Q: What is the progression of the disease?
A: The course of CTCL-MF is unpredictable. Some patients will progress slowly, others rapidly or not at all. Most patients will only experience skin symptoms without serious complications. About 10% will experience progressive disease symptoms with lymph node and/or internal involvement with serious complications. Many patients live normal lives while they treat their disease and some are able to remain in remission for long periods of time.

Treatment of cutaneous lymphoma is specific to each individual and depends on the symptoms and stage of the disease. Treatment can be directed at the skin, the entire body (systemic), or both. Become familiar with the different treatment options so you can discuss them with your doctor and find the best combination for you.

Skin treatments include:

Dr. Marie-France Demierre of Boston University School of Medicine, Director of Skin Oncology, collaborated with the Cutaneous Lymphoma Foundation in 2005 on a study of patients’ health-related quality of life.

The study found that five important themes affected the quality of life of cutaneous lymphoma patients:

• role functioning
• health distress
• treatment satisfaction
• symptoms of disease
• emotional well-being

Here is a summary of the findings:

There is a greater frequency among men than women and it is more common after the age of 50. There are approximately 16,000 to 20,000 cases across the United States and approximately 3,000 cases across Canada. Due to the difficulty of diagnosing the disease in its early stages, and the lack of an accurate reporting system, these numbers are estimates.

Although scientists are continuing to research cutaneous lymphomas, so far no single factor has been proven to cause this disease. There is no supportive research indicating that this is a genetic or hereditary disease. Studies have also failed to show a connection between chemical exposure, environment, pesticides, radiation, allergies or occupational environments. Exposure to Agent Orange may be a risk factor for developing CTCL-MF in veterans of the Vietnam War, but no direct cause-effect relationship has been established.

One of the problems in describing this disease is that it doesn’t look the same for all patients. Patches, plaques and tumors are the clinical names of the different presentations. Patches are usually flat, possibly scaly and look like a “rash.” CTCL-MF patches are often mistaken for eczema, psoriasis or “non-specific” dermatitis until an exact diagnosis of CTCL-MF is made. Plaques are thicker, raised lesions. Tumors are raised “bumps” which may or may not ulcerate.

Cutaneous lymphoma is a general term for many lymphomas of the skin including cutaneous T-cell lymphoma, mycosis fungoides, Sézary syndrome, cutaneous anaplastic large cell lymphoma, adult T-cell leukemia/lymphoma, peripheral T-cell lymphoma, lymphomatoid granulomatosis, granulomatous slack skin disease, B-cell lymphoma, and pagetoid reticulosis to name a few.

FAQ

How Geography Plays  Role

Coping