OPTIMIZING CARE FOR PATIENTS WITH BRAIN TUMORS

Dr Sidnei Epelman (far left) visits with Brazilian children being treated for brain and spinal cord tumors. He and his wife, Claudia, are founding members of the Brain Tumor Association for Children and Adolescents (TUCCA) in São Paulo.

Cancer of the brain is a devastating illness. Because of the damage caused by the tumor itself (and by subsequent treatment, be it surgery, radiation or chemotherapy), most patients with brain tumors develop neurological, emotional and intellectual difficulties that compromise their ability to live independently, to study and to work.

In Brazil, 1400 new patients with brain tumors are diagnosed every year, the majority between the ages of 4 and 9 years. Today, if treated adequately, more than 60% of such patients may be cured. However, in addition to disabilities resulting from brain damage caused by the tumor itself, after treatment, patients may suffer from intellectual impairment, usually manifested as low IQ and memory loss, visual impairment or speech alterations. These late effects are seen especially in patients under the age of 3 who have been treated with radiotherapy but can also be associated with chemotherapy. Such sequelae can lead to social, learning and psychological disabilities. The protocols used are designed to avoid or delay the use of radiotherapy but this cannot always be achieved; an alternative, if available, is to use conformal radiotherapy in which the radiation beam is closely adapted to the shape of the tumor from whatever angle the radiation is directed, thus reducing the irradiation of normal brain tissue.

In order to cure more children while also reducing the likelihood of long- term ill-effects, the Brain Tumor Association for Children and Adolescents (TUCCA), a charitable organization, was founded in 1998. The association is dedicated to improving treatment, quality of life, and the long-term outlook for young patients with brain and spinal cord tumors through research, multidisciplinary support, education and advocacy for families and survivors.

Since last year, the association has also begun to develop strategies directed towards reducing late diagnosis and improving treatment results in patients with retinoblastoma, a tumor of the eye. A national campaign to draw attention to the significance of leucokoria (a white gleam in the pupil that is a frequent early sign of the disease), amongst pediatricians, ophthalmologists and the population in general was developed in association with INCTR.

TUCCA has joined in a collaborative effort with a number of institutions in Brazil to fund support programs and improvements in the quality of life for children and their families that would otherwise exceed the budgets of the institutions; TUCCA raises funds through donations and events, including gala dinners and recitals. The association also distributes a free guide for the parents of children with brain tumors throughout Brazil, co-sponsors educational seminars and conferences, and provides online information through www.tucca.org.br.