Mycosis fungoides

Diagnosis

Getting the right mycosis fungoides diagnosis may take time. Mycosis fungoides can be hard to diagnose because its rash usually looks like the skin conditions eczema and psoriasis when it starts.

The rash tends to stay around. It can sometimes lessen or go away and come back from time to time. This cycle can repeat for months or years before a diagnosis is made. A dermatologist will typically begin with a skin exam. Tests and procedures likely will include blood tests, skin biopsies and imaging tests.

Physical exam

A healthcare professional typically starts with a physical exam to look over your skin for scaly areas, growths and unusual patterns. You likely will be asked how your symptoms have behaved over time. The healthcare professional also will usually check for other signs of mycosis fungoides, such as swollen lymph nodes.

Blood tests

Blood tests such as a complete blood count, T cell receptor and flow cytometry could give information about your condition.

Skin biopsy

A skin biopsy is a necessary part of getting a diagnosis. This procedure collects cells from suspicious tissue on the surface of the body so that they can be tested in a lab. The tests can show whether cancer cells are present in the skin.

A healthcare professional might take the sample of cells with a circular cutting tool. This is called a punch biopsy. For larger areas and growths, the healthcare professional might use a small knife. This is called an excisional biopsy.

Skin biopsies don't always confirm that cancer cells are present. A skin biopsy might show microabscesses in the skin cells under a microscope. Microabscesses are tiny clumps of cells in the top layer of the skin that are not typical cells. Sometimes, sampled cells from a biopsy might look like cells from a typical rash under the microscope. Because of this, you might need more than one skin biopsy over time to arrive at the diagnosis.

Imaging tests

An imaging test takes pictures inside the body. It can show the location and extent of the mycosis fungoides if it involves internal organs. If there is concern that the cancer cells have spread to other parts of the body, your healthcare professional might suggest imaging tests. These might include a computerized tomography (CT) scan, or a positron emission tomography scan (PET).

Testing lymphoma cells in the lab

Cancer cells collected from a biopsy go to a lab for testing. In the lab, specialized tests look for specific things about the cells. When viewed under a microscope, the cancer cells have a different appearance compared with healthy cells. The healthcare team uses the results to find more information about the type of cancer cells that you have.

To decide whether the cells are mycosis fungoides cells, the healthcare professionals in the lab look for:

• Proteins on the surface of the cancer cells. The cells can be identified by the presence or absence of certain proteins on their surfaces. These proteins are known as markers.
• Changes in the cancer cells' DNA. Cancer happens when cells get changes in their DNA. A cell's DNA holds the instructions that tell a cell what to do. Gene changes cause the cancer cells to stop dying and start multiplying rapidly.

Treatment

Treating mycosis fungoides depends on the symptoms, how much skin is involved, and whether the cancer is limited to the skin or has spread to the lymph nodes, organs or blood. Treatment often involves skin-directed therapies and systemic treatments that work throughout the whole body. People with early-stage mycosis fungoides are usually seen by a dermatologist first. Then they could be referred to a cancer specialist called a hematologist if skin-directed therapies are not working. People with more advanced forms of the cancer are typically seen jointly by a hematologist/oncologist and a dermatologist. A radiation oncologist could be involved in the treatment of mycosis fungoides if radiation therapy is needed.

Treatment may include medicines, radiation therapy, light therapy and bone marrow transplant.

Mycosis fungoides typically cannot be cured, but many treatments can help reduce symptoms and improve the skin. Your treatment plan may include a mix of treatments.

Skin creams and ointments

Some medicines for mycosis fungoides are applied to the skin. The medicines may come in creams, gels and ointments.

Medicines used in this way include:

• Steroid medicines. Steroid medicines are commonly used to treat mycosis fungoides. Steroids are either applied to the skin or are in the form of pills. Steroids can help control rash and itchiness.
• Chemotherapy medicines. Chemotherapy treats cancer with strong medicines.

Light therapy

Light therapy for mycosis fungoides involves shining a certain kind of light on the skin to kill the cancer cells. During this treatment, you stand in a treatment area while lamps shine on your skin. The treatment often is given a few times a week for several weeks.

Sometimes light therapy also uses medicine to make the cancer cells easier to kill with the light. This is called photodynamic therapy.

Radiation therapy

Radiation therapy treats cancer with powerful energy beams. For mycosis fungoides, the energy beams are most often X-rays or electrons. The treatment might target a small area of cancer on the skin. Or it can be given to all the skin on the body. This is called total skin irradiation.

Medicines in pill form or through a vein

Some medicines for mycosis fungoides are given in pill form or through a vein. Giving the medicine this way means it travels through the body and can treat the cancer wherever it is growing.

Medicines used in this way include:

• Chemotherapy. Chemotherapy treats cancer with strong medicines. The medicines kill the cancer cells.
• Targeted therapy. Targeted therapy for cancer is a type of treatment that uses medicines that attack specific chemicals in the cancer cells. By blocking these chemicals, targeted treatments can cause cancer cells to die.
• Immunotherapy. Immunotherapy for cancer is a treatment with medicine that helps the body's immune system kill cancer cells. The immune system fights off diseases by attacking germs and other cells that shouldn't be in the body. Cancer cells survive by hiding from the immune system. Immunotherapy helps the immune system cells find and kill the cancer cells.

Bone marrow transplant

A bone marrow transplant, also called a bone marrow stem cell transplant, involves putting healthy bone marrow stem cells into the body. These cells replace cells hurt by chemotherapy and other treatments. A bone marrow transplant might be used when mycosis fungoides is far along or comes back after other treatments.

Prognosis

The cancer prognosis tells you how likely it is that the cancer can be treated successfully. Your healthcare team can get a general sense of your outlook based on the stage of the cancer when you were first diagnosed and other factors such as your overall health.

Mycosis fungoides usually has a better outlook when it is in early stages and is still limited to the skin. The cancer typically gets harder to treat as the stage advances or the disease spreads beyond the skin.

Your healthcare team will talk with you about treatment options that will give you the best opportunity for a good outcome.

Lifestyle and home remedies

Many people with mycosis fungoides have itchy skin. Caring for your skin may help. Besides what your healthcare professional gives you to control itching, it also may help to:

• Use mild soap with no scent. This might help ease itching. When you wash your skin, use warm, not hot, water.
• Keep skin moisturized. Put a gentle lotion, cream or ointment with no scent on your skin after showers and baths. Use the moisturizer throughout the day as needed. This can help ease itching.

Coping and support

A diagnosis of mycosis fungoides can be a challenge. Here are some ideas that may help you cope.

Learn about mycosis fungoides

Learn enough about your cancer to feel OK making decisions about your treatment and care. Talk with your healthcare team. Ask your care team to recommend good sources to use for more information.

Find a good listener

Finding someone who is willing to listen to you talk about your hopes and fears can be helpful as you manage a cancer diagnosis. This could be a friend or family member. A counselor, medical social worker or clergy member also may offer helpful guidance and care.

It also may help to join a support group or talk with others who have cancer. Ask your healthcare team about local or online groups. Find support online through Mayo Clinic Connect, a community where you can connect with others for support, practical information and answers to everyday questions.

Preparing for your appointment

Start by making an appointment with a doctor or other healthcare professional if you have symptoms that worry you or are not going away.

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask if there's anything you need to do before you go. For example, you may be told not to eat before you have a certain test. Make a list of:

• Your symptoms, including any that don't seem related to the reason for your appointment, and when they began.
• Key personal information, including major stresses, recent life changes and family medical history.
• All medicines, vitamins and other supplements you take, including doses.
• Questions to ask your healthcare professional.

Bring a family member or friend with you, if possible, to help you remember the information you're given in case you feel overwhelmed at the appointment.

For mycosis fungoides, some basic questions to ask include:

• What's likely causing my symptoms?
• Other than the most likely cause, what are other possible causes for my symptoms?
• What medicines or creams can I use to help manage my rash?
• What tests do I need?
• What's the best course of action?
• I have other health conditions. How can I best manage them together?
• Are there restrictions I need to follow?
• Should I see a specialist?
• Are there brochures or other printed material I can have? What websites do you suggest?

Be sure to ask as many questions as you need to understand what is ahead.

What to expect from your doctor

Your healthcare professional may ask you questions, such as:

• When did your symptoms begin?
• Do you have symptoms all the time, or do they come and go?
• How bad are your symptoms?
• What, if anything, seems to make your symptoms better?
• What, if anything, seems to make your symptoms worse?