ISNV Sections

Epilepsy due to brain tumor constitutes 6-10% of all cases of epilepsy and 12% of acquired epilepsy. Despite the fact that circa 50% of individuals with brain tumor have epilepsy, the two diseases are usually treated separately (also in the literature) and the majority of patients with brain tumor related epilepsy (BTRE) do not have contact with an epileptologist as part of their primary care team. BTRE is particular in that it represents the sum of two diseases that are both very costly, economically and socially. Despite this, BTRE has been much neglected by major international, governmental funding bodies and equally as much by private ones (i.e. associations for either epilepsy or brain tumor). This is quite unfortunate, because within the context of an aging world population, the most significant increase in brain tumors has been in individuals over the age of 65. However, BTRE also affects individuals between the ages 30-50 and forces many to leave their jobs, as well as depend on at least one family member/caregiver who, in turn, often leaves the workforce. Therefore, it represents a very significant disease burden not only for the patients and their families – but also for society as a whole.

Seizure freedom, or at least a significant reduction of seizure frequency is critical but represents only one of many objectives for improving quality of life in patients with this unique and challenging pathology. Many processes involved in the appearance of seizures in BTRE are not adequately targeted by current anti-epileptic drugs (AEDs). In addition, some of these drugs can also have a significant impact on oncological outcome as well as on QoL. These AEDs can have side effects and drug interactions that weigh on individual and social costs more than in non-oncological epileptic patients. 
Recent discoveries have identified specific receptors, neuro-transmitters, as well as candidate biomarkers predictive of seizure occurrence and of tumor cell progression in BTRE. These discoveries will pave the way for more targeted, less expensive treatments.

Regarding the taking care of patients with BTRE, this particular patients population present a complex therapeutic profile and require a unique and multidisciplinary approach. There are many factors to take into consideration. First, there is the management of pharmacological therapies: the concurrent use of antiepileptic drugs, chemotherapy, and support therapies can present problems with drug interactions and collateral effects. Secondly, maintaining a good quality of life for these patients is a concern. In addition, epilepsy still brings with it stigma and can cause the individual who is diagnosed with the disease to feel socially outcast and severely invalided.
Considering all of these factors, it is understandable that freedom from seizures or at least a reasonable control of them is of utmost importance for the patient, if he/she is to resume his/her professional life, function successfully in a social context, and conduct a satisfying family life.
To accomplish this, it is fundamental that healthcare professionals see the patient as a unique individual with his/her particular needs. This requires a vision of patient management concerned not only with medical therapies but also with emotional and psychological support for the individual as well as his or her family.
In addition, the team of healthcare professionals should create a relationship with BTRE patients that focuses on accompanying them and their family throughout the illness, offering not only medical support, but also the opportunity for patients to be heard and to be supported during medical and personal challenges and/or difficulties.  Taking care of the patient with BTRE means listening to him/her, understanding his/her choices and respecting his/her priorities. Healthcare practitioners need to appreciate the fact that “taking care of” these patients does not mean “curing” as much as it means recognizing and responding to the needs of each unique individual.
All of these issues are key to understanding the nature of this disease, of which we still know very little.
The new insights gained from recent studies, while leading to more questions than answers, continue to make this unique pathology a stimulating and dynamic area of research.