Diagnosed with brain cancer in the pineal gland, a high-grade pineal parenchymal tumor of intermediate differentiation (PPTID), at the age of 10, Rafi only underwent VP shunt placement and radiation because surgery was not possible given the sufficiently large mass that was already pressing on the brainstem and thalamus. The type was malignant, prone to recurrence and spread to surrounding tissues, so his parents sought an alternative with ECCT concurrently with radiation. The response was quite rapid. After one month of use, he was able to resume nearly normal activities. After 6 months of use, his tumor mass, which was initially 3 cm, had almost disappeared. His condition returned to normal, growing and developing normally until he could attend university, surviving 12 years since the tumor was first diagnosed.
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At the age of just 10, Rafi was diagnosed with a brain tumor in the pineal gland, which is a brain center that plays an important role in producing and regulating the body’s endocrine hormones. Biopsy results showed a malignant high-grade pineal parenchymal tumor of intermediate differentiation (PPTID). High-grade brain tissue cancer in the pineal region generally involves types of glioma, high-grade glioma (HGG) such as astrocytoma (WHO grade 3) or glioblastoma (grade 4). MRI results showed a tumor mass approximately 3 cm in size precisely at the center of the pineal gland, obstructing the flow of cerebrospinal fluid in the fourth ventricle, causing hydrocephalus. Rafi’s condition at that time was being treated in the hospital due to severe headaches and inability to get up.
The pineal gland’s primary function is to produce the hormone melatonin, which plays an important role in regulating natural sleep-wake cycles, and also affects the reproductive system, especially during puberty. This gland is also known as the “third eye” due to its ability to detect light through signals it receives from the retina. Philosopher René Descartes even referred to the pineal gland as the “principal seat of the soul,” or “the center where life resides.” He argued that all our thoughts and feelings originate from this gland due to its unique location in the center of the brain and its ability to move, which he believed allowed interaction with the spirits that control bodily functions.
Pineal gland cancer can have various effects on the body, mainly due to its location in the brain near important structures, including: headaches that often worsen in the morning or with sudden movements, vision disturbances because the tumor presses on the optic nerve or brain areas controlling vision, causing blurred, double, or partial vision loss and impaired eye movements, nausea and vomiting, problems with balance and walking, seizures, and hydrocephalus. This tumor can also affect cognition and behavior such as mood changes and anxiety due to melatonin deficiency (a hormone produced by the pineal gland), which can affect mood and cause anxiety, sleep disturbances, and insomnia.
The prognosis for high-grade glioma pineal gland cancer (such as glioblastoma) is generally poor, as these tumors are aggressive and difficult to treat. Glioblastoma, for example, is a highly aggressive high-grade tumor with a worse prognosis compared to low-grade glioma. Life expectancy for high-grade glioma pineal gland cancer, such as glioblastoma, is generally poor, with a relatively short average life expectancy after diagnosis. Glioblastoma (astrocytoma grade IV) is the most common and aggressive type of glioma, with an average life expectancy after diagnosis ranging from 14 to 16 months. Factors affecting life expectancy include patient’s age, overall health condition, tumor severity, tumor location, and how the tumor responds to treatment, all of which can affect life expectancy.
Therapy for high-grade glioma in the pineal gland generally involves a combination of surgery, radiotherapy, and chemotherapy. Radiotherapy and chemotherapy are used to kill residual cancer cells post-surgery and inhibit tumor growth. Surgery aims to remove as much of the tumor as possible, but surgery was difficult for Rafi’s case due to the high-risk location of the tumor and its already considerable size, pressing on the brainstem and the brain’s nerve center (thalamus). If not operated on, the recurrence rate of high-grade glioma (HGG) pineal gland cancer is very high. Without surgical removal, this type of cancer cell will continue to grow and spread to surrounding brain tissue. Even after surgery combined with treatments like radiation or chemotherapy, malignant tumors like HGG have a high tendency to recur. This type of recurrence tends to be faster and more aggressive without surgery, thus requiring strict monitoring and integrated medical care.
The only feasible medical option for Rafi at that time was radiation, with a high risk of recurrence and continued faster and more aggressive growth, because surgery was not possible. Therefore, Rafi’s parents then sought another alternative with ECCT concurrently with radiation. ECCT became important for long-term protection, especially for cases prone to regrowth and spread.
Rafi received an ECCT device in the form of a head-covering helmet and started using it in late September 2013. He wore it concurrently with the radiation process, which involved 30 sessions over approximately one month in the hospital. Before radiation, he underwent surgery for VP shunt placement to drain the blocked cerebrospinal fluid. The reaction after using the device was quite rapid. Discharges included sweat, very foul-smelling feces and gas, and excessive urination. Along with the strong discharge reactions, his clinical complaints decreased, his headaches lessened, and his motor and vision impairments improved. One month after starting ECCT use, he was able to visit C-Care with both his parents.
Although the prognosis with standard medical therapy is poor, high-grade glioma in the pineal position is a type of brain cancer case that shows high effectiveness with ECCT. Several advantageous factors include: Highly malignant cell types easily undergo lysis when exposed to the electric field generated by ECCT; for high-grade types, lysis typically occurs within 2-3 weeks. The pineal position is directly connected to the fourth ventricle, allowing lysed dead cells to flow and be easily discharged with the cerebrospinal fluid. The nature of high-grade cell lysis contains relatively low fat, making the flow process smoother. In these cases, the tumor mass generally lyses and almost disappears within 1-3 months of ECCT use.
Rafi’s brain MRI results after 6 months of use showed that the tumor mass, which was originally 3 cm, had shrunk and was no longer significant. There was a tendency for residual scar tissue, but it was not significant. This generally occurs for tumor masses that have lysed with ECCT.
Rafi continued to use the ECCT device for several years as a preventive measure, to prevent recurrence and spread. His general condition is relatively normal. His growth is also relatively normal. After stopping school for a few months during therapy, he re-entered school to complete elementary, then continued to junior high and high school. Currently, Rafi is 22 years old and is busy completing his studies at ITS. We hope Rafi remains healthy, successfully completes his studies, and continues to be successful in his career and life (WS).
