By Dr. Irfan Faraz

Retinoblastoma is a type of eye cancer that originates in the retina, the delicate lining found at the back of the eye. Typically, this cancer affects children, although it is exceptionally rare for it to develop in adults. It is the most frequently diagnosed cancer affecting children’s eyes and can appear in one or both eyes.

If caught early, retinoblastoma is highly treatable, with over 90% of affected children being cured. However, ongoing monitoring and follow-up care are crucial components of cancer management. Children who have had retinoblastoma, as well as their siblings who may be at risk of developing the condition, will be closely monitored. The specific type of follow-up care provided will depend on whether or not the child has the inherited form of retinoblastoma, known as the RB1 mutation. Typically, a team of healthcare professionals, including cancer specialists, ophthalmologists, and primary care physicians, will work with the child and their family to determine the most appropriate follow-up care.

Long-term follow-up care is essential to ensure that the cancer does not return (recur) and to identify and manage any potential late effects of treatment. Individuals who have had childhood cancer are often enrolled in aftercare programs that provide ongoing monitoring and support throughout their lives.

Keeping a Close Watch on Recurrence

As part of follow-up care for retinoblastoma, a child may need to undergo regular physical exams, medical tests, or both. The goal of these check-ups is to monitor the child’s recovery and ensure that the cancer does not return. Typically, a child who has been cancer-free for 2 to 4 years after treatment is considered cured, and follow-up visits shift focus to improving the child’s overall well-being. Pediatric oncologists may address developmental and emotional issues and work to enhance the child’s quality of life.

The primary objective of follow-up care for retinoblastoma is to check for a recurrence, which occurs when cancer cells return after treatment. Recurrence can happen because small groups of cancer cells may remain undetected in the body, and over time, they can grow and cause symptoms or show up on medical tests.

During follow-up visits, a doctor who is familiar with the child’s medical history can provide personalized information about the risk of recurrence. The child’s doctor will ask specific questions about the child’s health and may recommend blood tests or imaging tests to monitor for any signs of cancer. The frequency and type of testing will depend on various factors, such as the stage and type of cancer, the treatments used, and the child’s overall health status.

Manage Late and Long-Term Side Effects of Treatment

In some cases, side effects of cancer treatment can persist beyond the active treatment phase, referred to as long-term side effects. Additionally, late effects may emerge months or even years after treatment ends. Late effects can affect various parts of the body and include physical issues like heart and lung problems and secondary cancers, as well as emotional difficulties such as anxiety, depression, memory problems, and difficulties with attention and learning.

The doctor will determine the necessary evaluations to check for long-term effects based on the type of treatment the child received and whether the child has the genetic form of retinoblastoma. This may involve imaging studies like CT scans or MRIs, as well as blood tests. Counseling may also be provided to children who have an increased risk of developing additional tumors later in life, especially those with retinoblastoma in each eye or a family history of the disease.

To monitor the child’s recovery and detect any secondary cancers at an early stage, yearly visits to specialized ophthalmologic and medical oncologists are necessary. Follow-up care is also necessary to address any developmental or emotional concerns that arise from the child’s cancer and treatment experience.

Final Say

During follow-up appointments, various assessments and tests are typically done to monitor the effects of cancer and its treatment, the response to treatment, and the child’s overall progress after active treatment. These may include routine check-ups, diagnostic imaging scans, and other medical tests.

In addition to medical assessments, the ophthalmology team will also work to protect and enhance a child’s vision. For children who have experienced vision or hearing loss, rehabilitative care and support may be necessary. The follow-up assessments will determine what support and care are needed to help the child succeed and thrive.

(The author is a Senior Retina Surgeon, ROP Management, Deccan college of medical sciences, Hyderabad. The article is for informational purposes only. Please consult medical experts and health professionals before starting any therapy, medication and/or remedy. Views expressed are personal and do not reflect the official position or policy of the

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