‘I had no symptoms – then a routine eye test revealed one-in-a-million cancer’

Eleanor’s routine eye exam unveils ocular melanoma at 26. High-tech proton beam therapy brings hope. A story of resilience and gratitude.
Eleanor Levine the woman diagnosed with extremely rare eye cancer.
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A woman has shared how a routine eye exam for reading glasses revealed she had cancer – despite her experiencing no symptoms.

Eleanor Levine was just 26 years old when a doctor told her there was a large tumour on her left retina.

Terrified, Eleanor had to go through multiple tests which confirmed her diagnosis of ocular melanoma – an extremely rare cancer of the cells that produce pigment.

“At first, I was in a full-on panic,” Eleanor, from Massachusetts, US, told Jam Press.

READ MORE: Mum ‘heartbroken’ as toddler has eye removed after ‘squint and glow’ turn out to be sign of rare cancer

Eleanor Levine the woman diagnosed with extremely rare eye cancer.
Eleanor Levine. (Picture: Jam Press)

“I don’t even wear glasses regularly.

“I figured that my reading glass prescription just needed a slight update. I didn’t notice any symptoms at all.

“In some ways, it also felt like a cruel joke from the universe; I had always been a worrier and a hypochondriac with an irrational fear of cancer.

“There’s nothing that I did or was exposed to that caused this.

“For whatever reason, this makes it all harder to grapple with. Why did this happen to me?

“I would wake up in the morning and think it was all a dream.

“Those were the darkest moments. It felt like looking down a black tunnel.”

After meeting with a retinal oncologist, Eleanor realised she had been experiencing some unnoticeable symptoms.

Eleanor Levine the woman diagnosed with extremely rare eye cancer.
Eleanor Levine. (Picture: Jam Press)

She said: “I had some vision loss peripherally in my left eye and I was having some left-sided headaches.

“Before this, I didn’t notice any symptoms at all.

“It’s amazing how the brain works to compensate for vision loss.”

At the end of November 2022, some of the best doctors in the field fitted a tantalum ring to Eleanor’s tumour to ensure the precision of her high-tech proton beam therapy.

She said: “The tantalum ring acted as a marker for the laser beam and there was even a physicist in the room with me that first day to ensure precision.

“I had a hard plastic mask shaped to fit my face so that I couldn’t move an inch during treatment.

“I went into the hospital for about an hour each day for five days.

“I was only in the room for 20 minutes and each proton beam session lasted less than one minute.”

Thankfully, Eleanor’s treatment has seen good results and her MRIs have been clear so far.

Eleanor’s ophthalmologist comparing her tumour before and after radiation, before on the right.
Eleanor’s ophthalmologist comparing her tumour before and after radiation, before on the right. (Picture: Jam Press)

However, she will need to continue with treatment for five years, including getting an eye injection called Avastin every four months, to prevent complications from the radiation in the eye.

She said: Basically, it helps to stop or slow vision loss.

“So far, I’ve lost about half of the vision in my left eye.”

“I still have hard moments and nights when I cry myself to sleep, afraid of what the future holds.

“Sometimes I’m angry, furious even, that this has happened to me.

“Being a young person with cancer has been very alienating, especially with a rare cancer pretty much no one has ever heard of.

“I also worry about my work – I do documentary film editing and archival producing, so having my eyes function well is pertinent to my career.

“But I also feel that I’m able to see the silver linings of this new life.

“Living with cancer has made me all the more grateful for what’s good in my life and to not take anything for granted.

Eleanor Levine the woman diagnosed with extremely rare eye cancer.
Eleanor and her boyfriend after her eye surgery. (Picture: Jam Press)

“It’s a lesson in staying present, staying in the now.

“The hardest obstacle to overcome is the shattering of a false belief that my future was somehow predictable.

“I think most people (especially young people) convince themselves of this.

“But it’s not true.

“We have no idea what could happen to us, good or bad, and it’s just more clear to me now than ever.

“I wish people knew that this can and does happen to anyone, and there’s no known reason why.

“And that even if they have healthy eyes, they should regularly get their eyes checked (and dilated) because it might just save their life.

Eleanor Levine the woman diagnosed with extremely rare eye cancer.
Eleanor Levine. (Picture: Jam Press)

“I am so blessed that I caught it with that routine appointment.”

It’s now been over a year since Eleanor’s diagnosis.

She added: “It feels cliché to say, but don’t take life for granted.

“ I spent far too much time in my young years being a worrier.

“It does no good! Be grateful for what you have.”

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