World Retinoblastoma Awareness Week 2024

A conversation with Dr Haleema Saeed (Consultant Paediatric Oncologist, SKMCH&RC, Lahore)

What is retinoblastoma and what are some common signs and symptoms?

Retinoblastoma is the most common eye cancer in children. It usually presents in the first 3 to 5 years of life.  It is curable if picked up early and treated appropriately.

The earliest sign of retinoblastoma is a white reflex in the pupil noticed by parents on photographs or when looking at their child in the light. Children with retinoblastoma can develop a deviation of the eye to one side or begin to lose vision in an eye. Sometimes, it can effect both eyes.

“The earliest sign of retinoblastoma is a white reflex in the pupil”

Can you tell us why we need to mark retinoblastoma week?

We are celebrating World Retinoblastoma Week from 12-18 May 2024 to increase awareness about this cancer in children.

Early detection if key in improving survival for this cancer so we are celebrating this week to increase awareness in the general public as well at health care provider about the signs and symptoms of this cancer so it can be detected early and referred rapidly to specialized centers of treatment.

Can retinoblastoma be inherited?

Some cases of retinoblastoma are hereditary. So, if one family member is effected it is very important to get regular eye examination for all children under 5-6 years of age.

In your view, what are some of the challenges in Pakistan related to fighting this disease?

Retinoblastoma is an unfortunate example of global disparity. A child born in a high income country with a robust health care and referral system is almost guaranteed to be a survivor while hundreds of children die each year from the same disorder in countries like Pakistan.

The biggest challenge we face is late diagnosis and slow referral system because of which it sometimes takes a long time for patient to be diagnosed and by that time the cancer is advanced and difficult to treat.

The treatment can sometimes involve removal of the eye (enucleation) to save the patient’s life parents often resist this option due to the social stigma attached to such an operation and resort to alternate methods specially faith healers that further delays their treatment.

These patients require treatment in specialized centers that places a huge burden on patients who have to travel long distances and live away from home. I had a patient form North Waziristan who develop swelling in his eye that the family was very concerned about in winter months but they had to wait untill the weather improved and roads opened before travelling to Lahore.

Is there work being done to address these issues?

In 2018 the World Health Organization (WHO) launched a global initiative to improve survival of childhood cancer to at least 60% by 2030 called the Global Initiative for Childhood Cancer (GICC). Retinoblastoma is one of the cancers being targeted in this initiative. Pakistan has been selected to be one of the target countries for this initiative.

We are actively working to provide uniform and equitable care for retinoblastoma across the country in Pakistan. Co-ordinated efforts of the Pakistan Society of Pediatric Oncology (PSPO) and Ophthalmological Society of Pakistan along with support from the WHO GICC project and St. Jude Children’s Hospital in the USA has resulted in the development of a national protocol in Pakistan to treat all children with retinoblastoma under the same guidelines. This protocol is active at eight centers across Pakistan.

There are multiple examples across the world where awareness campaigns for the detection of white reflex in children have led to timely diagnosis and treatment of retinoblastoma. We are trying to increase awareness in the public as well as primary care providers about early signs of retinoblastoma like the white reflex that is most often noticed by parents on digital photographs. I frequently see patients who present with pain in swelling in the eye and when the parents go back and look at old photographs they find that a white reflex was present several months ago.

In time we would like to develop a system of regular screening will all hospital and vaccination visits for children  during first years of life for early detection.

Can you comment on the treatment of retinoblastoma?

They say it takes a village to raise a child. That is also true for children with retinoblastoma. It is a complex disorder that requires close coordination between cancer specialists, specialized children’s eye surgeons, specialized nursing, counsellors, radiation oncologist, radiologists, pathologists, and support groups to provide the care needed for these children. This can only be provided at specialised centres, such as Shaukat Khanum Memorial Cancer Hospital and Research Centre where comprehensive treatment is available under one roof.

The treatment can vary from minimal focal treatment in early to intensive chemotherapy, surgery and radiation based on the stage of the disease.

What happens if an eye is removed?

Sometimes, we need to do surgery to remove an non seeing cancer effected eye to save the child’s life. In this case, prosthesis is placed that matches the other eye and if surgery is done by and expert surgeon with placement of implant the eye also move together. Children are able to see with the other eye. I have many patients who are now grown up and are excelling in school and other activities with just one seeing eye.

What can we do as a community to improve survival for this cancer?

The most important step to increase survival for these children is to suspect this cancer early by vigilant review of digital photographs and then refer early to specialized centers for treatment.

Let’s all play our part by sharing the message of the white pupil as a red flag for eye cancer to save lives.