An Eye Cancer Survivor Advocates for Her Children
- Three young brothers were diagnosed with the same eye cancer as their mother. But since the mother knew the cancer she overcame when she was young could be inherited by her babies, she made sure doctors screened them for retinal tumors.
- 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.
Angie Rush was diagnosed with a type of eye cancer called bilateral retinoblastoma when she was just 6 weeks old.Read More
Rush knew the genetic mutation that caused her type of retinoblastoma had a 50 percent chance of being inherited by any children she would have. So when she had her first child, Tristen, Rush made sure doctors screened her newborn for any retinal tumors.
Tristen was born prematurely and diagnosed with the same eye cancer, bilateral retinoblastoma, as Rush at three weeks old.
“The top priority would be to save his life, and then to save his eye, and then to save as much vision as possible,” Rush said.
Then when Caison came along, he, too, was found to have tumors in both of his eyes at just two or three days old. He underwent six months of chemotherapy and laser treatments all while in the NICU.
“That definitely was scary, watching his tiny body go through everything,” Rush said.
The youngest of the brothers, Carter, looked like his retinas were all clear when he was first born in 2019. But later testing showed his parents they needed to be on the lookout for the cancer. He eventually was diagnosed with the same disease, and underwent treatment that did not require the removal of any eyes.
“Nothing came up, and then we did genetic testing, and that came back positive,” Angie said. “So, we knew that we had to keep getting him checked, until, until the tumors showed up.”
Fast forward to today, and Tristen, 8, Caison, 5, and Carter, 2, are all healthy, but still have checkups. Part of their successful treatments can likely be attributed to Rush’s advocacy for her children that lead to all of their early diagnoses. And now, looking back on all of their cancer journeys, Rush says it’s only made her stronger.
“It’s been a part of my life for as long as all my life, pretty much all my life,” Rush said. “And, now, it’s a part of my boys’ life.”
Understanding the Rush Family’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 the Rush family has – 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.
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 – just as we saw in the case above.
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.