Eye Cancers (Retinoblastomas) Support Group
Retinoblastoma is a cancer of the retina. Development of this tumor is initiated by mutations that inactivate both copies of the RB1 gene, which codes for the retinoblastoma protein. Until recently the only treatment was to remove the affected eyeball before the cancer spread. Chemotherapy is the treatment of choice for most unilateral cases.
Hi All,
I am new to this group...I hope this message finds everyone in good health.
Recently I went to see a Retina specialist who noted a large, but not terribly raised choroidal nevus on my Retina.
The concern is that this growth was not there 4 months ago at my last complete eye exam or any of my previous 4 month eye exams (I have an optic nerve condition that requires monitoring)
My current Optho, and the Neuro-Optho I had when living in TX not too long ago, are both fairly well known in their specialties, and both perfectionists...it is really very unlikely that both of them would have mistakenly overlooked a Nevus this large several times.
So it seems the Nevus is recent and fast growing. I am going to see an Ocular Oncologist at the end of the month- if the nevus is cancerous a radiation plaque would be surgically implanted somewhere in the back of my eye...I'm a little lost on the details.
Anyway, I have an Immune Disorder to begin with, and worry a bit on how I would recover from surgery and radiation since I have no Immune system of my own, and have to have Infusions of Donor Plasma in order to have any anti-bodies at all.
Just wondering what other people's experiences have been like if you don't mind sharing?
Thanks, LuLu
I am new to this group...I hope this message finds everyone in good health.
Recently I went to see a Retina specialist who noted a large, but not terribly raised choroidal nevus on my Retina.
The concern is that this growth was not there 4 months ago at my last complete eye exam or any of my previous 4 month eye exams (I have an optic nerve condition that requires monitoring)
My current Optho, and the Neuro-Optho I had when living in TX not too long ago, are both fairly well known in their specialties, and both perfectionists...it is really very unlikely that both of them would have mistakenly overlooked a Nevus this large several times.
So it seems the Nevus is recent and fast growing. I am going to see an Ocular Oncologist at the end of the month- if the nevus is cancerous a radiation plaque would be surgically implanted somewhere in the back of my eye...I'm a little lost on the details.
Anyway, I have an Immune Disorder to begin with, and worry a bit on how I would recover from surgery and radiation since I have no Immune system of my own, and have to have Infusions of Donor Plasma in order to have any anti-bodies at all.
Just wondering what other people's experiences have been like if you don't mind sharing?
Thanks, LuLu
I haven't had the experiences you have had. I completely empathize with your fears about the future. How have things been so far?
I had bilateral retinoblastoma as a child. I was treated using radiation therapy. It completely got rid of the cancer but stunted the bone in my face so my eyes appear to be smaller than normal. I also developed cataracts from the radiation but I'd rather have that than cancer. When I was 8 I got laser surgery to correct the cataracts and I've had stable vision ever since.
Wishing you all the best! If you need a friend I'm here!