Life After Childhood Cancer: Retinoblastoma Survivor Stories

Retinoblastoma is a rare childhood eye cancer. If it spreads to the brain, it can eventually lead to death. Growing up I only met a handful of survivors like me, let alone ones that looked like me.
We all struggle with the same if not similar symptoms. Life after surgery is not an easy one. I was reading this thread in a Facebook group which became longer and longer. One night I was inspired to share their stories since our stories are all unique and rarely talked about.
If you have not read my cancer survivor story, click on this link
You may also watch or listen to me share my story in this video.


Grab a cup of coffee or tea and make sure you are sitting down for these ten various survivor stories in regards to life after surgery. We may have lost our eyesight, but we have gained life-changing experiences with the use of our other senses. Names are removed and protected for privacy. Leave a comment letting us know if you were inspired by any of these posts!


 Photo Source: Unsplash

Photo Source: Unsplash

Having lost my right eye at the age of seven to RB (Retinoblastoma), I have always been curious how others with the same condition have adjusted. The first couple of years were probably the hardest to adjust to as children can be very cruel to someone who looks "different". Once the fake eye was finally in place I thought it was the most horrendous thing. Every time I looked in the mirror it was the only thing I could focus on. Obviously, there is more to the story with Chemo and all the other happy BS that comes with it (mainly was only given 6 months to a year to live, but who would have thunk it, still here) but over time I was able to adjust to it. I give my parents all the credit in the world for not holding me back and letting me do what I wanted to do. Sure, there were struggles but I was able to overcome any obstacle that was put in front of me. I excelled at every sport that I wanted to do. Of course being fatter and older now (lol) I stick to softball but still pitch. I think when I was 12-13 I finally came to grips with the whole thing. Nothing was going to change the way I looked so I just never tried to hide it. I may stand a certain way when I have my picture taken so my eyes do not look that crossed but it is what it is. Embracing it has taught me that people are not hateful, but curious. I will talk about it with anyone that asks...if having a conversation with someone new and they are looking lost as to what eye to look at, I will just stop them and tell them which one to focus on and explain why I look different. This puts us both at ease and everything goes that much smoother. Do I have bad days and ask why me? Sure I do, but then I look at what I have accomplished in life even with this and then I am right back on track. I know I went on a little bit of a rant, but I guess this is a little bit of my story and who I am. I have never hidden from being the butt of a joke as I am usually one to start it at my expense.


Lost my right eye at the age of two. Now I’m 19 with a prosthetic eye. Being a teenage girl sucks enough. Being blind just adds to it all. I Can’t do my makeup because my lids don't move so i can't blink with my right eye. So it's much easier shoving hair in my face, angling pictures and all that jazz. I can make all the blind jokes in the world. I have dark humor, so humor is one way to cope with it) but I'm still so insecure about it all.


My right eye was removed at 19 months old. Had radiation to my left. I have always been one to not let my vision loss get in the way of whatever I want to do.


Both of my eyes were removed at age 2.5 with no radiation; grew up with prosthetics to the point where they're now a natural part of me. Frankly, aside from occasional warnings to "cut out the heap of red meat" from my diet, RB has not been front and center for my family; for my family as a whole, the struggle for legal status is the most all-consuming problem, and for me personally, hearing impairment is the greater emotional trial.


I lost my left eye at [age] two and it was removed - no chemo. I figure skated professionally at the Olympic caliber level! I’ve never let it stop me!


I lost my right eye at four months old and now I'm 22. I never thought to tell people which eye to look at I've just gotten used to people not knowing which eye to look at.


I lost my right eye at three months old and had radiation therapy on the left then lost all of that site 11 years ago and have no light perception now. I am 45 years old. Some days are very hard, however, I try to stay on the positive side.


I hid behind my fringe as a child but don't even wear my prosthetic eye anymore. I find it uncomfortable and it seems to attract more attention than not wearing one! 😂I don't mind curiosity, I'll talk about it with anyone. I do giggle when I catch people staring though.


I lost my right eye at 4.5 months old...later that same year it had developed in my left eye. I had 2 rounds of cryotherapy and a laser surgery...and have been 25 years cancer free. My family still doesn’t even think of me as a cancer survivor.


I was 20 months old when I lost my right eye to stage 5b RB. Now 35 I do have my days where I do notice it, then I remind myself I’m here, healthy, and happy!


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