Retinoblastoma: Achieving Cure and Preserving life
September is tagged “Childhood Cancer Awareness Month” and today we will consider the most common eye cancer in children – Retinoblastoma.
Our guest today is Doctor Dupe Ademola-Popoola, a Consultant Ophthalmologist with the University of Ilorin. Thank you for joining us Ma.
September is “Childhood Cancer Awareness Month” and retinoblastoma is the leading intraocular cancer in children. What exactly is retinoblastoma, what causes it and how can it be detected?
Retinoblastoma is the commonest cancer of the eye in childhood. Now let me bring it closer so that you so you can understand better. The cameras that we are familiar with are developed aroundthe natural eye. And in the camera, typically we know about the film that allows the image to be formed. In the same way inside the eye, there is a part of eye called the retina. It’s in this retina that the cancer develops and that’s why it’s called retinoblastoma.
What causes retinoblastoma?
Retinoblastoma occurs as a result of problem in the gene, the building block of our chromosomes. Each one of us is unique because we are formed by genes in our chromosomes that are responsible for the colour of our eyes and so many other traits, even including our behaviours. If there’s a problem in one of these building blocks called genes, and, in this case, a gene that is responsible to protect against retinoblastoma, then the cancer occurs.
How can it be detected?
It is the most common cancer in children under the age of five years, it can occur even before a child is born. Though more common in children, it’s been reported in adults as well. In our center we’ve had a 9-year old with retinoblastoma. It occurs both in boys and girls in equal proportion, in one out of every 15,000 children born alive. Most of them don’t have it running in the family. It may affect one or both eyes. When it affects both eyes, usually these presents early in life such that before the child turns one year old, it would have been detected.
Can we find this?
Now, in most countries that are developed, the cancer is detected early when the parents notice early that the child’s eye are eye turning inward or outwards or there’s a whitish glow inside eye. Unfortunately, in our part of the world, most parents do not present early with it. So the way forward is for parents that observe their child’s eye not to be looking straight, or notice a whitish glow from the eye especially in the dark or when you take a photograph, to come to the hospital as, almost all children with retinoblastoma will present with one of these early in life.
What should parents and caregivers do if they suspect their child may have retinoblastoma? And is there a cure for it?
Now, let me explain that if the child has an abnormal whitish glow from the eye and nothing is done about it, it can then protrude and spreads to other parts of the body, which invariably we kill the young child. No parent wants that. In order to avoid seeing that the child dies from retinoblastoma every time, it will be important for parents to seek care as, actually, they are the first to notice it even in developed countries.
If you take a picture at a different point in the life of the child and you notice an unusual glow, what you should do is to quickly find out how you can access or consult your pediatrician or your well baby clinic during immunization, they will be able to direct you to a competent RB clinic. By the way, we have set up a hotline for retinoblastoma, which I will give you at the end of this session. If you call that line, wherever you may be in the country, they will be able to tell you the best nearby hospital where this can be managed in this country as it is today. So, ask your health worker for help. Don’t allow anybody to tell you that “it will go away”. One of the reasons why we must do this is because retinoblastoma is a disease that is life threatening. If you don’t do something about it, it’s going to become worse and subsequently take the life of the child.
What are some of the challenges of managing retinoblastoma in Africa?
The most important challenges in Africa can be summarized as being socio-economic; the most important of these is late presentation. Even when the disease is detected early, the parents do take the child too late to the hospital. That’s the most important problem facing retinoblastoma in Africa. I will give you a few statistics from our hospital. Only 14 out of 45 children i.e. less than one third of children who have been noticed to have the white glow at six months actually presented to the hospital within six months of noticing it.
Also, only 25 of 56 parents who noticed the disease in the first year took the decision in the first year it presented. We are saying that in our own country, the problem is that people notice it but present late. It’s so bad that the lag time is as high as 93 months.
How many years is that? Some people notice and then they leave the child till he/she has had the disease spread everywhere too. Then, the next problem is the disposition to religious beliefs as “it is not our portion”. So even when they go to the spiritual industry and are told this is what they need to do, they will say it’s not their portion. Treatment is what is required. In addition, sometimes there’s the problem of cost, because the cost of care is a little expensive. Every month, on average, families with a child with retinoblastoma will spend not less than N40,000-50,000 (Naira) for the first six months of this disease. So sometimes the money to spend for this disease becomes a problem. In the past, we used to have the problem of fake drugs but that has now improved, thanks to the initiative of the Federal Government along this line to make the drugs available. In some instances, you start treatment that should last for at least six months, the parents will take one or two doses and then default.
The other problem we have is healthcare related. This will include lack of correct information. Because this disease is highly specialized, some health workers give wrong information by telling the parents- “this is going to go away, allow the child to be 10 months or one year old before you go to the hospital”. Also, it is a big problem because it’s such an expensive disease to manage sometime we have to use laser, cryotherapy, surgery etc. These are not available everywhere. Specialized centers are available in the country to manage this. Those are some of the problems we have in the country and in Africa, in general, with respect to managing retinoblastoma.
What is your advice to parents, the general public and health care workers as regards their roles in the fight against retinoblastoma?
Thank you. Retinoblastoma is a disease that is curable. That’s the first thing I want to tell everybody. In developed countries, almost every child that develops retinoblastoma somehow beats the disease. They beat the disease and live because of early presentation. So my advice to parents is that as soon as you notice this disease, do not allow yourself to be told that the child will outgrow it. Insist on getting care from specialized centers. I think it is an appropriate time to give the hotline number: 07039000464. So, if you think that your child has retinoblastoma and you don’t know where to go, call one of these two phone numbers we are giving you. Our staff will give you information on the center that is closest to you where this can be promptly seen. This is a disease that must be diagnosed within two weeks that you notice the symptoms, like we have mentioned, such as the eyes turning aside or there’s a whitish glow. There are ophthalmologists at the Teaching Hospitals, National Eye Centre, and some Federal Medical Centers that will do the best they can to help you and they know the closest centre for referral. So, do not allow anybody to tell you not to worry, please worry now so that you will not worry in the future and, when you get to the center, agree with the treatment options offered. If you need to seek second opinion that is acceptable. The center will tell you where to go. All these should be done within two weeks. Members of the public should ensure to refer a child that you notice the eyes do not look right. Please tell them that they can use the hotline so they will be referred to a proper Eye Clinic. Also, we need well-meaning Nigerians to provide support so that every child can have care when they are diagnosed with retinoblastoma. The Eye Centers need equipment to work with. If you’re also able to support that, we will appreciate it. Let’s turn around the story of retinoblastoma in Nigeria. Let us leave the current situation in which about 50%, i.e. 5 out of every 10 children with the disease will die. Let’s make it that, at least, 9 out of every 10 will survive the disease, will retain their eyes to see and, live a life that is full. Thank you so much.