FAQ
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.
Q: How is CTCL-MF diagnosed and what kinds of tests should I expect?
A: CTCL-MF is difficult to diagnose in early stages, as the symptoms and skin biopsy findings are similar to other skin conditions. CTCL-MF is frequently misdiagnosed as other skin conditions and patients may go for years before a definitive diagnosis is established. Both the clinical picture (based on both history and examination) and the skin biopsy findings are essential for diagnosis. Your physician will examine your lymph nodes and order various blood tests including a test for Sézary cells in the blood. Other screening tests such as a chest x-ray or CT scan may be indicated, depending on the patient’s history.
Q: Is there a cure for CTCL?
A: While we can’t truthfully say there is no known cure for CTCL, it is important to consider the definition of cure. Some patients can be put into long-term remission (many years) with treatment, which may be considered a cure. The most recent research has indicated that patients diagnosed with early stage CTCL-MF (which is 70-80% of patients diagnosed) will have a normal life expectancy. It is also important to remember that statistics deal with groups of people, not individuals. In the last few years there has been much more research, better treatment options and more collaboration among physicians, all contributing to better care for CTCL patients.
A: While we can’t truthfully say there is no known cure for CTCL, it is important to consider the definition of cure. Some patients can be put into long-term remission (many years) with treatment, which may be considered a cure. The most recent research has indicated that patients diagnosed with early stage CTCL-MF (which is 70-80% of patients diagnosed) will have a normal life expectancy. It is also important to remember that statistics deal with groups of people, not individuals. In the last few years there has been much more research, better treatment options and more collaboration among physicians, all contributing to better care for CTCL patients.
Q: Is CTCL contagious?
A: CTCL is not contagious. It is not an infection and there are no infectious agents known to cause the disease. There has been research investigating the role of viruses, but the results are inconclusive.
A: CTCL is not contagious. It is not an infection and there are no infectious agents known to cause the disease. There has been research investigating the role of viruses, but the results are inconclusive.
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Contact Information:
Canadian Skin Patient Alliance
2446 Bank Street, Suite 383
Ottawa, Ontario
K1V 1A8
Sheri Pilon, Program & Services Manager
phone: 613-224-4266
fax: 613-422- 4267
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