

Cancer centers like MD Anderson have pathologists who specialize in cutaneous lymphoma. We also have resources such as additional pathology stains and next-generation sequencing molecular testing that reveal even more specifics about a diagnosis and help us refine treatment.

5. How is cutaneous T cell lymphoma treated?

Approximately 80% of patients will have the disease remain in their skin. It’s not uncommon for people to go years without realizing they have cutaneous T cell lymphoma. Instead, they’ll assume they’ve had eczema or psoriasis. Our first treatment approach is typically a mid- or high-potency steroid. Sometimes that’s all that is needed, but if that doesn’t clear it, we have chemotherapy and immunotherapy that are applied as creams.

If the skin lymphoma continues to spread to more than 10% of a patient’s body, it becomes more challenging to use a cream as treatment since it has to be applied to a larger area. That’s when we turn to ultraviolet therapy or photodynamic therapy.  

6. What treatment options are available for advanced cutaneous T cell lymphoma?

If a patient develops plaques or tumors, or if the disease turns internal and starts to spread to the lymph nodes, this is known as advanced disease.

We co-manage treatment with our colleagues in radiation therapy. They specialize in treating lymphoma of the skin, so they’re able to give patients the lowest possible radiation dosage that’s still effective.

Additionally, patients with advanced disease may be treated with oral retinoids, monoclonal antibodies and/or chemotherapy. Patients at MD Anderson also have access to a large number of clinical trials for this disease.

7. What’s your advice for someone newly diagnosed with cutaneous T cell lymphoma?

Although cutaneous T cell lymphoma can seem like a milder cancer diagnosis, it’s important to see an expert who specializes in this disease. Going to someone unfamiliar with this disease could  delay accurate diagnosis and optimal treatment.  

Not every patient needs to receive systemic chemotherapy and endure those side effects. It’s also possible to receive too high a dose of radiation therapy, which then prevents you from being eligible for the therapy in the future. At a specialized center like MD Anderson that takes a multidisciplinary approach, you will have a multidisciplinary team of dermatologists, radiation oncologists and medical oncologists working together to come up with the best treatment plan for you. And we’re treating this rare diagnosis every day.

Lastly, cutaneous T cell lymphoma can be a very visible disease. It can impact your body image and self-esteem, so take the time to research where to seek care. There are a lot of factors at play. It’s not just about your diagnosis and getting your disease in remission; it’s also about your overall well-being and your quality of life.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.