Body Image and Cancer
- Rachel Mayta lost her eye to retinoblastoma when she was just 18 months old. Now, she’s a brave 32-year-old woman determined to end the stigma against visible differences.
- Today, Mayta confidently experiments with different types of prostheses – including ones that glow in the dark.
- 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.
- Your body image may be affected by a cancer journey, but we’ve seen survivors embrace their confident selves after treatment time and time again. For celebrity stylist Ann Caruso, beating breast cancer meant eventually coming to the conclusion that femininity is a state of mind.
Mayta’s doctor spotted something strange in her eye when she was 18 months old and immediately asked her parents for a picture of the little girl. That’s when he noticed the odd glow coming from her eye in the photo and knew something was wrong.Read More
Mayta was diagnosed with a type of eye cancer called retinoblastoma in October 1991, and doctors told her parents that the eye had to be urgently removed to prevent the cancer from spreading. She underwent the surgery four days later and got fitted for her first prosthetic at 20 months old.
As she grew up, some children bullied her and gave her the nickname “cyclopes,” but it wasn’t until her mid-20s that Mayta really struggled with her self-confidence when she underwent a surgery meant to replace the implant holding her prosthetic in place. As a result of the procedure, she lost most of her eye’s ability to blink.
“A surgery where I had expected the outcome to result in more mobility of the eye and a more realistic looking prosthetic became the exact opposite,” she said. “Prior to this surgery most people wouldn’t have even noticed my eye, but afterwards it was very apparent.
“I was very aware of the people looking at me, I had people say mean things and talk to me differently.”
Mayta became very unhappy with her how she looked and spent most of her time inside her home for almost a year.
“And then one day it hit me: I am who I am. I made the active choice to stop saying mean things to myself and only allow myself to feed my brain positivity and tell myself good things,” she said of her shift in mindset.
Now, Mayta is having fun by exploring new options for eye prosthetics and sharing that process with her social media followers online.
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“I am so grateful that I found my occultist Christina King at the Center for Ocular Prosthetics in Portland – she is incredible,” she said. “I really wanted a way to show people that I’m happy with who I am and I am open to questions and didn’t want to hide the fact that I wore a prosthetic.”
Since working with King, she’s worn many unique eye prostheses including ones that are glow in the dark, holographic and gold-leafed. And with her activity on social media, she hopes to end the stigma of visible differences.
“I love to make people laugh on TikTok and shed some light on what life is like having a prosthetic through humor,” she said. “Being able to laugh about the things that make us different is such a vital tool. Be exactly who you are 100 per cent of the time and you’ll have nothing to hide.”
Understanding Retinoblastoma: A 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 Mayta 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.
Body Positivity and Cancer
Mayta is very aware of the societal pressures surrounding women, and her message is to focus on embracing her differences rather than hide them. Other cancer survivors, like Ann Caruso, share a similar perspective
Caruso had 12 surgeries to treat her breast cancer and told SurvivorNet that all of the change really affected the way she saw her body.
“You’re not the same carefree person that you once were, and it was very hard for me to look at myself every day,” Caruso said in a previous interview with SurvivorNet. “It was like I was a totally different person and didn’t fit into any of my clothes for so long.”
But the celebrity stylist has learned a whole lot about femininity and body image since beating breast cancer. She hopes to impart her knowledge upon others dealing with similar struggles.
“Femininity is a state of mind,” Caruso said. “And I think that’s something that we have to remind ourselves.”