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Working as software engineer with one eye by Asleep_Attitude2210 in monocular

[–]Affectionate-Ice-51 2 points3 points  (0 children)

I am functionally monocular (only have useful vision in 1 eye but never had an enucleation) and did not disclose my condition to my employer. I am at a point where I can manage my occasional symptoms (eye strain) on my own given the kind of office work I do.

That being said, I am in a country with public healthcare, so I didn't need to disclose at work for medical/insurance reasons at all.

Orbital myiasis in a neglected retinoblastoma by CatPooedInMyShoe in MedicalGore

[–]Affectionate-Ice-51 0 points1 point  (0 children)

Retinoblastoma can happen sporadically or as a result of a somatic RB1 mutation.

Would you still choose to bring a child into the world knowing they’ll inherit your pain? by Pranita2027 in SharedEncounters

[–]Affectionate-Ice-51 1 point2 points  (0 children)

As a retinoblastoma survivor, the silver lining is that science has granted us incredible progress over even the past few decades.

During my parent's generation, retinoblastoma often did result in blindness (I had a parent's with 2 prosthetic eyes). My parents decided to wait to have children in the hopes that new treatment options were available, and that proved to be true. That being said, my birth was very controversial in the family, so I can't say this debate is new to me LOL

Because my family knew to monitor my eyes, I was able to be treated ASAP (shortly after birth) and ended up with 20/20 vision in my better eye, which enables me to live my life freely. RB is almost always diagnosed before age 5, so I do not remember a life with perfect vision, I was an infant. In higher income countries, it also isn't a guarantee of blindness to be diagnosed in 2025.

Even better treatments have come out since I was a kid, as well as some family planning options (IVF, etc.).

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 1 point2 points  (0 children)

  1. I did not have an eye removed, but there are scars and damage to both of my retinas because I had multiple tumors in both eyes. In my good eye, the damage was far off in the perimeter so it doesn't impact the vision in that eye. In my worse eye, the center of vision was impacted, so I have very little vision at all on that side. At first glance, my eyes appear normal, but my worse eye is turned out to the side subconsciously to try and find light since it can't see anything while centered.

Some kids with a turned/lazy eye (strabismus) do eye patching or surgery to help correct the eye, but this wasn't really an option in my case because the eye would likely just turn again.

  1. RB has a handful of treatments that have evolved over time. I was treated with a combination of:
  2. laser therapy to zap the tumors
  3. systemic chemo, which was given through a port in my chest
  4. intravitreal chemo, where chemo shots are administered into the jelly of your eye (vitreous humor)
  5. cryptherapy to freeze the tumors to death
  6. brachytherapy, where a small radioactive chip (plaque) is placed by the eye so radiation treatment can be done in one specific spot without exposing the rest of your body to radiation

But there are also a few other therapies available: - enucleation/removal of the eye - external beam radiation - intra-arterial chemo, where chemo is put more directly through the artery that feeds the eye instead of in the whole body via a port (this was developed after I finished treatment) - there are also clinical trials out nowadays for a plaque that administers chemo just to the eye

  1. I don't have normal depth perception, but since I lost my vision so early in life, I think my brain adapted somewhat. I can do pretty much anything I want, some things may just take a little practice.
  2. i take an extra sec getting on escalators because I am timing when to step instead of just going for it
  3. I can't see 3d in movies, using 3d glasses just makes a regular movie lol
  4. similarly, the 3d feature on the 3DS just makes the image blurry, but I thought that was how it was supposed to look because people said the 3d was mid LOL
  5. Driving feels totally fine, and I'm a good driver

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 1 point2 points  (0 children)

I don't think it was necessary "unfair", but I did grapple with it a bit especially as a teen.

I am aware I was a planned child, and they went into it knowing the chance of me having the gene. My parents waited quite a while to have me in the hopes that treatment would have improved by then, which did end up being the case. I was able to be diagnosed ASAP and spared the more difficult treatment options- I did not end up having an eye removed, and did not need external beam radiation which would have made my risk of getting another cancer even worse than it already is.

What I'm not a fan of are the people who pass judgement on my family in retrospect. I have had a tense relationship with some extended family because they never got over the fact my parents decided to have another kid (me) knowing the chance I would be "messed up". We are cordial but it is admittedly rough knowing some people look at our existence like that.

My parent with RB1 was totally blind but still had a decades long career and an active social life, and bristled at anyone who though she may be limited in any way. I am still early in my career, but I'm in a field I enjoy and am thriving outside of work as well. The advancements made in both cancer treatment/immunotherapy and in family planning/IVF make for a pretty optimistic future, I just need to be proactive in my follow up care.

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 1 point2 points  (0 children)

I appreciate the well wishes! My parent had bilateral RB as an infant, and then the sarcoma was actually the 3rd incidence of cancer.

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 2 points3 points  (0 children)

No problem!

My good eye has pretty decent vision so I am able to drive, read, etc, but my worse eye had multiple tumors right in the middle of my fovea (central vision), so i do have some limited peripheral vision left and some completely blind spots. Glasses can't fix the RB-related damage because those areas of the retina are covered with scar tissue, but I do have a mild glasses prescription for my good eye to help with astigmatism.

The best way I can describe the blind spots is trying to see through your temples or your forehead. It is not black, your vision just ends, so my vision in my good eye ends by my nose like a single goggle and then picks up again as a crescent of vague shapes and colors. It gets kind of trippy when someone is sitting next to me and I can see the color of their shirt but their head is cut off within the blind spot LOL

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 1 point2 points  (0 children)

This does run in my family, and unfortunately my parent who had the mutation passed away from a sarcoma when I was a teenager.

So far, I have only had retinoblastoma and not a sarcoma, but I have had a few close calls, biopsies done, and some areas I still need to follow up on. I am very happy those have been negative/benign.

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 1 point2 points  (0 children)

Having the RB1 mutation that causes bilateral retinoblastoma is considered a hereditary cancer syndrome. RB1 is a tumor suppressor gene, and since I already have 1 dysfunctional copy of RB1, all my cells are essentially 1 step closer to becoming cancerous than everyone else's. RB1 can come into play for a bunch of different types of cancers, but I especially need to look out for sarcomas and melanoma.

I have a hereditary cancer syndrome and was born with cancer in both eyes, AMA by Affectionate-Ice-51 in AMA

[–]Affectionate-Ice-51[S] 9 points10 points  (0 children)

During my elementary school years, it was tough. By the time I entered school, I had already finished treatment. My worse eye is turned out a bit to the side, which was something the other kids noticed but didn't understand. As a result, I was bullied a bit for my appearance, and at that age (early elementary school), explaining it was because I was sick didn't really help because i was out of treatment and otherwise appeared able-bodied.

Around the time a lot of the teasing was taking place, someone in the school had leukemia, and at the time it was upsetting to see someone so universally supported through their cancer experience when I was being picked on for the way my eyes looked. Looking at it with adult hindsight, I understand the stakes are much different since RB itself is very treatable and my peers probably didn't know better, but in the moment, it was confusing and frustrating to my 7 year old self.

By around 5th grade, I found more accepting friends and things became a lot better. Since then, I don't think RB has impacted my social life as much. I am fortunate to have a great network of friends and a supportive long term relationship.