Category: Health and Wellness
I'd be very interested to hear from any adults who had Retinoblastoma as children. My reason for asking is that, in recent years I've heard that people who had retinoblastoma as children are more likely to develop cancer in adulthood.
What I'd really like to know is whether screening is available for people who have had Retinoblastoma to try to detect the early onset of any such cancer. I'd be particularly interested to hear from people in the UK as that's where I am, but anyone's experiences would be helpful.
I don't have this condition myself. Am inquiring on behalf of someone else.
I lost my sight to bilateral retinablastoma at age 3 and 4. I haven't developed any other types of cancer. You are expected to get anual screenings, but it's like any other condition that doctors just want to follow up.
I have looked into this quite a bit. WHile I agree that not every retinoblastoma surviver will get a secondary cancer, I have met far to many who have so I personally am not going to risk it. I lost my iste to bilateral retinoblastoma when I was 2.5, and had 6 month checks till I was 12. Now I get anual blood test, ct scann, and thyroid ultrasound every year. in my research I have found that rb survivers are at higher risk of bone cancer, brest cancer, melanoma, and lymphoma. Enough reason to take a day out to get a check every year if you ask me. The risk is apparently increased depending on the type of treatment you had also. There is also a genetic test you can have to see if you are a carrier of the rb gene defect that can be passed on to your children. If you are, then there is a test you can have when you fall pregnant, early in the pregnancy to find otu if your child is also effected. THis means that the cancer can be monitered, and treatment can begin ASAP.
Wow. I'm going to have to be more careful I guess. The impression I'd gotten from my doctors was that there may be a link to higher chance of other cancers, but there wasn't any agreement on it from doctor to doctor. Though I am glad to hear about the genetic tests mentioned, as that's something I've been a bit worried about. I'll have to look into that further.
Guys, do yourselves a favor and get those check-ups, and take any sign of a potential cancer very seriously. As you probably know, Wildebrew had RB as a kid and just finished chemo for another cancer that sprung up almost 30 years later. Hopefully you'll never have to deal with that, but if you do, the earlier you can catch it, the better.