Retinoblastoma survivors

Family member interested in communicating with other long-term retinoblastoma survivors regarding experiences and treatments for associated problems.


  • Jennifer4572
    Jennifer4572 Member Posts: 2

    TripleOption81: This is my first time visiting the CSN board (as I'm just recovering from treatment and digging around for information myself), but my sister was diagnosed with retinoblastoma in 1977 when she was two-years-old. She had her eye enucleated, and we were fortunate that the cancer had not spread to her optic nerve. (Only her right eye was affected.) How old is your family member? My sister is in her mid-40s and is doing extremely well. She has her doctorate in physical therapy and is happily married with two sons who are athletes. (Just thought you might feel uplifted knowing she's doing very well now - aside from learning to live with only one eye.) I know there are more advanced ways of treating retinoblastoma these days, and certainly, there might be side effects from such treatments that she didn't experience with surgery only. I know retinoblastoma is rare - and I hope your family member is thriving now. (I know it's been a couple years since you posted, but I wanted to comment knowing it's tough to find others with this form of cancer.)