Learning about Retinoblastoma: A Type of Eye Cancer
- Chloe Ross, 22, noticed her son’s eye wan’t very responsive and seemed cloudy when he turned 2, but she originally thought these symptoms were due to a lazy eye. Sadly, progressing symptoms would eventually lead her to discover that he had a type of eye cancer called retinoblastoma.
- Looking back on old pictures, Ross also noticed her son’s “whole iris had a glow” when he was as young as 8 months old. Now, she’s working to educate parents about signs of the eye cancer.
- Retinoblastoma is the most common type of eye cancer found in children, but it is rare. Only about 200-300 children will be diagnosed with it in the U.S. each year.
- Here at SurvivorNet, we’re always encouraging people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
Ross, 22, first noticed something was off with her son, Cayson-Jay Palethorpe, when he turned 2.Read More
“I put it down to him having a lazy eye… I mentioned my concerns to a health visitor and she did a referral for a hearing and eye test and the only thing I heard from was the hearing test, not the eye test.”
Ross thought Cayson-Jay might need glasses or an eye patch to straighten the eye, but she never expected the diagnosis that unfolded.
Eventually, his condition grew worse. He was even sent home from his nursery because the eye had become red and inflamed. When she sent pictures of his eye to doctors, she never heard back. As things progressed, Ross turned to the internet, and a quick google search of his symptoms pointed her to the possibility of a type of eye cancer called retinoblastoma.
“If I didn’t Google it when I did, I would have waited for the eye assessment and we could have been in a lot worse case scenario than we are now,” she said. “When I was looking online they said that they have a glow in their eye when you take pictures with flash and I looked back at quite a few pictures because I was thinking ‘I’m sure he had that glow in his eye.'”
Sure enough, Ross found pictures of her son when he was as young as 8 months old with the “glow in his eye.”
“Those pictures hid a secret that could be deadly if it wasn’t caught in time,” she said. “The whole iris had a glow, and it was a goldy, silvery kind of color when I took a picture with the flash.
“When I take a picture, sometimes the flash makes my eyes go funny and that’s what I put it down to.”
After a visit to a doctor and a referral to a children’s hospital, doctors discovered that Cayson-Jay was completely blind in his left eye. Later tests and examinations confirmed his diagnosis: retinoblastoma.
“They said that his eye was unsaveable and the worst possible outcome was that he had to have an enucleation [eye removal],” she said. “I just couldn’t stop crying. I felt guilty.
“I was told by the hospital that he should have had checks when he was one years old for this kind of stuff, and there was no checks done.”
Given that the tumor was “extra large,” chemotherapy treatments were a possibility for little Cayson-Jay. But, thankfully, doctors decided chemo was unnecessary after they received his pathology reports following his eye removal surgery.
“He’s technically received the all clear now,” Ross said. “He’ll still have to have check ups all the time for the other eye and for his prosthetic eye to be removed and replaced as he’s growing.”
Back to being “his happy and cheeky self,” Cayson-Jay is learning new things and “thriving.” But Ross is determined to share an important message to other parents regarding their children’s eye health.
“If you do see a glow in their eye, they’re squinting a lot, have cloudy eyes or just generally always look like they’re in pain but can’t tell you that they’re in pain or always complaining of a headache… Those kind of things should be checked because they could be signs of retinoblastoma,” she said.
Understanding Cayson-Jay’s Type of Eye Cancer
The term eye cancer can refer to any cancer that originates in the eye. Melanoma is the most common type of eye cancer, but the kind that Cayson-Jay had – retinoblastoma – happens to be is the most common type of eye cancer in children.
This cancer most often develops in infants and very young children, and it rarely occurs in children older than 6. Overall, retinoblastoma is rare, but it accounts for about 2 percent of all childhood cancers with about 200 to 300 children being diagnosed with the disease each year in the United States.
About 75 percent of children with retinoblastoma have a tumor present in only one eye (making it unilateral retinoblastoma), but another 25 percent will have both eyes affected (making it bilateral retinoblastoma). And, thankfully, more than 9 out of 10 children in the United States with retinoblastoma are cured.
Retinoblastoma can be inherited, like we saw in the case above. Most children with retinoblastoma do not have a family history of the disease – regardless of whether theirs is heritable or non-heritable – but children with the heritable form have a 50 percent chance of eventually passing on the RB1 gene change that causes the tumor to their children. Children with the non-heritable form of retinoblastoma do not pass on an increased risk for developing the disease.
Signs and Symptoms of This Type of Eye Cancer
Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child’s eye. Two of the more common signs and symptoms include:
- White pupillary reflex (leukocoria) – the pupil appears white or pink instead of red when you shine a light in the eye
- Lazy eye (strabismus) – the eyes don’t appear to look in the same direction
Other less common signs and symptoms can be:
- Vision problems
- Eye pain
- Redness of the white part of the eye
- Bleeding in the front part of the eye
- Bulging of the eye
- A pupil that doesn’t get smaller when exposed to bright light
- A different color in each iris (the colored part of the eye)
And if the cancer spreads outside the eye, symptoms can vary depending on where the cancer currently is. Symptoms for these scenarios can include:
- Loss of appetite and weight loss
- Lumps under the skin in the neck
It’s important to note, however, that many of these signs and symptoms are more likely to be caused by something other than retinoblastoma. Even still, you should always bring up any of these symptoms to your child’s doctor should they occur because the outlook for retinoblastoma patients is not as good if the cancer has had time to spread outside of the eye.
Advocating for Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate.
And even if you’re called ‘pushy’ or people dismiss the concerns you have for your child, it’s important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis – cancer or otherwise.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake.
Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you have – or your child has – cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.