Symptoms of mycosis fungoides (MF) include itchy skin and swollen lymph nodes. Doctors use blood and imaging tests to diagnose MF and determine whether or how far it has spread.
Treatment options for MF include medicines that reduce the number of cancer cells or their growth. They also include treatments that boost or direct the body’s natural defenses against the cancer, such as immunotherapy.
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One of the most common symptoms of MF is red rashes that don’t go away. These rashes may be flat or thicker and scaly. They can appear on any part of the body and are often itchy. MF is a type of lymphoma, which means it starts in blood cells called T cells. These cells normally fight harmful germs in your body. In MF, the T cells transform into cancerous cells that affect your skin and sometimes other parts of your body, like your lymph nodes or internal organs.
In the earliest stages of MF, your skin may have only patches (flat spots) or plaques (raised, scaly bumps). In later stages of MF, you might also have tumors that are sometimes ulcerated. MF can affect people of any race or age, but it is more common in older adults and men. It can also be more serious for people with darker skin.
One type of MF, called folliculotropic mycosis fungoides, is less common and more difficult to diagnose than other types of MF. It usually appears on sun-protected areas of the body and can look like a rash, patches or raised bumps that develop sores. This type of MF can be hard to distinguish from eczema or psoriasis, and some people have it for years before they get the right diagnosis.
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Mycosis fungoides can progress from a red, itchy rash to thicker plaques or tumors. These can be found all over the body or in a limited area. Plaques are raised bumps that have a rough surface and may be red, purplish, or brown in color. In some cases, the plaques ulcerate (form sores). The cancer may also spread to lymph nodes or other organs in the body. Usually, this occurs in the tumor stage of the disease.
Doctors don’t know what causes mycosis fungoides. It may be related to a virus, exposure to chemicals, or your genes. It can happen at any age. Most people get it in their 50s or 60s. Men are two times more likely to have it than women.
Symptoms of mycosis fungoides can take many years to develop and spread. Because the rash looks like many other conditions, people can be misdiagnosed and receive treatment for something else before they are diagnosed with mycosis fungoides. For this reason, it’s important to see your doctor if you have any of the symptoms. Your doctor can do a biopsy of your skin and blood tests to check for mycosis fungoides. In some cases, doctors may do other specialized tests to look at the lymph nodes and other organs. These can include a test to check for changes in the genes that make receptors on T cells (white blood cells). This is called a T-cell receptor gene rearrangement test.
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A tumor is an abnormal mass of tissue that forms when cells grow and multiply more than they should or don’t die when they should. Tumors may be benign (not cancer) or malignant (cancer). In mycosis fungoides, the abnormal cells form small bumps on the skin that are often surrounded by sores and are itchy. The tumors may also resemble light spots or bruises. In some cases, the cancer cells spread under the skin and to lymph nodes and organs. This is called extra-cutaneous mycosis fungoides.
In stage I, the patches or plaques are itchy and cover less than 10 percent of your body. These areas of the skin may also become bumps that resemble a rash or sores and can occur on different parts of the body, including your torso, arms, legs, groin, and breasts. Some of the spots may have a mushroom shape.
In stage II, the scaly patches and plaques can thicken and develop lumps that look like raised nodules or welts. The lumps may bleed, and they can cause a general feeling of illness and weakness, weight loss, fever, headache, and a high blood pressure called hypertension. The tumors can also spread to lymph nodes or organs, such as your spleen and liver. Your doctor will use a variety of tests to find out if you have mycosis fungoides, what type, and what stage it is. These tests may include blood work and imaging procedures, such as CT scans.
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While some people who have mycosis fungoides go through several stages of the disease, most don’t reach the final stage, Sezary syndrome. This is when tumors form under the skin and can grow to cover large areas of the body. It is a form of cutaneous T-cell lymphoma that may be faster-moving than mycosis fungoides and is sometimes considered to be a different disease.
People with Sezary syndrome may develop a rash that looks like eczema or psorias and tends to be found in areas protected from the sun, such as the lower abdomen, thighs, and buttocks. The rash can become itchy and lead to bumps that bleed or ulcerate. This phase of the disease can last for months or years, and it is difficult to diagnose.
A blood test called a complete blood count (CBC) can help determine how much inflammation is present in the body. The test can also help find out if there are abnormal cells in the blood.
Sezary syndrome can be treated with radiation and medications that kill cancerous cells. Some of these drugs are based on chemotherapy and other agents that attack cancerous cells, while others are based on immunotherapy. One example of immunotherapy is photopheresis, a treatment that uses ultraviolet light to treat mycosis fungoides. During this procedure, your blood is drawn into a special machine and the T-cells are separated from the rest of your blood. Then, the T-cells are exposed to ultraviolet rays and then mixed back into your blood.