Most people with mycosis fungoides wait years for a diagnosis
Mycosis fungoides is a rare type of lymphoma that occurs only in the skin. It can look like other skin diseases, making it difficult to diagnose.
People with mycosis fungoides typically live for many years with their disease, particularly if it is diagnosed at an early stage, when it consists of patches or plaques of dry, red and sometimes thickened skin that affect a small area of the body. For most people, the disease gets worse very slowly. Some people have a more rapid progression to disease that needs intensive forms of treatment, and these people have a worse outlook.
PROCLIPI is a research study collecting the information needed to develop an improved ‘prognostic index’ for mycosis fungoides and Sézary syndrome, another skin lymphoma. Finding ways to identify people at risk of rapid progression could allow those people to be managed better and improve their outlook.
Because skin lymphomas are rare, data are being collected at University of Birmingham from many countries from around the world as part of the PROCLIPI study led by Julia Scarisbrick. Initial findings have been reported on 430 people with early-stage skin lymphoma enrolled in the study so far.
The initial results show that early-stage mycosis fungoides is typically only diagnosed several years after symptoms develop, with an average of 3 years between the first symptom and diagnosis. This delay could be very difficult for the people affected, and risks them being treated with inappropriate treatments.
The study is following-up people with all stages of mycosis fungoides and Sézary syndrome to see how they respond to treatment, and to create a set of data that can be used to find out more about the progression of these rare lymphomas and improve their management. Data on quality of life are also being recorded, with the hope of being able to improve the well-being of people with these lymphomas, as well as prolonging survival.
If you were diagnosed with mycosis fungoides or Sézary syndrome in the last 6 months, you might still be able to join the study. Find out more about this study or search for another study you might be able to get involved in at Lymphoma TrialsLink.