Orbital Fungating Mass as a Rare Manifestation of Retinoblastoma: A Case Study in Palliative Care

Introduction

Different types of tumors can develop from the structures within the orbit. Retinoblastoma is a tumor that originates in the retina, specifically impacting the precursor cells of the retinal neuroepithelium. It is the most frequent primary malignant tumor found inside the eye in children. This condition occurs exclusively in young children, with the majority of cases diagnosed before the age of 5 [1].

Retinoblastoma can occur sporadically or as a result of a germline mutation that leads to the inactivation of the RB1 tumor suppressor gene, which is typically inherited. Primary orbital retinoblastoma is identified as an extraocular condition that results from the direct spread of intraocular retinoblastoma. This form is rarely seen in developed countries, largely due to timely diagnosis and effective treatment. In more advanced or untreated cases, extensive tumor growth outside the eye can occasionally lead to the development of a large, protruding orbital mass, as observed in this case. Diagnosis is confirmed through histopathological analysis. For patients with extraocular extension of retinoblastoma, imaging studies are essential to accurately assess the tumor’s size and spread [1].

In patients with retinoblastoma, treatment typically includes chemotherapy with intravenous agents like the triple-drug combination of vincristine, etoposide, and carboplatin (VEC). This approach is referred to as chemoreduction. Chemoreduction, which involves the use of systemic chemotherapy to decrease tumor size and enhance the effectiveness of localized treatment, is being used more frequently in the management of retinoblastoma. This approach allows many patients with bilateral retinoblastoma to avoid the need for external beam radiotherapy or enucleation. Its antitumor activity depends on both the dosage and the treatment schedule [2].

Intravenous chemotherapy usually consists of 2, 3, or 4 chemotherapeutic agents administered monthly through a central or peripheral catheter for a total of 6–9 consecutive cycles. The most frequently used regimen is VEC. When neurotoxicity is a concern, vincristine can be substituted with cyclophosphamide. However, based on prior reports, cyclophosphamide is more likely to induce myelosuppression and hemorrhagic cystitis. Given the reduction in tumor size, intravenous chemotherapy is sometimes referred to as chemoreduction [3].

The Target Product Profile development group found that Burkitt lymphoma and retinoblastoma are not common indications for the clinical use of oral etoposide. Therefore, they recommended that the use of oral etoposide should not be limited to these 2 conditions, but instead be expanded for palliative purposes in other pediatric malignancies that may also benefit from oral or alternative etoposide formulations [4]. Oral administration may offer enhanced efficacy due to more favorable pharmacokinetic properties. Since oral etoposide concentrations as low as 10 nmol/L have shown cytotoxic effects in vitro, extended daily oral dosing (50 mg/m2) or standard intravenous administration may be sufficient to reach therapeutic levels in the cerebrospinal fluid (CSF) and potentially in the retina. Oral etoposide has demonstrated effectiveness in treating other pediatric cancers. It is easy to administer and is generally associated with minimal acute toxicity [2].

Herein, we present a case involving a rare form of orbital retinoblastoma with dural metastasis, identified at the time of diagnosis in a female patient aged 1 year and 10 months, with aims to provide insight into patients who experienced loss to follow-up during treatment. What distinguishes this patient from typical cases of orbital retinoblastoma is that both eyes were affected by orbital retinoblastoma with a very large tumor diameter in both eyes, accompanied by dural metastasis.

The novelty of this patient’s disease pattern includes the therapeutic sequencing employed, in which multiple treatment modalities were administered to prolong survival. Multiple treatment modalities were employed for this patient, including chemotherapy using a different regimen and radiotherapy. Social determinants also played a significant role in the disease course. Another important novelty is that the patient was managed under a palliative approach, including long-term palliation. Unlike most similar cases, in which patients typically do not survive beyond 1 year, this patient achieved prolonged survival through comprehensive palliative interventions focused on maximizing comfort and quality of life toward the end of life. It is hoped that, in the future, efforts can be strengthened to prevent further instances of loss to follow-up, to reduce the risk of patients presenting with advanced stages, who may only be eligible to receive palliative care. This report also highlights the importance of a multidisciplinary approach that focuses not on cure, but on improving palliative care outcomes and enhancing the child’s quality of life.

Case Report

The patient was an unvaccinated girl from Indonesia who first came to Cicendo Eye Hospital at 1 year and 10 months of age. She presented for the first time with a white pupil in the right eye (Figure 1). She underwent an ultrasound examination, which revealed bilateral intraocular retinoblastoma Group E with phthisis bulbi in the left eye and retinal detachment in the right eye (Figure 2). The patient subsequently underwent an Evaluation Under Anesthesia (EUA) and Retinal Camera (RetCam), which revealed bilateral intraocular retinoblastoma Group E with phthisis bulbi in the left eye and secondary glaucoma in the right eye, accompanied by neovascularization of the iris (Figure 3). Bone marrow aspiration (BMA) and lumbar tap were within normal limits. Bilateral intraocular retinoblastoma was identified on computed tomography (CT) imaging. The patient was advised to undergo enucleation, but the parents refused. The patient was then treated directly with standard-dose intravenous VEC chemotherapy to reduce tumor mass. But after the first cycle of chemotherapy, the patient was lost to follow-up for 1 year and 2 months.

At age 3 years old, the patient came again with complaints of enlarged lumps in both eyes, cauliflower-like masses, with masses measuring approximately 9×10×6 cm in the right eye and 7×7×4 cm in the left eye, intermittent fever accompanied by pain, and a lump on the left cheek with masses measuring approximately 9×6×2 cm (Figure 4). The patient consistently maintained a head-down posture due to the excessive weight of the orbital mass, which significantly restricted mobility. Neurological status could not be assessed, the pain score was 5, and the patient was unable to ambulate. The Z-score weight-for-age was −3.13, height-for-age was −3.15, and weight-for-height was −2.14, indicating moderate malnutrition and short stature. The patient underwent a CT scan as it is more readily available than an MRI to confirm the presence of metastasis. The results indicated orbital retinoblastoma in both eyes with dural metastasis (Figure 5). An isodense lesion with hypodense components and calcifications was observed, with well-defined margins and irregular contours, measuring approximately 4.56×6.67×6.63 cm, appearing to originate from the right ocular globe, and another lesion measuring approximately 5.79×7.82×6.67 cm, appearing to originate from the left ocular globe. The lesions extended into the extraconal space and beyond the bilateral orbital cavities, obliterating both lacrimal glands. On the left side, the lesions also involved the left temporalis muscle and left zygomatic muscle, extending inferiorly to obliterate the left longissimus capitis, left obliquus capitis, and left splenius capitis muscles. Post-contrast imaging demonstrated moderate, inhomogeneous enhancement. Additionally, a well-circumscribed isodense lesion with relatively regular margins, measuring approximately 2.31×2.62×2.82 cm, was identified along the concavity of the left sphenoid wing, extending to the left superior orbital apex and left parasellar region. A similar lesion measuring approximately 1.48×4.21×2.62 cm was noted in the left parietal region. Both lesions showed moderate, inhomogeneous enhancement following contrast administration. The bilateral optic nerves appeared thickened, measuring approximately 6.3 mm on the right and 6.2 mm on the left. At that time, the patient could not undergo BMA and lumbar tap due to her clinical condition. The anesthesiologist was concerned about airway compromise during the procedure. The patient was diagnosed with orbital retinoblastoma International Retinoblastoma Staging System (IRSS) stage IV with dural metastasis (which had occurred during loss to follow-up). The clinical tumor, node, metastasis (cTNM) stage was cT4b, cN1, cM1b, and HX. The patient was referred to a nutritionist, psychologist, and child counselor, as well as to an otorhinolaryngology (ENT) specialist. The results of the hearing screening indicated that the patient’s auditory function was within normal limits.

The treatment goal was no longer curative but instead focused on palliative care. With the parents’ consent to palliative care, the patient received palliative therapy consisting of standard-dose (6 cycles) intravenous VEC chemotherapy. The first cycle was administered on 30 October 2024, and the sixth cycle on 21 February 2025, with an average interval of 23 days between cycles. The cumulative doses administered were as follows: intravenous vincristine 4.5 mg, intravenous etoposide 900 mg, and intravenous carboplatin 1794 mg. BMA indicated hypoplasia of the bone marrow, but lumbar tap was within normal limits. Oral etoposide, administered at 50 mg/m2 per day for 21 days, after intravenous VEC chemotherapy, was used as the maintenance therapy, with the intention of preventing recurrence of proptosis. During the chemotherapy treatment, the patient was never hospitalized as systemic abnormalities did not occur. The patient only received a platelet transfusion of 2 units during the BMA and lumbar puncture procedures due to thrombocytopenia.

The patient completed intravenous VEC chemotherapy at age 3 years and 4 months old. The patient underwent an MRI for evaluation, which revealed that the masses had shrunk (Figure 6). The patient completed the oral etoposide course at age 3 years and 5 months old, and her condition had greatly improved. Her right eye condition had improved substantially and the lump on the left cheek had shrunk completely, with no visible mass remaining. The left eye had shrunk in size but still exhibited a small residual protruding mass, measuring approximately 2×2×0.5 cm (Figure 7). No neurological deficits were observed, the pain score was 0, and the patient was able to ambulate. The Z-score weight-for-age was −1.80, height-for-age was −1.94, and weight-for-height was −1.10, indicating normal nutritional status. Evaluation through repeat BMA yielded a result within normal limits. The BMA results from the initial presentation to the recent evaluation are presented in a table to allow comparison of the patient’s data across follow-up visits (Table 1).

Six weeks after completion of oral etoposide, the patient complained of pain in the leg, the pain score was 4. The patient was unable to describe exactly where the leg lesions were located because the leg felt painful. Three lumps were found on the left temporal region, with diameters ranging from the smallest at 2×1×0.5 cm to the largest at 2×3×1 cm, all of which were fixed in place. In addition, there was a recurrence of the left orbital mass measuring approximately 4.5×4×2 cm (Figure 8). After disease progression manifested as recurrent proptosis, which was suspected to represent metastatic disease at age 3 years and 6 months, an alternative regimen was initiated. The patient is receiving VEC alternating with VDC in each chemotherapy cycle, in combination with palliative radiotherapy.

The patient, who at the time of this writing was 4 years old, had received 5 cycles of chemotherapy with cumulative doses administered as follows: intravenous vincristine 3.81, intravenous etoposide 612 mg, intravenous carboplatin 1218 mg IV, intravenous doxorubicin 23 mg, intravenous cyclophosphamide 250 mg, and 10 sessions of palliative radiotherapy. The patient’s condition was stable at the time of writing this report, with no neurological deficits observed and no pain in the legs. Her pain score was 0. The 3 lumps previously present in the left temporal region have resolved. The recurrent left orbital mass had decreased in size, although a small residual protrusion remained within the eyelid, measuring approximately 2×2×1 cm (Figure 9). To summarize the patient’s clinical history and management milestones, we have added a figure illustrating a timeline flowchart (Figure 10).

Discussion

At the time of the patient’s first presentation to Cicendo Eye Hospital at 1 year and 10 months of age, the diagnosis of bilateral intraocular retinoblastoma Group E had been established, with phthisis bulbi in the left eye and retinal detachment in the right eye. This condition could already be classified as a late presentation. Notably, the patient had not received immunizations, which may have contributed as a compounding factor that could potentially worsen the clinical condition: a study conducted in Germany in 2021 reported that childhood vaccination is associated with a reduced risk of developing childhood leukemia [5]. Similarly, a study conducted in the USA in 2024 reviewed 3 papers addressing potential causes of childhood cancer, categorized into Child Factors, Parental and Pregnancy Factors, and Environmental Factors. In the section discussing child factors, it was highlighted that childhood vaccination against carcinogenic viruses is linked to a lower risk of several cancers, although evidence supporting broader protective effects of other childhood vaccinations remains less conclusive [6]. The patient had undergone various diagnostic evaluations, including ultrasound examination, EUA with RetCam, CT imaging, BMA, and lumbar tap. The patient had received 1 cycle of intravenous VEC chemotherapy because the parents refused enucleation, which constituted an early barrier to definitive treatment.

The age at which patients are diagnosed with retinoblastoma supports Knudson’s hypothesis: bilaterally affected individuals with heritable disease experience a single rate-limiting event and typically present at a median age of about 12 months, whereas unilaterally affected individuals with non-heritable disease require 2 rate-limiting events, resulting in a later median age at diagnosis of about 24 months [7]. In contrast, the patient in this case first presented at 1 year and 10 months of age, already in an advanced stage corresponding to bilateral Group E. This suggests that the patient was likely affected by retinoblastoma before 12 months of age, despite the delayed clinical presentation.

The International Classification of Intraocular Retinoblastoma (IIRC) classifies eyes as A through E, with Group E representing the most advanced stage. However, subsequent modifications have produced an alternative version of the IIRC that differs substantially, such that severely affected eyes may be grouped with those less severely affected. The tumor, node, metastasis (TNM) cancer staging system, which categorizes all malignancies based on the primary tumor (T), lymph node extension (N), and distant metastasis (M), is applied somewhat differently in retinoblastoma. In cases of extraocular retinoblastoma, and in collaboration with the group that developed the original IIRC, retinoblastoma specialists established the IRSS, which focuses on overall disease staging and is distinct from the standard TNM classification system [7]. In the present case, the patient exhibited an advanced stage of disease at the initial presentation. Advanced-stage disease at the time of diagnosis is more frequently observed in low- and middle-income countries, even after adjusting for age [8]. Five-year survival rates exceed 95% in high-income countries, but are often below 40% in low- and middle-income countries [9].

The patient did not come for follow-up visits for 1 year and 2 months. The patient’s family faced significant financial hardship and was unable to afford the national health insurance scheme, and difficulty attending follow-up and continuing treatment at the hospital was augmented by the long distance between their home and the hospital, resulting in a delay in receiving timely and appropriate therapy. During this period, the disease advanced to IRSS stage IV bilateral orbital retinoblastoma with dural metastasis, with cTNM stage of cT4b, cN1, cM1b, and HX. At this point, the therapeutic goal shifted from curative intent to palliative care. Clinical manifestations of the patient included progressive orbital swelling in both eyes, cauliflower-like masses with masses measuring approximately 9×10×6 cm in the right eye and 7×7×4 cm in the left eye, intermittent fever associated with pain, and a palpable mass on the left cheek with masses measuring approximately 9×6×2 cm, with an unassessable neurological status. The malnutrition criteria for this patient were based on the Z-score principle, which indicates how many standard deviations a child’s measurements deviate from the WHO growth standards, as calculated using the PED(Z) application. The Z-score weight-for-age was −3.13, height-for-age was −3.15, and weight-for-height was −2.14, indicating moderate malnutrition and short stature. Even in cases of advanced and untreated retinoblastoma, extensive extraocular tumor extension resulting in the type of giant fungating orbital mass seen in our patient is exceedingly rare, and cases in which the mass is accompanied by dural metastasis are even rarer [1]. To the best of our knowledge, no cases with confirmed dural metastasis have ever been identified. There are reports of retinoblastoma with intracranial metastasis, nervous system metastasis, and lesions involving the optic chiasm [10–12]. Nonetheless, in our hospital, we have 2 additional patients presenting with dural metastasis, both of whom are 2-year-old female patients.

Indonesia, with a population of approximately 280 million people and a median age of 31.2 years, has an age distribution in which 24% of the population is between 0 and 14 years, while the majority (68%) falls within the 15- to 64-year age group [13]. Between January 2011 and December 2016, delays in the diagnosis of retinoblastoma ranged from 0 to 60 months, with a median of 12 months. Overall, 67% of patients experienced a diagnostic delay for retinoblastoma of more than 6 months, and 56% presented with advanced-stage disease [9].

The oncology team at our institution discussed the case and concluded that enucleation was no longer anatomically feasible at the time of the patient’s second presentation, as there was no patient safety margin due to obstruction of the airway by the mass. In the palliative care setting, enucleation is generally not performed unless it serves a specific purpose aimed at improving the patient’s condition or quality of life. A biopsy of the cheek mass was not performed because, after a multidisciplinary team discussion at our hospital, it was concluded that the cheek mass represented a manifestation of the retinoblastoma itself. Therefore, it was most likely a metastatic lesion.

The patient is receiving palliative therapy with the consent of the parents. Implementation of palliative therapy for the patient is aimed at providing comfort and alleviating symptoms in the patient, while maintaining and improving her quality of life through nutritional support. Palliative therapy was administered in accordance with the Indonesian guidelines for retinoblastoma, consisting of standard-dose (6 cycles) intravenous VEC chemotherapy [14]. A study conducted in Iraq in 2024 reported that patients with advanced retinoblastoma elected to undergo medical management with systemic chemotherapy rather than enucleation or exenteration, which is consistent with the management approach in our case [15]. Oral etoposide was introduced as a maintenance therapy, with the intention of preventing recurrence of proptosis. This approach is supported by evidence demonstrating the efficacy of oral etoposide in patients with relapsed medulloblastoma and neuroblastoma following prior intravenous etoposide therapy [2]. Carboplatin is highly effective in the treatment of retinoblastoma and is the only drug that has been successfully administered as systemic monochemotherapy, but we were unable to provide oral carboplatin because it is not available in Indonesia. Oral etoposide was subsequently initiated at a dose of 50 mg/m2 and administered for 21 consecutive days [2]. A similar study conducted in England in 2021 reported the use of oral etoposide in pediatric and young adult cancers as an alternative palliative treatment option [16]. During the chemotherapy treatment, the patient remained in an optimal condition and was never hospitalized for any systemic abnormalities. The patient only received a platelet transfusion of 2 units during the BMA and lumbar puncture procedures due to thrombocytopenia.

After completing oral etoposide, the mass in the patient’s right eye and the lump in the left cheek has shrunk completely, with no visible mass remaining, while the left eye mass had shrunk in size but still exhibited a small residual protruding mass, measuring approximately 2×2×0.5 cm, and the patient remained in good condition during the observation period with no neurological deficits. The Z-score weight-for-age was −1.80, height-for-age was −1.94, and weight-for-height was −1.10, indicating normal nutritional status. However, 6 weeks later, the patient reported leg pain with a score of 4, but was unable to describe exactly where the leg lesions were located because the leg felt painful. Clinical examination revealed 3 palpable lumps in the left temporal region with diameters ranging from the smallest at 2×1×0.5 cm to the largest at 2×3×1 cm, along with recurrence of the left orbital mass measuring approximately 4.5×4×2 cm, all of which were fixed in place. Consequently, the treatment regimen was escalated to include alternating cycles of intravenous VEC and VDC chemotherapy for palliative therapy, combined with palliative radiotherapy. The VDC regimen may be administered as an alternative therapy for patients with advanced-stage retinoblastoma, with chemotherapy cycles scheduled at intervals of 21–28 days following the initiation of the preceding cycle [17].

In several countries, intensified therapy for advanced-stage retinoblastoma is administered using a combination of VEC alternating with VDC, as also implemented in Guatemala, as a potentially more effective treatment option for advanced-stage retinoblastoma [18]. A study conducted in Germany combined the VEC regimen with the addition of cyclophosphamide and a lower dose of carboplatin compared with the standard VEC regimen, while the cumulative doses of vincristine and etoposide remained the same in both regimens. Carboplatin is highly effective in the treatment of retinoblastoma and is the only drug that has been successfully administered as systemic monochemotherapy. Event-free eye survival outcomes may be improved with higher doses of carboplatin in the VEC regimen [19].

After the period of loss to follow-up, the major factor contributing to orbital disease progression was the patient’s inability to attend scheduled follow-up visits. Currently, the feasibility of prolonged palliative care has considerably improved, as patients residing in shelters located near the hospital have access to adequate caregiver support. This arrangement facilitates regular follow-up and is expected to prevent future loss to follow-up. For symptom control, after completion of chemotherapy and oral etoposide, management should not be abruptly discontinued; instead, the patient requires regular follow-up for ongoing observation and periodic evaluation. Radiographic strategic monitoring is planned through periodic magnetic resonance imaging (MRI). If the patient were to be lost to follow-up again, potential adverse outcomes that must be anticipated include extensive orbital extension with a markedly enlarged mass, lymph node enlargement, and the development of additional systemic symptoms.

The treatment of retinoblastoma is complex and requires a multidisciplinary team of collaborators, including pediatric oncologists, ophthalmologists, diagnostic and interventional radiologists, radiation oncologists, ocular pathologists, and geneticists [20]. At our hospital, an integrated oncology team is already in place. After the second presentation, at the age of 3 years in 2024, the patient was referred to the hospital’s psychosocial palliative care team, which includes a nutritionist, psychologist, and child counselor, to prevent further loss to follow-up. This case further encouraged the formal establishment of a dedicated palliative care team; consequently, in April 2025, an official hospital palliative and pain management team was established, supported by multidisciplinary team collaboration, additional oncology nurses, pharmacists, nutritionists, psychologists, and pediatric counselors, enabling comprehensive and well-coordinated palliative care for patients. Additionally, psychosocial support was provided not only to the patient but also to the patient’s parents. Both the patient and the family experienced increased comfort and an improved quality of life, and the family developed confidence that the treatment would proceed smoothly with support from the multidisciplinary team. This integrated approach is essential to optimizing palliative interventions and enhancing the patient’s quality of life.

At the time of writing this report, after the patient returned following a period of loss to follow-up and then received various treatments over the course of a year, the patient remains under chemotherapy and palliative radiotherapy with close monitoring. The patient’s current condition is considerably more stable compared with her condition 1 year ago. No neurological deficits were observed, and no pain in the legs; the pain score was 0. The 3 lumps previously present in the left temporal region have resolved. The recurrent left orbital mass has decreased in size, although a small residual protrusion remains within the eyelid, measuring approximately 2×2×1 cm.

Communication with families of patients with malignancies requires a different approach from communication with families of patients with other conditions, as it is essential to explain the natural course of the disease to the parents. If the parents are unwilling to follow the recommended management plan, it is important to clearly communicate that retinoblastoma not only leads to loss of vision but also poses a life-threatening risk if left untreated. Strategies to prevent loss to follow-up may include recording 2 contact numbers from the patient’s family to facilitate follow-up communication, as well as providing family education through paper-based materials containing information about the retinoblastoma group and disease staging. In addition, collaboration with primary and secondary health care facilities is essential to strengthen early cancer screening and the referral system. Ideally, the development of a digital reminder system that integrates the electronic medical records with the hospital’s patient registration system, supported by the IT department, could help bridge communication and improve continuity of care for pediatric oncology patients, particularly those with retinoblastoma.

Primary healthcare services in regional areas can perform examinations or screenings for children at risk of developing ocular cancers, which can serve as an early step for timely diagnosis and appropriate management. Therefore, both primary and secondary healthcare providers must be familiar with the basic signs and risk factors associated with pediatric ocular cancers. A well-informed referral system ensures that patients are identified early, referred promptly, and receive appropriate treatment without unnecessary delays. Patients presenting with symptoms suggestive of retinoblastoma should be quickly referred to a higher-level hospital for further evaluation and management. In cases where patients face barriers related to economic, geographic, or other social factors, coordination with local authorities or community health workers is recommended to prevent loss to follow-up.

The integration of palliative care services by trained hospital personnel should be established from the outset, emphasizing that palliative care is not intended for cure, but rather to provide comfort and improve the quality of life for both patients and their families. It is important to inform all clinicians that extraocular or orbital retinoblastoma can progress to a larger tumor, potentially leading to intracranial metastasis, as well as causing respiratory compromise and difficulty with oral intake in affected patients.

Cases of late presentation highlight the urgent need for a national screening program to support early detection strategies for retinoblastoma. This initiative can be pursued through both national and international collaboration to ensure timely access to effective treatment for children affected by retinoblastoma in Indonesia. This case highlights the importance of comprehensive care for every child with cancer, emphasizing that our role is not only to cure but also to care. We have implemented interventions to increase awareness among healthcare professionals in primary and secondary care facilities; however, these efforts have so far been limited to a single province. Ideally, this program should be expanded nationwide in Indonesia, targeting not only healthcare providers but also students and families. The goal would be to enhance knowledge, facilitate early screening, and improve recognition of symptoms and signs of retinoblastoma and other childhood cancers.

This manuscript has several limitations, including the absence of enucleation, which precluded histological confirmation, and the inability to perform a lumbar puncture at the time of recurrence. In addition, the initial evaluation relied on CT rather than MRI. Access to radiotherapy evolved over the course of treatment, necessitating referral to another hospital. These factors, together with the single-center setting in a low- and middle-income country, may introduce reporting bias.

Conclusions

Patients who are lost to follow-up are typically already in an advanced stage of disease and are often at increased risk of receiving delayed or inadequate medical interventions. As a result, the primary and realistic goal was to achieve prolonged survival; therefore, palliative therapy was directed toward patients with similar objectives, aiming not only to extend life but also to ensure comfort and pain control during the end-of-life period. From a health system perspective, preventing delayed diagnosis, which can lead to advanced disease, requires robust follow-up systems, patient education, community health outreach, and digital reminder tools. In addition, the implementation of a national early screening and detection program for young children is essential to enable early detection of retinoblastoma. Such efforts require coordinated national and international collaboration to ensure timely access to effective treatment for children affected by retinoblastoma in Indonesia.