To help people with mycosis fungoides, a rare form of non-Hodgkin’s lymphoma, better understand their disease, the National Comprehensive Cancer Network (NCCN) has published two new educational resources: the NCCN Guidelines for Patients and NCCN Quick Guide focusing exclusively on mycosis fungoides.
Their release completes the series of NCCN Guidelines for Patients: Non-Hodgkin’s Lymphomas (NHL). The series was supported by funding from the NCCN Foundation.
“As part of a relatively small patient population, people diagnosed with Mycosis Fungoides have limited credible resources from which to learn about their disease,” the Foundation’s executive director, Marcie R. Reeder, MPH, said in a press release. “NCCN Foundation is proud to offer these patients and their caregivers educational resources tailored specifically to their needs in order to empower them to make informed decisions about their health care.”
According to NCCN, mycosis fungoides, also known as Alibert-Bazin syndrome or granuloma fungoides, is one of the most common forms of cutaneous T-cell lymphoma. It usually affects the skin, but can progress to internal tissue over time. Symptoms often include rash, tumors, and skin lesions.
NCCN publishes thematic guidelines with patient-friendly translations of the NCCN Clinical Practice Guidelines in Oncology, which are easy-to-understand resources based on clinical practice guidelines used by healthcare professionals. Both the NCCN Guidelines for Patients and the Quick Guide (one-page summaries of key points in the guidelines) include elements written in a clear voice, like questions a cancer patient should ask of a doctor, a glossary of key terms, and medical illustrations of anatomy, tests, and treatment options.
Each document is written with guidance from leading cancer experts, with the aim of helping patients and physicians to better communicate and decide together on treatment paths and discuss options.
The NCCN Foundation is a philanthropic organization created to empower people through knowledge and improve the quality, effectiveness and efficiency of cancer care, so that patients can live better lives.
While the medical community is not sure about what causes mycosis fungoides, this type of lymphoma does not appear to be hereditary. It is more common in men than women. Treatment options include direct sunlight, ultraviolet light, topical corticosteroids, chemotherapy and radiotherapy.