22 Scarey Retinoblastoma Statistics

Cancer is never a positive topic to discuss. Although treatment options today are dramatically better than even a decade ago, the unfortunate fact about cancer is that it claims millions of lives every year. Even more tragic is the fact that children can get cancer as well. Some cancers like Retinoblastoma are quite rare, so the odds of having a child diagnosed with it are very small, but for those families that do get this diagnosis, the words “You have cancer” can be a punch to the gut.

Statistics on Retinoblastoma

1. Only about 200 to 300 children are diagnosed with retinoblastoma each year in the United States.
2. It is more common in infants and very young children than in older children.
3. The average age of children when they are diagnosed is 2 and rarely occurs in children once they reach the age of six.
4. 75% of children with retinoblastoma have a tumor in only one eye.
5. Retinoblastoma occurs about equally in boys and girls and in different races and ethnicities.
6. This cancer also occurs equally in the right or left eye.
7. If caught early, more than 90% of children with retinoblastoma can be cured.
8. Almost 80% of children with retinoblastoma are diagnosed before 3 years of age.
9. In the UK, bilateral cases usually present within 14–16 months, while diagnosis of unilateral cases peaks between 24 and 30 months.
10. The total number of cases in the UK: 40-50 annually.
11. Retinoblastoma presents with cumulative lifetime incidence rate of 1 incident per 18,000-30,000.
12. Developing countries have a somewhat higher incidence rate of retinoblastoma and this is thought to be because of higher infection rates of HPV.
13. Retinoblastoma makes up 3% of all cancers diagnosed in children before the age of 15.
14. The five-year survival rate for children with retinoblastoma is 99%.
15. Retinoblastoma develops from a single affected cell in the retina and it is invisible at its inception.
16. 90% of children will have normal vision in at least one eye after treatment.
17. Only 15% of retinoblastoma cases are in one eye and hereditary.
18. Retinoblastoma is a world problem affecting approximately 8,200 children each year.
19. It is estimated that 92% of the children that have retinoblastoma have only minimal access to the optimal levels of care that they need.
20. If only the developing world statistics were used to track retinoblastoma, it would only have a survival rate of 13%.
21. About 70% of children who have treatment for retinoblastoma and are able to save their eyes have 20/40 vision at their 5 year check-up.
22. One recommendation is that children with the heritable form of retinoblastoma should be screened using magnetic resonance neuroimaging, or CT scans, every six months after being diagnosed until they reach the age of 5.

Chance of Survival

There is some good news. The odds of a child surviving Retinoblastoma are extremely good, even though it is a rapidly developing cancer. Early detection is the key to a successful treatment, as it is with any other form of cancer. Retinoblastoma develops within the cells of the retina, creating a malignant tumor. It’s the most common malignant tumor in children that affects the eye.

What some parents may not know about Retinoblastoma is that it can actually be an inherited disease. Families that have a history of the disease, especially if a child’s parent had the disease, have a 45% chance of passing the cancer on to their children. The most common symptom that can be seen with this cancer is an abnormal appearance around the eye or while viewed through the pupil. A common way to tell that the cancer may be present is through a white eye reflection in a picture or a photographic red eye in one pupil, but not the other.

Treatment for Retinoblastoma goes through three distinct phases: saving the life of the child, then saving as much of the child’s vision as possible, and then minimizing the side effects of the treatment plan. A course of treatment is based on the individual nature of the disease development, so chemotherapy isn’t always necessary. There are some statistics to know about Retinoblastoma that are also important so a complete picture of this disease can be had.

Stages and Success Rate

There have been several stories lately about how social media has saved the life of a child. Because of the white or red glow that occurs with this disease in pictures, uploaded images can help people quickly tell if they need to have a child medically evaluated. Because of the seriousness of this disease, even the suspicion of Retinoblastoma should be investigated.

As with most other types of cancer, Retinoblastoma has been categorized into five different stages depending on the severity of the cancer. What is encouraging about the 5 year survival rates for kids with this cancer is that they are so high AND incorporate all 5 stages of the cancer. Even if a child is diagnosed with Stage V Retinoblastoma, which means there are very large tumors that incorporate 50% or more of the retina or the cancer has spread to the fluids that fill the eye, there is still an excellent chance for survival and vision in at least one eye.
In hereditary versions of this cancer, it is extremely important that children continue to follow up with their doctors because new tumors can still develop after a successful treatment. Close consultations with an ophthalmologist are mandatory and the disease can make the child more susceptible to new cancers later on in life.

Research continues to discover new avenues of treatment with this cancer, so every child should have the hope of a long, fulfilling life. Hearing the news that you’ve got cancer is not something that anyone, much less children, want to hear. With Retinoblastoma at least, not only is it rare, but the odds are extremely good that the cancer is going to lose.